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Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life
DYING IN AMERICA
Improving Quality and
Honoring Individual Preferences
Near the End of Life
Committee on Approaching Death: Addressing Key End-of-Life Issues
Copyright National Academy of Sciences. All rights reserved.

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www.national-academies.org

COMMITTEE ON APPROACHING DEATH:

ADDRESSING KEY END-OF-LIFE ISSUES
PHILIP A. PIZZO (Co-Chair), Former Dean and David and Susan

Heckerman Professor of Pediatrics and of Microbiology and
Immunology, Founding Director, Stanford Distinguished Careers
Institute, Stanford University, Stanford, California
DAVID M. WALKER (Co-Chair), Former U.S. Comptroller General,
Bridgeport, Connecticut
PATRICIA A. BOMBA, Vice President and Medical Director, Geriatrics,
Excellus BlueCross BlueShield, Rochester, New York
EDUARDO BRUERA, Professor and Chair, Department of Palliative
Care and Rehabilitation Medicine, The University of Texas MD
Anderson Cancer Center, Houston, Texas
CHARLES J. FAHEY, Marie Ward Doty Professor of Aging Studies
Emeritus, Fordham University; Program Officer, Milbank Memorial
Fund, Syracuse, New York
PAMELA S. HINDS, Director, Department of Nursing Research and
Quality Outcomes, Children’s National Health System; Professor of
Pediatrics, The George Washington University, Washington, DC
KARLA F. C. HOLLOWAY, James B. Duke Professor of English and
Professor of Law, Duke University, Durham, North Carolina
NAOMI KARP, Senior Policy Analyst, Office for Older Americans,
Consumer Financial Protection Bureau, Washington, DC
JEAN S. KUTNER, Gordon Meiklejohn Endowed Professor of Medicine
and Associate Dean for Clinical Affairs, University of Colorado
School of Medicine; Chief Medical Officer, University of Colorado
Hospital, Aurora, Colorado
BERNARD LO, President, Greenwall Foundation, New York, New York
SALIMAH H. MEGHANI, Associate Professor, Department of
Biobehavioral Health Sciences, University of Pennsylvania School of
Nursing, Philadelphia
DIANE E. MEIER, Director, Center to Advance Palliative Care,
Catherine Gaisman Professor of Ethics, and Professor, Department of
Geriatrics and Palliative Medicine, The Icahn School of Medicine at
Mount Sinai, New York, New York
WILLIAM D. NOVELLI, Professor, McDonough School of Business,
Georgetown University; Co-Chair, the Coalition to Transform
Advanced Care, Washington, DC

STEPHEN G. PAUKER, Professor of Medicine and Psychiatry, Tufts

University School of Medicine; Division of Clinical Decision Making,
Informatics and Telemedicine, Tufts Medical Center, Boston,
Massachusetts
JUDITH R. PERES, Clinical Social Worker and Policy Consultant,
Chevy Chase, Maryland
LEONARD D. SCHAEFFER, Judge Robert Maclay Widney Chair and
Professor, University of Southern California, Santa Monica
W. JUNE SIMMONS, President and CEO, Partners in Care Foundation,
San Fernando, California
CHRISTIAN T. SINCLAIR, Assistant Professor, Division of Palliative
Medicine, Department of Internal Medicine, University of Kansas
Medical Center, Kansas City, Kansas
JOAN M. TENO, Professor of Health Services, Policy, and Practice,
Brown University School of Public Health, Providence, Rhode Island
FERNANDO TORRES-GIL, Professor of Social Work, Professor of
Public Policy, and Director of the Center for Policy Research on
Aging, Luskin School of Public Affairs, University of California,
Los Angeles
JAMES A. TULSKY, Professor of Medicine and Nursing and Chief,
Duke Palliative Care, Duke University, Durham, North Carolina
Study Staff
ADRIENNE STITH BUTLER, Senior Program Officer
STEPHANIE H. PINCUS, Scholar-in-Residence
LAUREN SHERN, Associate Program Officer
BRADLEY ECKERT, Research Associate
JIM BANIHASHEMI, Financial Officer
THELMA COX, Administrative Assistant
Consultants
JUDITH A. SALERNO, President and CEO, Susan G. Komen Breast
Cancer Foundation
NEIL WEISFELD, Writer
VICTORIA WEISFELD, Writer
RONA BRIERE, Editor
vi

Reviewers
This report has been reviewed in draft form by individuals chosen

for their diverse perspectives and technical expertise, in accordance with
procedures approved by the National Research Council’s Report Review
Committee. The purpose of this independent review is to provide candid
and critical comments that will assist the institution in making its published
report as sound as possible and to ensure that the report meets institutional
standards for objectivity, evidence, and responsiveness to the study charge.
The review comments and draft manuscript remain confidential to protect
the integrity of the deliberative process. We wish to thank the following
individuals for their review of this report:
Susan Block, Harvard Medical School

Christine K. Cassel, National Quality Forum
Myra J. Christopher, Center for Practical Bioethics
Don E. Detmer, University of Virginia School of Medicine
Kathleen A. Dracup, University of California, San Francisco, School
of Nursing
Alexandra Drane, Eliza Corporation
Thomas Edes, U.S. Department of Veterans Affairs
Betty Ferrell, City of Hope Medical Center
Anita K. Jones, University of Virginia
Judith R. Lave, University of Pittsburgh
Joanne Lynn, Center on Elder Care and Advanced Illness, Altarum
Institute
Willard G. Manning, The University of Chicago
vii

viii REVIEWERS
Charlie Sabatino, American Bar Association Commission on Law and

Aging
Tracy Schroepfer, University of Wisconsin–Madison
Mark D. Smith, California HealthCare Foundation
VJ Periyakoil, Stanford University School of Medicine
James W. Vaupel, Max Planck Institute for Demographic Research
Joanne Wolfe, Children’s Hospital Boston
Although the reviewers listed above provided many constructive com-

ments and suggestions, they were not asked to endorse the report’s conclu-
sions or recommendations, nor did they see the final draft of the report
before its release. The review of this report was overseen by Bradford H.
Gray, The Urban Institute, and Donald M. Steinwachs, Johns Hopkins
University. Appointed by the National Research Council and the Institute
of Medicine, they were responsible for making certain that an independent
examination of this report was carried out in accordance with institutional
procedures and that all review comments were carefully considered. Re-
sponsibility for the final content of this report rests entirely with the author-
ing committee and the institution.

Foreword
In spring 2009, bills for what eventually became the Patient Protection
and Affordable Care Act were being drafted in the House and Senate. A
bipartisan group of representatives sponsored a provision in the House
version of the bill that would have authorized Medicare to pay doctors
who counsel patients about living wills, advance directives, and options for
end-of-life care. AARP endorsed the provision. However, pundits, bloggers,
op-ed writers, talk show hosts, and other legislators claimed the provision
would lead to government-sponsored euthanasia and heartless “death pan-
els” that would adjudicate who shall live. The administration distanced
itself from the proposal, which never found its way into the law.
Still, the specter of death panels had staying power. One 2011 poll
of American adults found that 23 percent believed the Affordable Care
Act gave government the power to make end-of-life decisions on behalf
of seniors, and 36 percent were not sure. When Donald Berwick became
commissioner of the Centers for Medicare & Medicaid Services, he at-
tempted to authorize payment for counseling on advance care planning as
part of annual wellness visits provided for under the Affordable Care Act.
This provision was to go into effect on January 1, 2011. By January 4, the
administration had withdrawn this provision. Doctors would still be free
to talk with patients about living wills, hospice care, or other end-of-life
concerns, but they could not bill Medicare for this service.
The controversy on this topic and the political desire to avoid it do
not alter the fact that every person will face the end of life one day, and
many have had hard experience with the final days of a parent, a spouse,
a child, a sibling, another relative, or a dear friend. At a time when public
ix

x FOREWORD
leaders hesitate to speak on a subject that is profoundly consequential for

the health and well-being of all Americans, it is incumbent on others to
examine the facts dispassionately, assess what can be done to make those
final days better, and promote a reasoned and respectful public discourse
on the subject.
With these goals in mind, the Institute of Medicine undertook the study
documented in this report. A public-spirited donor, wishing to remain anon-
ymous, came forward to support this study. We are grateful to this donor
and to the outstanding and diverse committee, skillful co-chairs, and able
staff who produced this comprehensive and compelling report. We hope it
will stimulate the personal and public conversations and changes necessary
to honor individual preferences and meet everyone’s needs at the end of life.
Harvey V. Fineberg, M.D., Ph.D. Victor J. Dzau, M.D.

Former President, Institute of Medicine President, Institute of Medicine

Preface
Death is ultimately a deeply personal human experience that evokes dif-

ferent reactions, emotions, and perceptions from individuals, families, and
communities throughout the life cycle. The perception of death is different
for children, adults seen to be in the prime of life, and those in the later
years of life, but it is also highly subjective and deeply personal irrespective
of when it occurs along the life journey.
Perceptions and views about death are also influenced by a wide array
of social, cultural, economic, geographic, spiritual, and religious beliefs and
experiences. While most people have given thought to how they would like
to die, many have found it difficult to communicate those views and choices
to family and loved ones, and in many cases, family and loved ones have
their own perceptions and views about death that can influence discus-
sions about dying. Even when individuals and families are aligned, societal
norms, expectations, and requirements are not always concordant with the
patient’s wishes and choices. No one really knows whether, in the end, the
death of a loved one occurred with the dignity that was hoped for, or to
what degree the dying experience was marred by pain, fear, and discomfort,
emotional or physical.
Unfortunately, the evidence demonstrates that even if one completes an
advance directive or has a discussion on the subject with family and loved
ones, it tends to be separated from the time of dying by months, years, or
even decades. Most people envision their own death as a peaceful and an
ideally rapid transition. But with the exception of accidents or trauma or
of a few illnesses that almost invariably result in death weeks or months
after diagnosis, death comes at the end of a chronic illness or the frailty
xi

xii PREFACE
accompanying old age. Few people really have the opportunity to know
when their death will occur.
Even though death is very much part of the cycle of life and the journey
to physical dying begins with the inception of living, thinking and talking
about one’s own death usually remains in the background, at least until its
prospect become more probable or imminent. Of course, death can occur
without warning, as it does with assaults and trauma, whether accidental
or purposeful. Sudden death can also occur with certain illnesses, but death
most often is more insidious and the result of a chronic illness or disease.
And while it is true that the likelihood of death increases with age, it is also
true that death occurs throughout the life cycle. As a discipline, moreover,
medicine is filled with examples of faulty predictions offered prospectively,
sometimes too tentatively and often too definitively. Humility about the in-
ability to predict the actual time of death is an important attribute for the
health care professional regardless of discipline or area of expertise.
As longevity becomes more common and disease leading to early and
frequent death becomes less prevalent, it is easy to be lulled into the belief
that death may be postponed or, as some prominent figures have forecast,
even avoided. To be sure, advances in science and medicine and the bur-
geoning field of stem cell biology and regenerative medicine offer the pros-
pect of delaying death to a much greater extent than previously thought
possible. After all, in just one century, life expectancy in the United States
rose from age 47 to 78, and individuals over 90 are now the most rapidly
growing (albeit still a small) portion of the population. It appears probable
that many children being born today will still be active at the turn of the
next century. Still, death will inevitably occur.
While optimism about the prospect of continued life abounds, fears
about death—or at least how it can happen or who governs it—can easily
be stoked. Witness the impact of the unfortunate (although purposeful)
choice of the words “death panels” during the heated debate surrounding
the passage of the Patient Protection and Affordable Care Act in August
2009. Those two words conveyed that individual choice in how one faces
dying and death could be supplanted by a distant and uncaring bureau-
cracy. While this fear was unfounded, its very presence and the ease with
which it was evoked underscore the sensitivity of the topic of their personal
mortality for many Americans, especially the elderly. That 20 percent of
the U.S. population will be older than 65 by 2050 further demonstrates
the importance of finding ways to improve the quality of the final days of
life and honoring individual choices about end-of-life issues and concerns.
The Institute of Medicine (IOM) has played an important role in con-
versations and policies surrounding end-of-life care. In 1997, the IOM pro-
duced the report Approaching Death: Improving Care at the End of Life,
and in 2003, it extended the conversation to pediatrics in its report When

PREFACE xiii
Children Die: Improving Palliative and End-of-Life Care for Children and
Their Families. Each of these reports has had a major impact on end-of-
life care, and a number of new programs, policies, providers, and systems
of care have developed as a consequence. While many of the observations
from these two major reports remain relevant, the United States has under-
gone many changes in its demography, in health care outcomes, and in the
costs of health care delivery since these reports were published. Indeed, the
past several years have witnessed a heightened focus on health care in this
country, on what does and does not work, and on how systems of care vary
across the population and differ from those of other developed countries.
There is no question that while the cost of care in the United States is the
highest in the world, the outcomes of care are not superior to those in other
nations in any dimension or metric. And while cost should not by itself
drive how high-quality, evidence-based care is delivered, it must be part of
the dialogue. This applies to the care provided throughout the life course.
In 2012, the leadership of the IOM determined that another study on
the end of life was needed given the intense ongoing dialogue surrounding
health care reform in the United States. Dr. Harvey Fineberg, who was then
president of the IOM, determined that this study should be conducted by a
committee led by co-chairs whose collective expertise bridged the spectrum
of the health care debate. One of us (Philip A. Pizzo) has spent decades car-
ing for children and families with catastrophic disease facing the prospect
of death. He has also been deeply steeped in biomedical research and the
leadership of two major academic medical centers. The other (David M.
Walker) has extensive experience in connection with fiscal responsibility
and health care policy issues. His leadership experience spans all three ma-
jor sectors of the U.S. economy. Of course each of us also brought personal
history and experiences to the endeavor that resulted in areas of overlap,
synergy, and sometimes difference in perspective. Our consensus commit-
tee included 19 other members, each with deep expertise related to various
aspects of the medical, social, economic, ethical, and spiritual dimensions
surrounding death.
Along with our highly competent study director, Dr. Adrienne Stith
Butler, the committee held six meetings and hosted numerous discussions
by phone, email, and other forms of communication. Those discussions
generated both heat and light and gave witness to the strong and sometimes
polarizing views that are engaged around the topic of the death and dying
of vulnerable patients and families. Understandably, there were times when
dialogues and debates seemed to reach an impasse, reflecting the larger
public conversation (or the lack thereof) about various dimensions of the
end of life. At the same time, those discussions helped sharpen our under-
standing of the issues involved and ultimately enabled us to reach consensus

xiv PREFACE
on conclusions and recommendations that we hope will further shape the

national conversation on dying in America.
As committee co-chairs, we owe a deep debt of gratitude to all the
committee members for their time, energy, passion, commitment, and dili-
gence. In the end, we share a common goal of improving the individual and
highly personal experience of dying in America. We also want to thank the
IOM members and staff who provided invaluable support for this study.
Dr. Judith Salerno, who was Leonard D. Schaeffer executive officer of the
IOM when our work commenced, left the IOM to become CEO of the
Susan G. Komen Breast Cancer Foundation. Without missing a beat, she
sustained her commitment and dedication to the committee’s work, as evi-
denced by her active and continued participation in committee meetings,
discussions, and debates. We also want to thank Dr. Stephanie Pincus for
her commitment and important insights, as well as Thelma Cox, Bradley
Eckert, and Lauren Shern for their support. In addition, we were the benefi-
ciaries of the writing and insights of Neil and Vicki Weisfeld, who enabled
our discussion and debates to be framed in words with substance. Each of
these many individuals exceeded expectations and enabled our progress to
be sustained and successful. We also want to thank the numerous individu-
als who provided public testimony in person or in writing. The insights we
received were invaluable and helped ground us in reality. It is our hope that
this report will capture those insights and ultimately lead to improvements
in end-of-life care and the experience of dying for all.
Philip A. Pizzo, Co-Chair

David M. Walker, Co-Chair
Committee on Approaching Death:
Addressing Key End-of-Life Issues

Acknowledgments
Several individuals and organizations made important contributions

to the study committee’s process and to this report. The committee wishes
to thank these individuals, but recognizes that attempts to identify all and
acknowledge their contributions would require more space than is available
in this brief section.
To begin, the committee would like to thank the sponsor of this study.
Funds for the committee’s work were provided by a donor that wishes to
remain anonymous. The committee gratefully acknowledges the contribu-
tions of the many individuals and organizations that assisted in the conduct
of this study. Their perspectives were valuable in understanding critical
topics with regard to end-of-life care. The committee thanks those individu-
als who provided important presentations and oral testimony at its open
workshops. Appendix A lists each of these individuals and their affiliations.
Written testimony received from hundreds of individuals and organizations
also helped the committee understand the experiences of those who are
likely approaching death and their family members and caregivers, as well
as health care providers, and the perspectives of many stakeholder orga-
nizations. Appendix C provides a summary of this input. We would also
like to thank the following Institute of Medicine (IOM) staff for their valu-
able contributions to this study: Jim Banihashemi, Daniel Bethea, Marton
Cavani, Laura Harbold DeStefano, Chelsea Frakes, Greta Gorman, Jim
Jensen, Nicole Joy, Abbey Meltzer, and Jennifer Walsh. The committee is
grateful for the time, effort, and valuable information provided by all of
these dedicated individuals and organizations.
The committee would like to thank the authors whose commissioned
xv

xvi ACKNOWLEDGMENTS
papers added to the evidence base for this study: Haiden A. Huskamp,
Harvard Medical School, and David G. Stevenson, Vanderbilt University
School of Medicine; Melissa D. Aldridge and Amy S. Kelley, Icahn School of
Medicine at Mount Sinai; and Chris Feudtner, Wenjun Zhong, Jen Faerber,
and Dingwei Dai, Children’s Hospital of Philadelphia, and James Feinstein,
Northwestern University. The committee is also grateful to Bryan Doerries,
artistic director for Outside the Wire, and to T. Ryder Smith and Alex
Morf, who performed at an event sponsored by the IOM and the commit-
tee at the Chautauqua Institution. Great thanks are owed as well to Sherra
Babcock, who first extended the invitation for the IOM’s participation at
the Chautauqua Institution, and George Murphy, who was instrumental
in coordinating the logistics of the event. The committee is also grateful
to Maureen Valenza from The University of Texas MD Anderson Cancer
Center and Mira Engel from the Stanford University School of Medicine,
who helped to coordinate the committee’s off-site meetings.

Contents
ACRONYMS xxi
SUMMARY 1
1 INTRODUCTION 21
Why This Study Is Important Now, 24
Study Charge and Approach, 25
Study Scope, 29
17 Years of Progress, 32
Dying in America: 2014, 33
Research Needs, 39
Summary, 39
Organization of the Report, 40
References, 41
2 THE DELIVERY OF PERSON-CENTERED,

FAMILY-ORIENTED END-OF-LIFE CARE 45
Review of the Current Situation, 46
The Palliative Approach, 55
The Pursuit of Quality in Care Near the End of Life, 74
The Problem of Prognosis, 87
Family Caregivers, 92
Research Needs, 97
Findings, Conclusions, and Recommendation, 100
References, 104
xvii

xviii CONTENTS
3 CLINICIAN-PATIENT COMMUNICATION AND ADVANCE

CARE PLANNING 117
Background, 119
The Current State of Advance Care Planning and
What It Achieves, 124
Advance Care Planning and Treatment Preferences Among
Specific Population Groups, 141
Elements of Good Communication in Advance Care Planning, 157
Model Advance Care Planning Initiatives, 172
A Proposed Life Cycle Model of Advance Care Planning, 185
Research Needs, 187
References, 191
Annex 3-1: Advance Care Planning in the Context of Common
Serious Conditions, 211
Annex 3-2: Oregon Physician Orders for Life-Sustaining
Treatment (POLST) Form, 217
4 PROFESSIONAL EDUCATION AND DEVELOPMENT 221

Progress and Continuing Needs, 221
Impediments to Changing the Culture of Care Through
Education, 225
Roles and Preparation of Palliative Care Team Members, 237
References, 253
5 POLICIES AND PAYMENT SYSTEMS TO SUPPORT

HIGH-QUALITY END-OF-LIFE CARE 263
The Quality Challenges, 266
The Cost Challenges, 267
Financing and Organization of End-of-Life Care, 271
Perverse Incentives and Program Misalignment, 275
The Gap Between Services Paid for and What Patients and
Families Want and Need, 307
The Changing Health Care System: Financing and
Organization, 314
The Need for Greater Transparency and Accountability, 324
Research Needs, 326
References, 331

CONTENTS xix
6 PUBLIC EDUCATION AND ENGAGEMENT 345

The State of Public Knowledge About End-of-Life Care, 347
The Changing Climate for Discussion of Death and Dying, 352
Considerations for Public Education and Engagement
Campaigns, 355
Controversial Issues, 362
Recommendation, 370
References, 371
Annex 6-1: Selected Public Engagement Campaigns on
Health-Related Topics, 378
GLOSSARY 385
APPENDIXES
A Data Sources and Methods 391
B Recommendations of the Institute of Medicine’s Reports
Approaching Death (1997) and When Children Die (2003):
Progress and Significant Remaining Gaps 407
C Summary of Written Public Testimony 443
D Financing Care at the End of Life and the Implications of
Potential Reforms 455
E Epidemiology of Serious Illness and High Utilization of
Health Care 487
F Pediatric End-of-Life and Palliative Care: Epidemiology and
Health Service Use 533
G Committee Biographies 573


Acronyms
AACN American Association of Colleges of Nursing

AAHPM American Academy of Hospice and Palliative Medicine
AAMC Association of American Medical Colleges
ABIM American Board of Internal Medicine
ABMS American Board of Medical Specialties
ACA Patient Protection and Affordable Care Act
ACC associate certified chaplain
ACE Aid to Capacity Evaluation
ACGME Accreditation Council for Graduate Medical Education
ACL Administration for Community Living
ACO accountable care organization
ACOVE Assessing Care of Vulnerable Elders initiative
ADL activity of daily living
AGS American Geriatrics Society
AHRQ Agency for Healthcare Research and Quality
AoA Administration on Aging
APACHE Acute Physiology and Chronic Health Evaluation
APC Association of Professional Chaplains
APHA American Public Health Association
AP-NORC Associated Press-National Opinion Research Center
AQC Alternative Quality Contract
ARRA American Recovery and Reinvestment Act of 2009
ASHP American Society of Health-System Pharmacists
ASPE Assistant Secretary for Planning and Evaluation
xxi

xxii ACRONYMS
BCC board certified chaplain

BCCI Board of Chaplaincy Certification Inc.
BCC-PCC board certified chaplain-palliative care certified
BPCII Medicare Bundled Payments for Care Improvement
Initiative
BPS Board of Pharmacy Specialties
CAPC Center to Advance Palliative Care

CARE Consumer Assessments and Reports of End of Life
CARING Cancer, Admissions ≥2, Residence in a nursing home,
Intensive care unit admit with multiorgan failure, ≥2
Noncancer hospice Guidelines
CBO Congressional Budget Office
CCC complex chronic condition
CCCC Community Conversations on Compassionate Care
CCU critical care unit
CDC Centers for Disease Control and Prevention
CHCF California HealthCare Foundation
CHF congestive heart failure
CHIP Children’s Health Insurance Program
ChiPACC Children’s Program of All-Inclusive Coordinated Care for
Children and Their Families
ChiPPS Children’s International Project on Palliative/Hospice
Services
CLASS Community Living Assistance Services and Supports Act
CMS Centers for Medicare & Medicaid Services
COPD chronic obstructive pulmonary disease
CPR cardiopulmonary resuscitation
C-TraC Coordinated-Transitional Care
DNR do not resuscitate

DO doctor of osteopathy
DRG diagnosis-related group
ED emergency department
EHB essential health benefit
ELNEC End-of-Life Nursing Education Consortium
EMS emergency medical services
EMT emergency medical technician
ENABLE Educate, Nurture, Advise Before Life Ends intervention
EPEC Education in Palliative and End-of-life Care Program
EPSDT Early Periodic Screening, Diagnosis, and Treatment

ACRONYMS xxiii
ER emergency room
ESRD end-stage renal disease
FDA U.S. Food and Drug Administration

FFS fee-for-service
GDP gross domestic product

GRACE Geriatric Resources for Assessment and Care of Elders
HCAT Hopkins Competency Assessment Test

HCBS home- and community-based services
HCUP Healthcare Cost and Utilization Project
HEDIS Healthcare Effectiveness Data and Information Set
HHS U.S. Department of Health and Human Services
HIPAA Health Insurance Portability and Accountability Act
HIS Hospice Item Set
HITECH Health Information Technology for Economic and Clinical
Health Act
HMDCB Hospice Medical Director Certification Board
HPM hospice and palliative medicine
HPNA Hospice and Palliative Nurses Association
HQRP Hospice Quality Reporting Program
HRS Health and Retirement Study
IADL instrumental activity of daily living

ICD implantable cardioverter defibrillator or International
Classification of Diseases
ICU intensive care unit
IHI Institute for Healthcare Improvement
IPPC Initiative for Pediatric Palliative Care
KFF The Henry J. Kaiser Family Foundation

KID Kids’ Inpatient Dataset
MA Medicare Advantage
MEPS Medical Expenditure Panel Survey
MMA Medicare Prescription Drug Improvement and
Modernization Act of 2003
MOLST Medical Orders for Life-Sustaining Treatment
MSSP Medicare Shared Savings Program
NASW National Association of Social Workers

xxiv ACRONYMS
NBCHPN® National Board for Certification of Hospice and Palliative

Nurses
NCCN National Comprehensive Cancer Network
NCHS National Center for Health Statistics
NCI National Cancer Institute
NCOA National Council on Aging
NCP National Consensus Project for Quality Palliative Care
NCQA National Committee for Quality Assurance
NDS National Data Set
NEDS Nationwide Emergency Department Sample
NHDD National Healthcare Decisions Day
NHPCO National Hospice and Palliative Care Organization
NIH National Institutes of Health
NINR National Institute of Nursing Research
NPCRC National Palliative Care Research Center
NQF National Quality Forum
OECD Organisation for Economic Co-operation and

Development
P4P pay-for-performance
PACE Program of All-inclusive Care for the Elderly
PACT Patient Aligned Care Team
PaP Palliative Prognostic score
PBRN practice-based research network
PCLC Palliative Care Leadership Center
PCORI Patient-Centered Outcomes Research Institute
PCPI American Medical Association-Physician Consortium for
Performance Improvement
PCRC Palliative Care Research Cooperative Group
PDIA Project on Death in America
PDQ® Physician Data Query
PEACE Prepare, Embrace, Attend, Communicate, Empower
Project
PEC Pediatric Early Care program
PERCS Program to Enhance Relational and Communication Skills
PHIS Pediatric Health Information System
PIPS Prognosis in Palliative Care Study
POLST Physician Orders for Life-Sustaining Treatment
PPC pediatric palliative care
PPCN Pediatric Palliative Care Network
PPD Premier Perspective Database

ACRONYMS xxv
QALY quality-adjusted life-year

QIP Quality Incentive Program
RWJF Robert Wood Johnson Foundation
SGR sustainable growth rate

SNAP Supplemental Nutrition Assistance Program
SNF skilled nursing facility
SUPPORT Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatments
UTD Understanding Treatment Disclosure
VA U.S. Department of Veterans Affairs
WHO World Health Organization


Summary1
Health care delivery for people nearing the end of life has
changed significantly in the past two decades. Factors such as the
increasing number of elderly Americans, structural barriers in ac-
cess to care for certain populations, and a fragmented health care
system present challenges to providing quality care near the end
of life. There are, however, opportunities to improve this care,
including a better understanding of ways to improve individuals’
participation in advance care planning and shared decision mak-
ing, provisions of the Patient Protection and Affordable Care Act
(ACA), and efforts to develop quality measures to enable account-
ability. In light of these developments, the Institute of Medicine
was asked to produce a comprehensive report on the current state
of care for people of all ages who may be approaching death. The
report focuses specifically on the subset of people with “a serious
illness or medical condition who may be approaching death.”
For most people, death results from one or more diseases that
must be managed carefully over weeks, months, or even years.
Ideally, health care harmonizes with social, psychological, and
spiritual support as the end of life approaches. To achieve this goal,
care near the end of life should be person-centered, family-oriented,
and evidence-based. A palliative approach can offer patients near
1This summary does not include references. Citations for the discussion presented in the
summary appear in the subsequent report chapters.

2 DYING IN AMERICA
the end of life and their families the best chance of maintaining
the highest possible quality of life for the longest possible time.
Hospice is an important approach to addressing the palliative care
needs of patients with limited life expectancy and their families.
One of the greatest remaining challenges is the need for better
understanding of the role of palliative care among both the public
and professionals across the continuum of care so that hospice
and palliative care can achieve their full potential for patients and
their families.
As much as people may want and expect to be in control of
decisions about their own care throughout their lives, numerous
factors can work against realizing that desire. Many people near-
ing the end of life are not physically or cognitively able to make
their own care decisions. It is often difficult to recognize or iden-
tify when the end of life is approaching, making clinician-patient
communication and advance care planning particularly important.
Advance care planning conversations often do not take place be-
cause patients, family members, and clinicians each wait for the
other to initiate them. Understanding that advance care planning
can reduce confusion and guilt among family members forced to
make decisions about care can be sufficient motivation for ill indi-
viduals to make their wishes clear. Yet even when these important
conversations have occurred and family members are confident that
they know what the dying person wishes, making those decisions
is emotionally difficult, and families need assistance and support
in this role.
The education of health professionals who provide care to
people nearing the end of life has improved substantially in the past
two decades, although serious problems remain. Knowledge gains
have not necessarily been transferred to clinicians caring for people
with advanced serious illness who are nearing the end of life. In
addition, the number of hospice and palliative care specialists is
small, which means the need for palliative care also must be met
through primary care and through the other clinical specialties that
entail care for significant numbers of people nearing the end of life.
A substantial body of evidence shows that improved care for
people near the end of life is a goal within the nation’s reach.
Improving the quality of care for people with advanced serious
illness and focusing on their preferences may help stabilize both
total health care and social costs over time. In the end-of-life arena,
there are opportunities for savings by avoiding acute care services
that patients and families do not want and that are unlikely to ben-
efit them. The committee that produced this report believes these

SUMMARY 3
savings would free up funding for relevant supporting services—for

example, caregiver training, nutrition services, and home safety
modifications—that would ensure a better quality of life for people
near the end of life and protect and support their families.
More than one-quarter of all adults, including those aged
75 and older, have given little or no thought to their end-of-life
wishes, and even fewer have captured these wishes in writing
or through conversation. This is the case despite the results of
recent polls showing that Americans worry about the potential
high costs of care near the end of life and desire not to be a
burden—financial or otherwise—on family members. As the
baby boom generation ages, public interest in and acceptance of
information on death and dying may increase. Key considerations
in developing public education and engagement campaigns on this
topic include sponsorship and engagement of key stakeholders,
selection of target audiences, crafting and testing of messages, and
evaluation of results.
The recommendations presented in this report are intended
to address the needs of patients and families. They also should
assist policy makers, clinicians in various disciplines along with
their educational and credentialing bodies, leaders of health care
delivery and financing organizations, researchers, public and pri-
vate funders, religious and community leaders, advocates for better
care, journalists, and members of the interested public in learning
more about what constitutes good care for people nearing the
end of life and the steps necessary to achieve such care for more
patients and families. The committee offers five recommendations
in the areas of care delivery, clinician-patient communication and
advance care planning, professional education and development,
policies and payment systems, and public education and engage-
ment, which collectively offer a roadmap for progress in the na-
tion’s approach to end-of-life care and management.
Health care delivery for people nearing the end of life has changed
markedly since the Institute of Medicine (IOM) published Approaching
Death: Improving Care at the End of Life (1997) and When Children Die:
Improving Palliative and End-of-Life Care for Children and Their Families
(2003). Among the challenges to providing health care to this population
are the following factors:
• the increasing number of elderly Americans, including those with

some combination of frailty, significant physical and cognitive dis-
abilities, multiple chronic illnesses, and functional limitations;

4 DYING IN AMERICA
• growing cultural diversity of the U.S. population, which makes it

ever more important for clinicians to approach all patients as in-
dividuals, without assumptions about the care choices they might
make;
• structural barriers in access to care that disadvantage certain popu-
lation groups;
• a mismatch between the services patients and families need most
and the services they can readily obtain;
• failure of the availability of palliative care services to keep pace
with the growing demand;
• wasteful and costly systemic problems, including perverse financial
incentives, a fragmented care delivery system, time pressures that
limit communication, and a lack of service coordination across
programs; and
• the resulting unsustainable growth in costs of the current health
care delivery system over the past several decades.
These challenges are to some extent balanced by new opportunities for

improving the delivery of health care near the end of life:
• an increased understanding of ways to improve participation in ef-

fective advance care planning and shared decision making among
patients and families, including seriously ill children and adoles-
cents, who may be able to participate in end-of-life decision making
on their own behalf;
• various provisions of the Patient Protection and Affordable Care
Act (ACA) and other system reforms that affect the organization
and financing of health services;
• increasing use of communication and health information technolo-
gies, including electronic health records;
• growing recognition of and support for the role of caregivers; and
• efforts to develop quality measures to enable accountability.
To translate some of these opportunities into practice will require additional

research; however, the greater challenge is to incorporate into practice the
currently known evidence-based models of care.
STUDY CHARGE AND APPROACH

In view of these developments, the IOM was charged with conducting
a consensus study to produce a comprehensive report on the current state
of care for people of all ages who may be approaching death (see Box S-1).
To conduct this study, the IOM assembled the 21-member Committee
on Approaching Death: Addressing Key End-of-Life Issues, which com-

SUMMARY 5
prised experts in clinical care, aging and geriatrics, hospice and palliative
care, pediatrics, consumer advocacy, spirituality, ethics, communications,
clinical decision making, health care financing, law, and public policy. The
committee and the IOM recognize that many of the actions and systemic
BOX S-1
Study Charge
The Institute of Medicine (IOM) will conduct a consensus study that will
produce a comprehensive report on the current state of medical care for persons
of all ages with a serious illness or medical condition who may be approaching
death and who require coordinated care, appropriate personal communication (or
communication with parents or guardians for children), and individual and family
support. The committee will assess the delivery of medical care, social, and other
supports to both the person approaching death and the family; person-family-
provider communication of values, preferences, and beliefs; advance care plan-
ning; health care costs, financing, and reimbursement; and education of health
professionals, patients, families, employers, and the public at large. The study
will also explore approaches to advance the field. Specifically, the committee will:
1. Review progress since the 1997 IOM report Approaching Death: Improv-
ing Care at the End of Life and the 2003 IOM report When Children Die:
Improving Palliative and End-of-Life Care for Children and Their Families.
The committee will assess major subsequent events and recommenda-
tions that have been implemented as well as those that were not imple-
mented along with remaining challenges and opportunities.
2. Evaluate strategies to integrate care of those with serious illness or medi-
cal condition who may be approaching death into a person- and family-
centered, team-based framework. Demographic shifts, cultural changes,
fiscal realities, and the needs of vulnerable populations will be considered
as will advances in technology that affect the provision of care in different
settings, most notably in the home. Families are a vital component of the
health care team, and the financial and other ramifications for families and
society will be considered.
3. Develop recommendations for changes in policy, financing mechanisms
and payment practices, workforce development, research and measure-
ment, and clinical and supportive care. These recommendations will
align care with individual values, preferences, and beliefs and promote
high-quality, cost-effective care for persons with serious illness or medical
condition who may be approaching death, as well as with their families.
4. Develop a dissemination and communication strategy to promote public
engagement understanding, and action. This strategy will need to con-
sider the fears and anxieties surrounding care for patients who may be
approaching death as well as functional dependency, aging and death,
and cultural diversity in values, preferences and beliefs.

6 DYING IN AMERICA
changes that would improve care for people nearing the end of life would
also benefit many other patient groups, especially those with advanced
serious illnesses, severe chronic conditions, and the functional limitations
that come with frailty. However, the committee’s charge limited this study’s
focus specifically to the subset of people with “a serious illness or medical
condition who may be approaching death.”
This study was supported by a donor that wishes to remain anonymous
and whose identity was unknown to the committee. The sponsor played
no role in the selection of the committee’s co-chairs or members or in its
work. To carry out its charge, the committee reviewed evidence that has
accumulated since the two earlier IOM studies cited above were produced;
conducted public meetings and additional events to gather testimony from
interested individuals; held six meetings of its members; and, via an active
Web portal, received comments from more than 500 additional individuals.
In addition, papers were commissioned on the financing, utilization, and
costs of adult and pediatric end-of-life care. (See Appendix A for further
discussion of the data sources and methods for this study.)
STUDY FINDINGS AND RECOMMENDATIONS

The recommendations presented in this report are intended to address
the needs of patients and their families. They should also assist policy mak-
ers, clinicians in various disciplines along with their educational and creden-
tialing bodies, leaders of health care delivery and financing organizations,
researchers, public and private funders, religious and community leaders,
advocates for better care, journalists, and members of the interested public
in learning more about what constitutes good care for people nearing the
end of life and the steps necessary to achieve such care for more patients
and families. The committee offers five recommendations in the areas of
care delivery, clinician-patient communication and advance care planning,
professional education and development, policies and payment systems,
and public education and engagement, which collectively offer a roadmap
for progress in the nation’s approach to end-of-life care and management.
The Delivery of Person-Centered, Family-Oriented End-of-Life Care

For most people, and except for those who die suddenly as a conse-
quence of an accident or trauma, death results from one or more diseases
that must be managed carefully over weeks, months, or even years, through
many ups and downs. Ideally, health care harmonizes with social, psycho-
logical, and spiritual support as the end of life approaches. To achieve this
goal, care near the end of life should be person-centered, family-oriented,
and evidence-based.

SUMMARY 7
A palliative2 approach can offer patients near the end of life and their
families the best chance of maintaining the highest possible quality of life
for the longest possible time. The committee defined palliative care for this
report as care that provides relief from pain and other symptoms, that sup-
ports quality of life, and that is focused on patients with serious advanced
illness and their families. Hospice is an important approach to addressing
the palliative care needs of patients with limited life expectancy and their
families. For people with a terminal illness or at high risk of dying in the
near future, hospice is a comprehensive, socially supportive, pain-reducing,
and comforting alternative to technologically elaborate, medically centered
interventions. It therefore has many features in common with palliative
care.
Palliative care can begin early in the course of treatment for any seri-
ous illness that requires excellent management of pain or other distressing
symptoms, such as difficulty breathing or swallowing, and for patients of
any age. It can be provided in conjunction with treatments for cancer, heart
disease, or congenital disorders, for example. Palliative care is provided in
settings throughout the continuum of care. Often it is provided through
hospital-based consultation programs and outside the hospital through hos-
pice programs in the home, nursing home, assisted living facility, or long-
term acute care facility; palliative care outpatient clinics are also becoming
increasingly prevalent. Besides physician specialists in hospice and palliative
medicine, interdisciplinary palliative care teams include specialty advanced
practice nurses and registered nurses, social workers, chaplains, pharma-
cists, rehabilitation therapists, direct care workers, and family members.
A number of specialty professional associations encourage clinicians
to counsel patients about palliative care, but too few patients and families
receive this help in a timely manner. Palliative care programs and other
providers that care for patients nearing the end of life are not currently
required to measure and report on the quality of the end-of-life care they
provide, nor is there consensus on quality measures. These gaps are a
barrier to accountability. Only hospice programs report on the quality of
end-of-life care.
As yet, the evidence base is insufficient to enable establishment of a
validated list of the core components of quality end-of-life care across all
settings and providers. The committee proposes a list of at least 12 such
components (see Table S-1). They include frequent assessment of a patient’s
physical, emotional, social, and spiritual well-being; management of emo-
2 Basic palliative care is provided by clinicians in primary care and various specialties that
care for people with advanced serious illness, while specialty palliative care is provided by
specialists in hospice and palliative medicine, nursing, social work, chaplaincy, and other pal-
liative care fields.

8 DYING IN AMERICA
tional distress; referral to expert-level hospice or palliative care if needed

and desired; and regular revision of a care plan and access to services based
on the changing needs of the patient and family.
The committee paid special attention to the growing demand for fam-
ily caregiving. Family caregivers provide a wide range of essential and in-
creasingly complex services for people with advanced serious illnesses and
those nearing the end of life. Three in 10 U.S. adults are family caregivers
(although this number represents all caregivers, not just those caring for
someone near the end of life). This growing unpaid workforce generally is
invisible; undertrained; and stressed physically, emotionally, and financially.
When the 1997 IOM report Approaching Death: Improving Care at
the End of Life was published 17 years ago, hospice was well on its way
to achieving mainstream status, and palliative care was in the early stages
of development. Now, hospice is in the mainstream, and palliative care
is well established in larger hospitals and in the professions of medicine,
nursing, social work, and chaplaincy. Even so, one of the greatest remaining
challenges is the need for better understanding of the role of palliative care
among both the public and professionals across the continuum of care so
that hospice and palliative care can achieve their full potential for patients
of all ages with serious advanced illness.
TABLE S-1 Proposed Core Components of Quality End-of-Life Care

Component Rationale
Frequent assessment of the patient’s Interventions and assistance must be based on
physical, emotional, social, and accurately identified needs.
spiritual well-being
Management of emotional distress All clinicians should be able to identify distress
and direct its initial and basic management. This
is part of the definition of palliative care, a basic
component of hospice, and clearly of fundamental
importance.
Offer referral to expert-level People with palliative needs beyond those that
palliative care can be provided by non-specialist-level clinicians
deserve access to appropriate expert-level care.
Offer referral to hospice if the patient People who meet the hospice eligibility criteria
has a prognosis of 6 months or less deserve access to services designed to meet their
end-of-life needs.
Management of care and direct Care of people with serious illness may
contact with patient and family for require specialist-level palliative care physician
complex situations by a specialist- management, and effective physician management
level palliative care physician requires direct examination, contact, and
communication.

SUMMARY 9
TABLE S-1 Continued
Component Rationale
Round-the-clock access to Patients in advanced stages of serious illness often
coordinated care and services require assistance, such as with activities of daily
living, medication management, wound care,
physical comfort, and psychosocial needs. Round-
the-clock access to a consistent point of contact
that can coordinate care obviates the need to dial
911 and engage emergency medical services.
Management of pain and other All clinicians should be able to identify and direct
symptoms the initial and basic management of pain and
other symptoms. This is part of the definition of
palliative care, a basic component of hospice, and
clearly of fundamental importance.
Counseling of patient and family Even patients who are not emotionally distressed
face problems in such areas as loss of functioning,
prognosis, coping with diverse symptoms, finances,
and family dynamics, and family members
experience these problems as well, both directly
and indirectly.
Family caregiver support A focus on the family is part of the definition of
palliative care; family members and caregivers
both participate in the patient’s care and require
assistance themselves.
Attention to the patient’s social Person-centered care requires awareness of
context and social needs patients’ perspectives on their social environment
and of their needs for social support, including at
the time of death. Companionship at the bedside
at time of death may be an important part of the
psychological, social, and spiritual aspects of end-
of-life care for some individuals.
Attention to the patient’s spiritual The final phase of life often has a spiritual and
and religious needs religious component, and research shows that
spiritual assistance is associated with quality of
care.
Regular personalized revision of the Care must be person-centered and fit current
care plan and access to services based circumstances, which may mean that not all the
on the changing needs of the patient above components will be important or desirable
and family in all cases.
NOTE: The proposed core components of quality end-of-life care listed in this table were
developed by the committee. Most of the components relate to one of the domains in the
Clinical Practice Guidelines for Quality Palliative Care set forth by the National Consensus
Project for Quality Palliative Care.

10 DYING IN AMERICA
Recommendation 1. Government health insurers and care delivery pro-

grams as well as private health insurers should cover the provision of
comprehensive care for individuals with advanced serious illness who
are nearing the end of life.
Comprehensive care should
• be seamless, high-quality, integrated, patient-centered, family-

oriented, and consistently accessible around the clock;
• consider the evolving physical, emotional, social, and spiritual
needs of individuals approaching the end of life, as well as those
of their family and/or caregivers;
• be competently delivered by professionals with appropriate exper-
tise and training;
• include coordinated, efficient, and interoperable information trans-
fer across all providers and all settings; and
• be consistent with individuals’ values, goals, and informed
preferences.
Health care delivery organizations should take the following steps to

provide comprehensive care:
• All people with advanced serious illness should have access to

skilled palliative care or, when appropriate, hospice care in all set-
tings where they receive care (including health care facilities, the
home, and the community).
• Palliative care should encompass access to an interdisciplinary
palliative care team, including board-certified hospice and pal-
liative medicine physicians, nurses, social workers, and chaplains,
together with other health professionals as needed (including geri-
atricians). Depending on local resources, access to this team may
be on site, via virtual consultation, or by transfer to a setting with
these resources and this expertise.
• The full range of care that is delivered should be characterized
by transparency and accountability through public reporting of
aggregate quality and cost measures for all aspects of the health
care system related to end-of-life care. The committee believes that
informed individual choices should be honored, including the right
to decline medical or social services.

SUMMARY 11
Clinician-Patient Communication and Advance Care Planning

As much as people may want and expect to be in control of decisions
about their own care throughout their lives, numerous factors can work
against realizing that desire. Many people nearing the end of life are not
physically or cognitively able to make their own care decisions. It is often
difficult to recognize or identify when the end of life is approaching, mak-
ing clinician-patient communication and advance care planning particularly
important. Advance directives were developed to ensure that the decisions
people make when fully able are followed when they can no longer speak
for themselves. However, these checkbox-style documents have proven
inflexible, inconsistent with subsequent events and decisions, and for vari-
ous reasons both ineffective and unpopular. Electronic storage of advance
directives, statements of wishes, health care proxies, or other relevant
material—either in the patient’s electronic health record or in an external
database—holds promise for addressing a few of the current problems (see
also Recommendation 4).
The advance care planning process can start at any age and state of
health and should involve family members and clinicians. The discussion
centers on life values, goals, and treatment preferences; this knowledge,
gained in periodic revisiting of perceptions over time, provides a guide for
matching subsequent care decisions with the patient’s wishes and becomes
increasingly specific as illness progresses. Advance directives (forms) can
be useful when they are a component of these more comprehensive discus-
sions, but they must be flexible and give health care agents and clinicians
leeway to make decisions based on specific circumstances.
People who capture their care preferences in discussion or writing most
commonly choose care that focuses on improving quality of life. However,
the vast majority of people have not engaged in an end-of-life discussion
with their health care provider or family and do not have an advance direc-
tive. People who are younger, poorer, less educated, and nonwhite are less
likely to have such a document. Moreover, within all population groups,
end-of-life preferences vary widely. Clinicians and even close family mem-
bers cannot accurately guess or assume what an individual’s preferences
will be; they must ask the patient—that is, have “the conversation”—and
do so as often as necessary.
Advance care planning conversations often do not take place because
patients, family members, and clinicians each wait for the other to initiate
them. Understanding that advance care planning can reduce the burden
of confusion and guilt among family members forced to make decisions
about care can be sufficient motivation for ill individuals to make their
wishes clear. Yet even when these important conversations have occurred
and family members are confident that they know what the dying person

12 DYING IN AMERICA
wishes, making those decisions is emotionally difficult, and families need

assistance and support in this role.
The overall quality of communication between clinicians and patients
with advanced illness is poor, particularly with respect to discussing prog-
nosis, dealing with emotional and spiritual concerns, and finding the right
balance between hoping for the best and preparing for the worst. Ample
evidence documents structural and financial disincentives for having these
discussions. In the absence of adequate documented advance care planning,
the default decision is to treat a disease or condition, no matter how hope-
less or painful. A result of inadequate advance care planning, therefore, can
be more intensive treatment, as well as more negative impacts on family
members.
Because most people who participate in effective advance care plan-
ning choose maximizing independence and quality of life over living longer,
advance care planning can potentially save health care costs associated
with unnecessary and unwanted interventions. The misrepresentation of
the ACA provisions for advance care planning as “death panels” confused
many Americans about the benefits and goals of advance care planning,
which amount to ensuring that patients’ care preferences, insofar as pos-
sible, are honored. This caused the national dialogue to turn away from
how best to facilitate earlier and more meaningful discussions about end-
of-life preferences among individuals, families, and clinicians.
Recommendation 2. Professional societies and other organizations

that establish quality standards should develop standards for clinician-
patient communication and advance care planning that are measur-
able, actionable, and evidence-based. These standards should change as
needed to reflect the evolving population and health system needs and
be consistent with emerging evidence, methods, and technologies. Pay-
ers and health care delivery organizations should adopt these standards
and their supporting processes, and integrate them into assessments,
care plans, and the reporting of health care quality. Payers should tie
such standards to reimbursement, and professional societies should
adopt policies that facilitate tying the standards to reimbursement,
licensing, and credentialing to encourage
• all individuals, including children with the capacity to do so, to

have the opportunity to participate actively in their health care
decision making throughout their lives and as they approach death,
and receive medical and related social services consistent with their
values, goals, and informed preferences;
• clinicians to initiate high-quality conversations about advance
care planning, integrate the results of these conversations into the

SUMMARY 13
ongoing care plans of patients, and communicate with other clini-

cians as requested by the patient; and
• clinicians to continue to revisit advance care planning discussions
with their patients because individuals’ preferences and circum-
stances may change over time.
Professional Education and Development

The education of health professionals who provide care to people
nearing the end of life has improved substantially since the two previ-
ous IOM reports cited above were published, although serious problems
remain. Hospice and palliative medicine has become an established medi-
cal specialty. Other areas of progress include preparation of more faculty
members to teach palliative care, greater inclusion of some palliative care
content throughout clinical education, development of the professional
infrastructure of palliative care organizations and journals, and expansion
of the evidence base.
On the other hand, two important deficiencies persist. First, the knowl-
edge gains have not necessarily been transferred to clinicians caring for
people with advanced serious illness and nearing the end of life. Second,
the number of hospice and palliative care specialists is small, which means
the need for palliative care also must be met through primary care and
through the other clinical specialties that entail care for significant numbers
of people nearing the end of life (for example, cardiology, oncology, pulm-
onology, and nephrology).
In the committee’s judgment, three deeply ingrained educational pat-
terns obstruct further development of palliative care. First, hospice and
palliative care are generally absent from the usual curricula of medical and
nursing schools. One way to ensure attention to this topic in the under-
graduate curriculum, in graduate training, and among future health profes-
sionals would be to add more such content to licensure and certification
examinations.
A second negative pattern is the persistence of single-profession educa-
tion silos. This is problematic because palliative care embraces an interdis-
ciplinary, team-based approach.
A third pattern, most notable among physicians, is the lack of attention
to developing clinicians’ ability to talk effectively to patients about dying
and teaching them to take the time to truly listen to patients’ expression of
their concerns, values, and goals. Studies have established that physicians
can be taught the communication skills needed to provide good end-of-
life care, but few medical educators teach these skills. Approaching Death
(IOM, 1997) and When Children Die (IOM, 2003) specify the same four
domains of clinical competency in palliative care: scientific and clinical

14 DYING IN AMERICA
knowledge, interpersonal skills and knowledge, ethical and professional

principles, and organizational skills. These domains are as relevant today
as they were when those earlier reports were produced.
In addition to physician board certification in hospice and palliative
medicine, the fields of nursing, social work, and chaplaincy all have es-
tablished specialty certification programs in hospice and palliative care,
although the number of certified individuals in each of these professions
remains small relative to the need. Pharmacists also play important roles in
palliative care, although the pharmacy field has no comparable certification
program. From time to time, as needed, rehabilitation therapists specializ-
ing in occupational therapy, physical therapy, and speech-language pathol-
ogy become additional members of the palliative care team. At the bedside,
vital roles are played by direct care workers—a category that comprises
nursing assistants, home health aides, and personal care aides. Finally, and
in many ways most important, are family members. Even those who are not
fully engaged as caregivers may have considerable day-to-day responsibility
for patient management at home and coordination of care across services
and among care providers.
Recommendation 3. Educational institutions, credentialing bodies, ac-

crediting boards, state regulatory agencies, and health care delivery
organizations should establish the appropriate training, certification,
and/or licensure requirements to strengthen the palliative care knowl-
edge and skills of all clinicians who care for individuals with advanced
serious illness who are nearing the end of life.
Specifically,
• all clinicians across disciplines and specialties who care for people
with advanced serious illness should be competent in basic pal-
liative care, including communication skills, interprofessional col-
laboration, and symptom management;
• educational institutions and professional societies should provide
training in palliative care domains throughout the professional’s
career;
• accrediting organizations, such as the Accreditation Council for
Graduate Medical Education, should require palliative care educa-
tion and clinical experience in programs for all specialties respon-
sible for managing advanced serious illness (including primary care
clinicians);
• certifying bodies, such as the medical, nursing, and social work
specialty boards, and health systems should require knowledge,
skills, and competency in palliative care;

SUMMARY 15
• state regulatory agencies should include education and training

in palliative care in licensure requirements for physicians, nurses,
chaplains, social workers, and others who provide health care to
those nearing the end of life;
• entities that certify specialty-level health care providers should
create pathways to certification that increase the number of health
care professionals who pursue specialty-level palliative care train-
ing; and
• entities such as health care delivery organizations, academic med-
ical centers, and teaching hospitals that sponsor specialty-level
training positions should commit institutional resources to increas-
ing the number of available training positions for specialty-level
palliative care.
Policies and Payment Systems to Support High-Quality End-of-Life Care

A substantial body of evidence shows that greatly improved care for
people nearing the end of life is a goal within the nation’s reach. At the same
time, broad agreement exists across the political and ideological spectrum
that the United States must take steps to stabilize expenditures on health
care over time. In addressing care at the end of life, these goals can be
reached in tandem: evidence indicates that improving the quality of care
and the availability of services to meet patients’ and families’ most pressing
needs does not have to entail increased expenditures.
Improving quality of care for people with advanced serious illness and
focusing on their preferences may help stabilize total health care and social
costs over time. In the end-of-life arena, there are opportunities for sav-
ings by avoiding acute care services that patients and families do not want
and that are unlikely to benefit them. The committee believes these sav-
ings would free up funding for relevant supporting services—for example,
caregiver training, nutrition services, and home safety modifications—that
would ensure a better quality of life for people near the end of life and
protect and support their families.
What requires closer examination and reform is how those resources
are spent; the ways in which perverse financial incentives distort the cur-
rent system and impede high-quality care; how geographic variations in
expenditures can be reduced; and whether currently funded services are
well matched to the values, goals, preferences, diverse cultural differences,
expectations, and needs of patients and families, with ample evidence sug-
gesting they are not.
U.S. national health care expenditures totaled $2.8 trillion in 2012, or
about 17.2 percent of gross domestic product (GDP). Although the annual
increase in health care spending has slowed in recent years, the size of the

16 DYING IN AMERICA
sector and the possibility of continued future growth remain a significant

concern to analysts across the political spectrum. Of particular concern is
the likely growth in public spending on health care, a consequence in part
of growing numbers of people eligible for Medicare as baby boomers age
and for Medicaid as expansions under the ACA are implemented. These
two programs are especially important in the end-of-life context because
approximately 80 percent of U.S. deaths occur among people covered by
Medicare, and Medicaid is the principal payer for long-term services needed
by frail elderly individuals. The inefficiencies and payment incentives that
have evolved in these two programs create opportunities for savings that,
if recovered, could pay for a needed expansion in key supporting services
and stabilize the costs of care for these patients.
A major reorientation and restructuring of Medicare, Medicaid, and
other health care delivery programs is needed to craft a system of care de-
signed to ensure quality and address the central needs of all people nearing
the end of life and their families. Current financial incentives and a lack
of more appropriate alternatives drive a reliance on the riskiest and most
costly care settings. These incentives should be changed, and positive alter-
natives should be further developed.
In addition, many of the most urgent needs of these patients and their
families are not medical per se and require the design and implementation
of affordable support service programs that rigorously target the highest-
risk patients and families, and tailor services to specific family needs as they
evolve over time.
This approach, the essence of person-centeredness, is fundamental to
achieving the efficiency goals of public financing programs: on the one
hand, Medicare’s efforts to decrease utilization of unnecessary acute care
and on the other, Medicaid’s attempts to prevent unnecessary use of nurs-
ing homes. These goals cannot be met without improving the supporting
services that allow families to keep their loved ones safe and well cared for
in the setting where the vast majority of seriously ill patients want to be—at
home, which for some people may be an assisted living residence, nursing
home, or skilled nursing facility.
The U.S. health care system is changing significantly. This fact un-
derscores the need to establish additional accountability and transpar-
ency measures so that the effects of these changes—both intended and
unintended—on people nearing the end of life can be assessed. Further
changes in health care policy and legislation may be required to serve this
group of Americans well.
Recommendation 4. Federal, state, and private insurance and health

care delivery programs should integrate the financing of medical and

SUMMARY 17
social services to support the provision of quality care consistent with

the values, goals, and informed preferences of people with advanced
serious illness nearing the end of life. To the extent that additional
legislation is necessary to implement this recommendation, the admin-
istration should seek and Congress should enact such legislation. In
addition, the federal government should require public reporting on
quality measures, outcomes, and costs regarding care near the end of
life (e.g., in the last year of life) for programs it funds or administers
(e.g., Medicare, Medicaid, the U.S. Department of Veterans Affairs).
The federal government should encourage all other payment and health
care delivery systems to do the same.
Specifically, actions should
• provide financial incentives for

− medical and social support services that decrease the need for
emergency room and acute care services,
− coordination of care across settings and providers (from hos-
pital to ambulatory settings as well as home and community),
and
− improved shared decision making and advance care planning
that reduces the utilization of unnecessary medical services and
those not consistent with a patient’s goals for care;
• require the use of interoperable electronic health records that in-
corporate advance care planning to improve communication of
individuals’ wishes across time, settings, and providers, document-
ing (1) the designation of a surrogate/decision maker, (2) patient
values and beliefs and goals for care, (3) the presence of an advance
directive, and (4) the presence of medical orders for life-sustaining
treatment for appropriate populations; and
• encourage states to develop and implement a Physician Orders for
Life-Sustaining Treatment (POLST) paradigm program in accor-
dance with nationally standardized core requirements.
Medical and social services provided should accord with a person’s val-
ues, goals, informed preferences, condition, circumstances, and needs,
with the expectation that individual service needs and intensity will
change over time. High-quality, comprehensive, person-centered, and
family-oriented care will help reduce preventable crises that lead to
repeated use of 911 calls, emergency department visits, and hospital
admissions, and if implemented appropriately, should contribute to sta-
bilizing aggregate societal expenditures for medical and related social
services and potentially lowering them over time.

18 DYING IN AMERICA
Public Education and Engagement

The IOM’s 1997 report Approaching Death (p. 270) concludes that
“a continuing public discussion is essential to develop a better understand-
ing of the modern experience of dying, the options available to patients
and families, and the obligations of communities to those approaching
death.” Likewise, the IOM’s 2003 report When Children Die calls for
better communication about end-of-life issues in ways that encompass but
are somewhat broader than the activities of advance care planning. In the
years since these reports were published, the need for public education and
engagement concerning end-of-life care has not abated, and it is manifest
at several levels:
• at the societal level, to build support for constructive public policy

related to the organization and financing of care near the end of
life and for institutional and provider practices that ensure that this
care is high-quality and sustainable;
• at the community and family levels, to raise public awareness of
care options in the final phase of life, the needs of caregivers, and
the hallmarks of high-quality care; and
• at the individual level, to motivate and facilitate advance care plan-
ning and meaningful conversations with family, caregivers, and
clinicians about values, goals, and informed preferences for care.
More than one-quarter of all adults, including those aged 75 and

older, have given little or no thought to their end-of-life wishes, and even
fewer have captured these wishes in writing or through conversation. This
is the case despite the results of recent polls showing Americans harbor
several consistent worries about care near the end of life, centered around
its potential high costs and the desire not to be a burden—financial or
otherwise—on family members.
Expecting people to understand or have meaningful conversations
about end-of-life care issues presumes a common vocabulary; however,
surveys show people do not understand what palliative care is or what role
it plays near the end of life, do not have a clear concept of “caregiver,” and
may be confused by the various titles assigned by state laws to people who
serve as health care agents (such as surrogate decision makers or proxies).
Even some clinicians mistakenly confuse palliative care (care oriented to-
ward quality of life for people with serious illnesses) with hospice (a model
for delivering palliative care for people in their last months of life).
Events and activities since 1997 have improved the climate for discus-
sions of death and dying, and the topic is not as taboo as it was a few
decades ago. As the baby boom generation ages, public interest in and

SUMMARY 19
acceptance of information on death and dying may increase. Key consider-

ations in developing public education and engagement campaigns on this
topic include sponsorship and engagement of key stakeholders, selection of
target audiences, crafting and testing of messages, selection of the media
mix, and evaluation. Meanwhile, stories about dying—“good deaths” and
bad ones—appear regularly in the news media, in entertainment television
programming and movies, in books, and in social media.
Conflicts of values related to end-of-life care can be expected in a
heterogeneous nation such as the United States. People’s views on serious
illness and the end of life, bereavement and loss, and the duties of caregiv-
ers are deeply held and vary widely among individuals. While people may
differ in their opinions, it is important to disseminate accurate information
and evidence so that those opinions are based, to the extent possible, on the
facts as they are known and a candid assessment of their limits.
Recommendation 5. Civic leaders, public health and other govern-

mental agencies, community-based organizations, faith-based organi-
zations, consumer groups, health care delivery organizations, payers,
employers, and professional societies should engage their constituents
and provide fact-based information about care of people with advanced
serious illness to encourage advance care planning and informed choice
based on the needs and values of individuals.
Specifically, these organizations and groups should
• use appropriate media and other channels to reach their audiences,

including underserved populations;
• provide evidence-based information about care options and in-
formed decision making regarding treatment and care;
• encourage meaningful dialogue among individuals and their fami-
lies and caregivers, clergy, and clinicians about values, care goals,
and preferences related to advanced serious illness; and
• dispel misinformation that may impede informed decision making
and public support for health system and policy reform regarding
care near the end of life.
In addition,
• health care delivery organizations should provide information and

materials about care near the end of life as part of their practices
to facilitate clinicians’ ongoing dialogue with patients, families, and
caregivers;

20 DYING IN AMERICA
• government agencies and payers should undertake, support, and

share communication and behavioral research aimed at assessing
public perceptions and actions with respect to end-of-life care,
developing and testing effective messages and tailoring them to ap-
propriate audience segments, and measuring progress and results;
and
• health care professional societies should prepare educational ma-
terials and encourage their members to engage patients and their
caregivers and families in advance care planning, including end-of-
life discussions and decisions.
All of the above groups should work collaboratively, sharing successful

strategies and promising practices across organizations.
CONCLUSION
The committee identified persistent major gaps in care near the end of
life that require urgent attention from numerous stakeholder groups. Un-
derstanding and perceptions of death and dying vary considerably across
the population and are influenced by culture, socioeconomic status, and
education, as well as by misinformation and fear. Engaging people in defin-
ing their own values, goals, and preferences concerning care at the end of
life and ensuring that their care team understands their wishes has proven
remarkably elusive and challenging.
While the clinical fields of hospice and palliative care have become
more established, the number of specialists in these fields is too small, and
too few clinicians in primary and specialty fields that entail caring for indi-
viduals with advanced serious illness are proficient in basic palliative care.
Often clinicians are reluctant to have honest and direct conversations with
patients and families about end-of-life issues. Patients and families face ad-
ditional difficulties presented by the health care system itself, which does
not provide adequate financial or organizational support for the kinds of
health care and social services that might truly make a difference to them.
In sum, the committee believes that a patient-centered, family-oriented
approach to care near the end of life should be a high national priority and
that compassionate, affordable, and effective care for these patients is an
achievable goal.

Introduction
Every American has a stake in improving care for people nearing the
end of life. For patients and their families, that stake is immediate and
personal, and no care decisions are more profound. For the millions of
Americans who work with or within the health care sector—clinicians,
clergy, other direct care providers, and support staff—the stake is a matter
of professional commitment and responsibility. Health system managers,
payers, and policy makers also have a professional stake in the provision of
end-of-life care that is not only high quality but also affordable and sustain-
able. All Americans should be able to expect that they and their loved ones
will receive the care and services they need at the end of their lives. Mean-
while, the number of Americans with some combination of aging, frailty,
dependence, and multiple chronic conditions is rising, placing growing
pressure on the health system at every level and on every stakeholder group.
As this report shows, the advances in medicine and health care that
today help people survive advanced illnesses and serious injuries have been
accompanied by several collateral effects:
• growing frustration among health care professionals at the mis-

match between their training and the complex needs of the people
they serve;
• a high—and escalating—financial price, which includes costs for
interventions that many people near the end of life do not want
and that may be unlikely to benefit them; and
21

22 DYING IN AMERICA
• a perception among many Americans that the health care system is

not designed to meet their most pressing needs and priorities, many
of which involve not medical care but social services.
This study was conducted by the Institute of Medicine (IOM) Com-

mittee on Approaching Death: Addressing Key End-of-Life Issues. While
opinions vary regarding many dimensions of the nation’s health care sys-
tem, the committee reached the conclusion that substantially higher-quality,
compassionate, yet affordable and sustainable care for people with ad-
vanced illnesses is a goal within reach. We recognize the broad agreement
across many political fronts that the nation must stabilize expenditures on
health care. In the end-of-life context, however, we believe that goal must
be achieved in tandem with the provision of quality care that offers patients
and families both compassion and choice.
This is a challenging agenda; however, this report makes clear that ef-
fective, evidence-based strategies for improving care for people nearing the
end of life are already known. For the most part, money currently in the
health care system can be reallocated to implement those strategies and even
add some of the much-needed social supports now unavailable. In short, the
committee envisions an approach to care for people near the end of life that
is both high quality and compassionate; delivers value to patients, families,
and the health system; and is sustainable and affordable.
Much has been written about the high costs of care in the last year of
life. Persuasive arguments have been made, however, that it is misleading to
look back at these expenditures and attribute them all to “the high cost of
dying.” Methodologically, it is difficult to define the “end of life”—which,
generally entailing acute illness, necessarily involves intense treatment—un-
til the patient has died. People who survive these serious episodes do not
appear in these calculations (Neuberg, 2009). Worse, such arguments imply
that the sickest and most vulnerable people in society (some of whom will
die, but many of whom will not) are somehow unworthy of investment.
Moreover, costs of care in the final phase of life vary from one hospital
region to another by large amounts. Yet people treated in high-cost locales
live no longer than people who are equally ill but whose care costs con-
siderably less (Dartmouth Institute for Health Policy and Clinical Practice,
undated; see also Appendix E).
The key question for health care policy makers and analysts, however,
should center not on costs, but on whether people nearing the end of life are
receiving high-quality, effective health and supporting services and whether
the mix of services available to them reflects their needs and preferences. As
detailed in this report, evidence suggests a mismatch between the services
most readily available to people near the end of life (acute care) and what
they most often say they want (supportive services) (Gruneir et al., 2007).

INTRODUCTION 23
14
2
Both chronic conditions and
56 functional limitations
36
Functional limitations only
Chronic conditions only
2 No chronic conditions or
functional limitations
48 31
11
U.S. Population (%) U.S. Health Care Costs (%)
FIGURE 1-1 Population and health care costs for people with chronic conditions
and functional limitations, 2010-2011.
SOURCE: Appendix E, Table E-1.
Meanwhile, a large number of Americans have chronic conditions or

functional limitations—or both—which are associated with higher needs
and, as a result, health care costs (see Figure 1-1). The important message
of this figure is that the nearly one-half of Americans (48 percent) who have
no chronic condition or functional limitation account for only 14 percent
of U.S. health care costs, whereas the 14 percent of Americans who have
both chronic conditions and functional limitations account for 56 percent
of these costs. Two-thirds of the population with the highest health care
costs (top 5 percent spenders) are under age 65 and therefore not part of the
Medicare population; further, according to an analysis commissioned for
this study (see Appendix E, Figure E-12), the proportion of Medicare spend-
ing in the year prior to death remained stable from 1978 to 2006 (most
recent comparable data) despite rapidly rising health care costs overall.
Physicians might be assumed to be in a better position than the aver-
age nonclinician to judge the likely value of services provided near the end
of life.1 It is therefore telling that when it comes to their own care, many
1 “Value should always be defined around the customer, and in a well-functioning health care
system, the creation of value for patients should determine the rewards for all other actors in
the system. Since value depends on results, not inputs, value in health care is measured by the
outcomes achieved, not the volume of services delivered” (Porter, 2010, p. 2477).

24 DYING IN AMERICA
physicians choose much less aggressive treatments than they offer their pa-
tients. A 1997 study comparing 78 primary care faculty and residents with
831 of their patients found that the physicians were much less likely than
the patients to want five of six specific treatments if they were terminally
ill (Gramelspacher et al., 1997). Fifty-nine percent of the physicians had
“least aggressive” treatment preferences, while 31 percent had “moderate”
treatment preferences.
Although few scientific studies have addressed the subject, a personal
essay by Kenneth Murray, M.D., suggests that doctors “don’t die like the
rest of us. What’s unusual about them is not how much treatment they get
compared to most Americans, but how little”2 (Murray, 2011). In a survey
of some 765 physicians, most (more than 80 percent) wanted pain medica-
tions, one-quarter to one-third wanted antibiotics or intravenous (IV) hy-
dration, and fewer than 10 percent wanted cardiopulmonary resuscitation
or mechanical ventilation (Gallo et al., 2003). Likewise, a 2011 survey of
some 500 board-certified U.S. physicians found that 96 percent believed “it
is more important to enhance the quality of life for seriously ill patients,
even if it means a shorter life,” while only 4 percent believed it is more
important to extend life “through every medical intervention possible”
(Regence Foundation and National Journal, 2011, p. 2).
Because people understand the world largely in terms of personal ex-
perience, families that have suffered the painful loss of a loved one tend to
attribute any aspects of care that went wrong or needed improvement to
factors of which they have direct knowledge—the drastic turn of the illness,
the conflicting requirements of various care settings, confusion about what
clinicians were telling them, the decisions they made when events felt out of
control. People in these situations may not recognize that their difficulties
resulted largely from systemic problems in need of fundamental solutions.
Addressing such systemic factors is the aim of this report.
WHY THIS STUDY IS IMPORTANT NOW

In contemplating an addition to the considerable body of existing work
on this topic, the IOM took note of a number of contextual factors that
make this new study particularly timely:
2 Dr.Murray is a retired clinical assistant professor of family medicine at the University of

Southern California. His essay, first published in Zócalo Public Square (Murray, 2011), has
been republished in The Best American Essays 2012 and widely excerpted and republished
in the popular media.

INTRODUCTION 25
• the increasing number of elderly Americans, including those with

some combination of frailty, significant physical and cognitive dis-
abilities, multiple chronic illnesses, and functional limitations;
• growing cultural diversity of the U.S. population, which makes it
ever more important for clinicians to approach all patients as in-
dividuals, without assumptions about the care choices they might
make;
• structural barriers in access to care that disadvantage certain popu-
lation groups;
• a mismatch between the services patients and families need most
and the services they can readily obtain;
• palliative care services that do not keep pace with the growing
demand;
• wasteful and costly systemic problems, including perverse financial
incentives, a fragmented care delivery system, time pressures that
limit communication, and a lack of service coordination across
programs; and
• the resulting unsustainable growth in costs of the current system
over the past several decades.
STUDY CHARGE AND APPROACH

To conduct this study, the IOM assembled a 21-member committee
comprising experts in clinical care, aging and geriatrics, hospice and pal-
liative care, pediatrics, consumer advocacy, spirituality, ethics, communica-
tions, clinical decision making, health care financing, law, and public policy
(see Appendix G for biographical sketches of the committee members).
Co-chairs of the committee were Philip A. Pizzo, M.D., former dean of the
Stanford University School of Medicine, and David M. Walker, former U.S.
comptroller general. The charge to the committee is presented in Box 1-1.
This study was supported by a donor that wishes to remain anonymous
and whose identity was unknown to the committee. The sponsor played
no role in the selection of the co-chairs or members of the committee or in
the committee’s work.
The committee’s recommendations are based on both scientific evidence
and expert judgment. In preparing its recommendations, the committee re-
viewed the most recent, powerful, and salient evidence that should reshape
the U.S. approach to care near the end of life. Because so many aspects of
the nation’s health care system are undergoing often dramatic changes, in
part as a result of the Patient Protection and Affordable Care Act of 2010,
the committee had to rely in some cases on preliminary evidence rather
than definitive reports. The committee also sought to achieve a deeper un-
derstanding of the evidence through the voices and stories of people willing

26 DYING IN AMERICA
BOX 1-1
Study Charge
The Institute of Medicine (IOM) will conduct a consensus study that will
produce a comprehensive report on the current state of medical care for persons
of all ages with a serious illness or medical condition who may be approaching
death and who require coordinated care, appropriate personal communication (or
communication with parents or guardians for children), and individual and family
support. The committee will assess the delivery of medical care, social, and other
supports to both the person approaching death and the family; person-family-
provider communication of values, preferences, and beliefs; advance care plan-
ning; health care costs, financing, and reimbursement; and education of health
professionals, patients, families, employers, and the public at large. The study
will also explore approaches to advance the field. Specifically, the committee will:
1. Review progress since the 1997 IOM report Approaching Death: Improv-
ing Care at the End of Life and the 2003 IOM report When Children Die:
Improving Palliative and End-of-Life Care for Children and Their Families.
The committee will assess major subsequent events and recommenda-
tions that have been implemented as well as those that were not imple-
mented along with remaining challenges and opportunities.
2. Evaluate strategies to integrate care of those with serious illness or medi-
cal condition who may be approaching death into a person- and family-
centered, team-based framework. Demographic shifts, cultural changes,
fiscal realities, and the needs of vulnerable populations will be considered
as will advances in technology that affect the provision of care in different
settings, most notably in the home. Families are a vital component of the
health care team, and the financial and other ramifications for families and
society will be considered.
3. Develop recommendations for changes in policy, financing mechanisms
and payment practices, workforce development, research and measure-
ment, and clinical and supportive care. These recommendations will
align care with individual values, preferences, and beliefs and promote
high-quality, cost-effective care for persons with serious illness or medical
condition who may be approaching death, as well as with their families.
4. Develop a dissemination and communication strategy to promote public
engagement understanding, and action. This strategy will need to con-
sider the fears and anxieties surrounding care for patients who may be
approaching death as well as functional dependency, aging and death,
and cultural diversity in values, preferences and beliefs.
to share their current, direct experiences. Thus, in addition to holding six

meetings among its members, the committee received input from patients,
family members, clinicians, and advocates through public workshops and
additional activities and through an active Web portal to which 578 com-
ments were submitted (see Appendix A).

INTRODUCTION 27
In conducting this study, the committee used the definitions for basic
palliative care, end-of-life care, hospice, palliative care, and specialty pallia-
tive care shown in Box 1-2. Additional definitions relevant to this study are
provided in the glossary following Chapter 6. This study also was guided
by the principles listed in Box 1-3.
The findings and recommendations presented in this report are in-
tended first and foremost to address the needs of patients and families. They
should also assist policy makers, clinicians in various disciplines and their
educational and credentialing bodies, leaders of health care delivery and
financing organizations, researchers, public and private funders, religious
and community leaders, advocates for better care, journalists, and members
BOX 1-2
Key Definitions
• B asic palliative care: Palliative care that is delivered by health care profes-
sionals who are not palliative care specialists, such as primary care clinicians;
physicians who are disease-oriented specialists (such as oncologists and
cardiologists); and nurses, social workers, pharmacists, chaplains, and others
who care for this population but are not certified in palliative care.
• End-of-life care: Refers generally to the processes of addressing the medical,
social, emotional, and spiritual needs of people who are nearing the end of
life. It may include a range of medical and social services, including disease-
specific interventions as well as palliative and hospice care for those with
advanced serious conditions who are near the end of life.
• Hospice: “A service delivery system that provides palliative care for patients
who have a limited life expectancy and require comprehensive biomedical,
psychosocial, and spiritual support as they enter the terminal stage of an ill-
ness or condition. It also supports family members coping with the complex
consequences of illness, disability, and aging as death nears” (NQF, 2006,
p. 3).
• Palliative care: Care that provides relief from pain and other symptoms, sup-
ports quality of life, and is focused on patients with serious advanced illness
and their families. Palliative care may begin early in the course of treatment for
a serious illness and may be delivered in a number of ways across the con-
tinuum of health care settings, including in the home, nursing homes, long-term
acute care facilities, acute care hospitals, and outpatient clinics. Palliative care
encompasses hospice and specialty palliative care, as well as basic palliative
care.
• Specialty palliative care: Palliative care that is delivered by health care
professionals who are palliative care specialists, such as physicians who are
board certified in this specialty; palliative-certified nurses; and palliative care–
certified social workers, pharmacists, and chaplains.

28 DYING IN AMERICA
BOX 1-3
Guiding Principles for This Study
• A ll people with advanced illness who may be approaching the end of life are
entitled to access to high-quality, compassionate, evidence-based care, con-
sistent with their wishes, that can reasonably be expected to protect or improve
the quality and length of their life. Ensuring that access and delivering that care
humanely and respectfully is a central clinical and ethical obligation of health
care professionals and systems.
• “All people with advanced illness” encompasses all age groups—from neo-
nates, to children, to adolescents, to adults, to the elderly.
• “Patient-centered” and “family-oriented” care is designed to meet physical, cog-
nitive, social, emotional, and spiritual needs, regardless of a patient’s age or
infirmity; it takes into account culture, traditions, values, beliefs, and language;
and it evolves with patient and family needs.
• In this report, “family” means not only people related by blood or marriage but
also close friends, partners, companions, and others whom patients would
want as part of their care team. As palliative care leader Ira Byock expresses
it, family includes all those “for whom it matters.”*
• This report’s use of the term “vulnerable populations” goes beyond the conven-
tional usage, which applies to people from ethnic, cultural, and racial minori-
ties; people with low educational attainment or low health literacy; and those
in prisons or having limited access to care for geographic or financial reasons.
Here it includes people with serious illnesses, multiple chronic diseases, and
disabilities (physical, mental, or cognitive); the frail elderly; and those without
access to needed health services. In this latter sense, almost all people near-
ing the end of life can rightly be considered a “vulnerable population.”
• Near the end of life, clinical care is not a person’s sole priority. Patients and
families may be deeply concerned with existential or spiritual issues, includ-
ing bereavement, and with practical matters of coping. Appropriate support in
these areas is an essential component of good care.
• The knowledge and skills that enable effective care and communication with
patients and families are needed across many different health professions,
among generalists as well as specialists. Honest and transparent communi-
cation about death and dying—between loved ones, between patients and
clinicians, and between policy makers/media and the public—is essential to
creating a truly compassionate context for high-quality end-of-life care.
• Measurement of the quality of care for the sickest and most vulnerable patients
and their families is necessary to ensure access to and receipt of the highest-
quality care, especially given current intense pressures to contain costs. Mea-
surement systems should be transparent and foster accountability of services
and programs.
• Innovative, well-designed biomedical, clinical, behavioral, organizational, and
health policy research is needed to further improve patient-centered outcomes
and ensure system sustainability.
*See http://www.dyingwell.org/springer.htm (accessed December 16, 2014).

INTRODUCTION 29
of the interested public in learning more about what constitutes good care
for people nearing the end of life and the steps necessary to achieve such
care for more patients and families.
In taking on this issue at this time, the committee follows in the path of
many compassionate and thoughtful people, including the members of past
IOM committees whose work resulted in the following reports:
• Approaching Death: Improving Care at the End of Life (IOM,

1997);
• Ensuring Quality Cancer Care (IOM, 1999);
• Improving Palliative Care for Cancer (IOM, 2001b);
• When Children Die: Improving Palliative and End-of-Life Care for
Children and Their Families (IOM, 2003);
• Relieving Pain in America: A Blueprint for Transforming Preven-
tion, Care, Education, and Research (IOM, 2011); and
• Delivering High-Quality Cancer Care: Charting a New Course for
a System in Crisis (IOM, 2013).
In addition, the IOM’s series of reports on improving the quality of

care (especially Crossing the Quality Chasm [IOM, 2001a] and the work
of the Roundtable on Value & Science-Driven Health Care) provide guid-
ance and inspiration for working toward a system that provides the right
care—as determined by patients and families together with their health
care team—when and where it is needed at a price that is affordable and
sustainable. This committee’s aim was to build on this past work and to
bring compassionate and pragmatic new thinking to bear on the persistent
problems affecting care for Americans living with advanced illnesses and
nearing the end of life.
STUDY SCOPE
This committee’s charge (see Box 1-1) was to examine “medical care
for persons of all ages with a serious illness or medical condition who may
be approaching death.” While this may appear to be a clearly defined as-
signment, establishing parameters for the study was actually rather com-
plicated. On the one hand, it was obviously infeasible for the committee to
examine the entire spectrum of care for chronic illnesses from their earliest
stages and manifestations or the full dimensions of frailty. This constraint
imposed one limitation on the scope of the study, even though subsets of
individuals with progressive chronic and debilitating conditions are highly
relevant to the consideration of care in the final phase of life. On the other
hand, the committee did not want to define the population of interest too
narrowly or arbitrarily and thereby exclude people—or their families or

30 DYING IN AMERICA
clinicians—who do not consider themselves to be “approaching death.”

Further, overly narrow definitions of “who is dying” fail any pragmatic test,
as the uncertainties of making prognoses amply attest.
In 1982, the Medicare Hospice Benefit set an eligibility criterion of a
6-month prognosis if the disease runs its normal course. The legislation
never defined whether this meant median life expectancy or that all persons
must be dead within 6 months. Given the inherent limitations of prognos-
tication, health care providers are hard pressed to say which individual
patients will live 6 months or less. If the policy that all persons who enter
hospice must have illnesses that are certain to be fatal within 6 months is
strictly enforced, access to hospice will be extremely limited. On the other
hand, expanding hospice services to include persons who would live for
years would have important financial implications. Thirty years ago, the
6-month limit might have had some, although weak, medical justification
because hospices served primarily people with cancer whose disease pro-
gression could be projected fairly accurately. Today hospices serve people
with many different diagnoses that follow various and often unpredictable
trajectories. With good care, even people who are very ill may survive for
many months or several years. The time frame for illnesses or conditions
that ultimately will prove fatal is often considerably longer than 6 months
and proceeds at a different pace for different individuals.
Assigning people to an “end-of-life” or “terminally ill” category—
especially given prognostic uncertainty—also creates undesirable social
and personal challenges. Although patients, families, and clinicians may
not consider particular individuals—or themselves—to be “dying” (thus,
the often preferred formulation “living with cancer” or “living with heart
disease”), they still need the kinds of intense management of pain and other
symptoms, psychological support, ancillary services, and family supports
provided by hospice and palliative care programs. The committee believes
the timing of death is a much less important consideration than whether
the person is living with a set of conditions that are now causing distress
or disability and thus needs services that address those problems, as deter-
mined in the context of need and not prognosis. The real challenge is to
design models of quality and affordable care that fit the variable trajectories
and needs of seriously ill people who are nearing the end of life and their
family caregivers.
The same definitional quandary faced the authors of the 1997 IOM
study Approaching Death, among many others (Hui et al., 2012). That
committee, like this one, recognized that its recommendations applied
to people “for whom death is imminent and those with serious, eventu-
ally fatal illnesses who may live for some time” (IOM, 1997, p. 7). That
committee’s sense however, was that “those referred to as dying are often
thought to be likely to die within a few days to several months,” and it

INTRODUCTION 31
generally focused its attention on that group, rather than on people with
“an incurable, terminal or fatal illness . . . whose deaths are less predictable
and might not come for years” (IOM, 1997, p. 27).
The present committee’s resolution of this definitional dilemma is dif-
ferent in character from that of the practicing clinician, confronted with
an increasing number of patients with not one but several serious and
debilitating conditions that have uncertain prognoses and trajectories. For
clinicians, the principle of patient-centeredness must remain paramount.
Even though clinicians may be unable to predict the precise course of an
individual patient’s illnesses,3 they can nevertheless demonstrate “quali-
ties of compassion, empathy, and responsiveness to the needs, values, and
expressed preferences” of the individuals and families in their care (IOM,
2001a, p. 48).
This report similarly concentrates on the population whose medical
condition puts them at risk of death in some loosely defined “near future.”
The committee recognizes that many of the actions and systemic changes
that would improve care for people nearing the end of life would be of
broad benefit to many other patient groups, especially those with advanced
illnesses and the functional limitations that accompany frailty, helping
them retain the highest possible degree of functioning and quality of life
in their remaining lifetimes, however long they may be. Examples of the
improvements the committee recommends that would affect large num-
bers of patients are those supporting evidence-based services, strengthened
patient-clinician relationships, coordination of services, patient-centered
and family-oriented care, and the free flow of information, as well as other
system features considered hallmarks of high-quality care (IOM, 2001a).
However, the charge to the committee did not encompass this broader
patient population.
Finally, although the constellation of health challenges leading to death
commonly confront people of advancing age, the committee understood the
problem of end-of-life care to be relevant throughout the life cycle: infants
die, most often of heritable or congenital disorders or sudden infant death
syndrome; injuries are the leading cause of death for children; by adoles-
cence and young adulthood, accidents and violence cause more than 70
percent of deaths; by age 45, cancers are the leading cause of death; and
by age 65, heart disease is the leading killer (Heron, 2013). No age group
is immune from death. The improvements in care and communication that
would help population groups most commonly facing the end of life must,
therefore, be extended to those of all ages.
3 A recent review of the supportive and palliative care oncology literature found 386 articles
(from either 2004 or 2009) that used the term “end of life,” but not one provided a definition
(Hui et al., 2012).

32 DYING IN AMERICA
17 YEARS OF PROGRESS
While much more progress is needed to achieve the vision of an end-of-
life care system characterized by high-quality care, compassion, economic
value, sustainability, and affordability, the committee wishes to acknowl-
edge and even celebrate the progress made over the past decade and a half.
When the Approaching Death and When Children Die reports were pub-
lished in 1997 and 2003, respectively, they contained a total of 19 recom-
mendations. These recommendations are summarized in Appendix B, along
with information on subsequent progress and remaining gaps.
A great many improvements in end-of-life care resulted from aggressive
public- and private-sector efforts. Notable among these was the work of two
large foundations—the Robert Wood Johnson Foundation (RWJF)4 and the
Soros Foundation through its Project on Death in America (PDIA)5—which
together provided millions of dollars to support professional education;
research on health services delivery; the creation of models of care and
their diffusion; and public engagement, media, and policy initiatives. Doz-
ens of national and regional foundations made important contributions as
well. The results of the Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatments (SUPPORT) galvanized many of these
efforts (Connors et al., 1995). In brief, this large and rigorous multiyear
project demonstrated unequivocally that the “solutions” to the problem of
end-of-life care that had been promoted for years would not change clinical
practice or the experiences of dying people, in part because of the powerful
incentives aligned against them. New approaches were needed.
Major professional and provider organizations, advocacy organiza-
tions, and local coalitions have actively supported care improvements and
public awareness. For example, in a policy statement released in Novem-
ber 2013, the American Public Health Association (APHA) addressed care
for people near the end of life from a public health perspective, calling
the burden experienced by those with advanced life-limiting conditions
a “public health problem” (APHA, 2013). APHA recommended that
the needs of these individuals be addressed through improvements in
pain management, advance care planning, use of hospice and palliative
4 RWJF’s 10-year, $170 million investment in improving end-of-life care relied on a three-
part strategy: improving clinicians’ knowledge of and skills in care for the dying, encouraging
institutional and policy changes that would facilitate the provision of good end-of-life care,
and engaging a broad range of social institutions and leaders in creating a supportive envi-
ronment for change (http://www.rwjf.org/content/dam/farm/reports/reports/2011/rwjf69582
[accessed December 16, 2014]).
5 “The mission of PDIA is to understand and transform the culture and experience of dying
through initiatives in research and scholarship, the arts and humanities, through innovations
in provision of care, through public and professional education and through public policy”
(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1282198 [accessed December 16, 2014]).

INTRODUCTION 33
care, care coordination, health professional education and training (at

both the generalist and specialty levels), and improvements to hospice
and palliative care financing and policy. As another example, RWJF’s
Last Acts campaign involved more than 800 partner organizations, from
individual religious congregations and hospices, to the National Associa-
tion for the Advancement of Colored People (NAACP), to the American
Medical Association (De Milto, 2002). Thousands of individual clinicians,
researchers, and community leaders worked to move the field forward.
State government offices and agencies, many of them participants in
the RWJF-funded Community-State Partnerships to Improve End-of-Life
Care, achieved various policy advances, as did the federal government, es-
pecially through the Health Care Financing Administration (now the Cen-
ters for Medicare & Medicaid Services [CMS]), the Agency for Healthcare
Research and Quality, and the National Institute of Nursing Research
within the National Institutes of Health (NIH).
DYING IN AMERICA: 2014

Several key aspects of dying in America today should be noted as con-
text for this study.
Site of Death
“Death is not what it used to be,” the Approaching Death report ob-
served in 1997. “In the United States, death at home in the care of family
has been widely superseded by an institutional, professional, and techno-
logical process of dying” (IOM, 1997, p. 33). Although the proportion of
people who die in hospitals has declined in recent years, the last few months
of life are characterized by frequent hospital and intensive care stays; as
noted, enrollment in hospice often occupies just the last few days of life.
Among Medicare fee-for-service beneficiaries, the percentage who died in
acute care hospitals declined from 33 percent in 2000 to 25 percent in 2009
(Goodman et al., 2013; Teno et al., 2013). Also in 2009, one-third of Medi-
care deaths occurred in private residences, 28 percent in nursing homes, and
approximately 14 percent elsewhere (Teno et al., 2013).
These percentages vary from one locale to another, depending on lo-
cal conditions and the availability of nonhospital services, such as nursing
homes (Gruneir et al., 2007). The growing number of deaths in nursing
homes—approaching 40 percent in Minnesota and Rhode Island as of
2007—is difficult to track, because many studies omit these residents. Nev-
ertheless, the pattern of institution-based death appears to have changed
to a considerable extent, in part because of the increased availability of
hospice services, which help families provide appropriate care at home near

34 DYING IN AMERICA
the end of life. Dying at home remains a consistent preference in population

surveys and patient interviews (Teno et al., 2013).
Epidemiologic Patterns
Two and a half million Americans died in 2011, according to the
most recent data from the Centers for Disease Control and Prevention
(Hoyert and Xu, 2012). The nation continues to make progress on key
mortality figures since the 1997 Approaching Death report was released
(see Table 1-1). In general, the dramatic gains in life expectancy that be-
gan around 1900 have continued. Life expectancy was 4.8 years longer
for women than for men in 2011, although the gap between the sexes has
been shrinking (Hoyert and Xu, 2012). Life expectancy for whites (non-
Hispanic) was 2.4 years less than that for Hispanics and 3.7 years more
than that for blacks.
Table 1-2 presents information about deaths among U.S. children.
Infant mortality remains a serious national public health concern: 54 of
the world’s 224 countries have lower estimated 2013 infant mortality rates
than the rate in the United States (CIA, 2014). Still, the U.S. rate fell 12
percent between 2005 and 2011, partly because of a decline in premature
births (MacDorman et al., 2013). In general, the number of pediatric deaths
due to trauma and other acute causes has declined, while the number at-
tributable to complex chronic conditions has risen. One-third of pediatric
deaths are among children with one or more complex chronic conditions.
Overall, children and adolescents “live with and die from a wide array of
often-rare diseases that require specialized care”; as noted earlier, many of
these conditions are different from those that affect adults (see Appendix F).
The 10 leading causes of deaths in the United States are shown in
Table 1-3. Heart disease and cancer together account for approximately
half of the total. The leading causes vary among different population groups
defined by age, race/ethnicity, and other factors.
At least seven of the causes of death listed in Table 1-3 are chronic
conditions, the exceptions being unintentional injuries, influenza and pneu-
monia, and suicide. Nonetheless, taking into account that influenza and
TABLE 1-1 Improvements in U.S. Life Expectancy, 1995-2011

Overall
Indicator 1995 2011 Improvement (%)
Average life expectancy at birth 75.8 years 78.7 years 3.8
SOURCES: For 1995: IOM, 1997, citing Anderson et al., 1997; for 2011: Hoyert and Xu,
2012.

INTRODUCTION 35
TABLE 1-2 Deaths Among U.S. Infants and Children, Rates and Causes,
2009-2010
Indicator Infants Ages 1-4 Ages 5-9 Ages 10-14
Number of deaths 24,586 4,316 2,330 2,949
Crude death rate 614.7 per 26.5 per 11.5 per 14.3 per
100,000 live 100,000 100,000 100,000
births
Leading causes of death Prematurity Accidents Accidents Accidents
and low (unintentional (unintentional (unintentional
birthweight, injuries), injuries), injuries),
congenital congenital cancer, cancer, suicide,
problems, problems, congenital homicide
pregnancy homicide problems,
complications, homicide
sudden infant
death syndrome
SOURCE: Heron, 2013.
pneumonia are most deadly among people whose health is already compro-
mised in some way, as well as the contribution of alcohol use, depression,
and other such factors to suicide and unintentional injuries (e.g., fires, falls,
drownings, vehicle and pedestrian accidents), all 10 causes are linked in
some way to chronic health problems.
The Changing U.S. Population

Dying in America today reflects the overall aging and growing diversity
of the U.S. population, as well as the particular vulnerability of certain
individuals.
Aging
An increase in the number and proportion of Americans aged 65 and
older has been a dominant demographic trend since long before Medicare
came into being. Three times the percentage of Americans pass their 65th
birthday today as was the case in 1900, and the proportion of the popula-
tion reaching age 85 is 48 times larger than a century ago (AoA, 2012).
Indeed, the percentage of Americans over age 65 is on an upward trajectory
from 9 percent in 1960 to a projected 20 percent in 2050 (see Table 1-4).
Greater longevity comes at a cost. With increases in life expectancy, the

36 DYING IN AMERICA
TABLE 1-3 Leading Causes of Death, United States, 2010

Cause Percentage of Deaths
Heart disease 24.2
Cancer (malignant neoplasms) 23.3
Chronic lower respiratory diseases 5.6
Cerebrovascular diseases (e.g., stroke) 5.2
Unintentional injuries 4.9
Alzheimer’s disease 3.4
Diabetes mellitus 2.8
Influenza and pneumonia 2.0
Kidney diseases (e.g., nephritis) 2.0
Suicide 1.6
SOURCE: Heron, 2013.
burden of serious illnesses among the nation’s Medicare-eligible (65 and

older) and old-old (85 and older) populations has risen markedly. Two-
thirds of people aged 65 and older suffer from serious, multiple chronic
conditions (CDC, 2013). By contrast, 31 percent of those aged 45 to 64
and only 6 percent of those aged 18 to 44 were treated for two or more
chronic conditions in 2009 (Machlin and Soni, 2013).
Table 1-5 shows the impact of having multiple chronic conditions on
health care costs. In general, Medicare spending rises dramatically with
increases in the number of chronic conditions. Beneficiaries with five or
more such conditions accounted for nearly two-thirds of Medicare dollars
spent in 2007 (Anderson, 2010).
In the future, the aging U.S. population is likely to experience large
increases in certain diseases that are costly to treat. Without more effective
methods for prevention and early treatment, conditions such as cardio-
TABLE 1-4 Growth in the U.S. Elderly Population, 1960-2050

(projection)
Age Group 1960 2000 2010 2050 (est.)
65+: number 16.6 million 35 million 40.3 million 88.5 million
(% of total population) (9.2) (12.4) (13.0) (19.8)
85+: number 929,000 4.2 million 5.5 million 19 million
(% of total population) (0.5) (1.5) (1.7) (4.2)
SOURCES: For 1960 and 2000: He et al., 2005; for 2010: Bureau of the Census, 2010; for
2050: Bureau of the Census, 2008.

INTRODUCTION 37
TABLE 1-5 Average Medicare Expenditures per Fee-for-Service

Beneficiary, by Number of Chronic Conditions, 2010
Number of Chronic Conditions Average Expenditure ($)
0-1 2,025
2-3 5,698
4-5 12,174
6 or more 32,658
NOTE: The 15 chronic conditions included in this analysis are high blood pressure, high
cholesterol, ischemic heart disease, arthritis, diabetes, heart failure, chronic kidney disease,
depression, chronic obstructive pulmonary disease, Alzheimer’s disease, atrial fibrillation,
cancer, osteoporosis, asthma, and stroke.
SOURCE: CMS, 2012.
vascular disease (Pandya et al., 2013) and cancer are likely to consume an
increasingly large share of health care resources because even with stable or
slightly falling rates of illness, the growing number of people in the higher-
risk age groups means the number of cases will grow. Thus, the number
of new cases of cancer is expected to increase by 45 percent between 2010
and 2030 (IOM, 2013).
The number of Americans with Alzheimer’s disease and related demen-
tias also is rising rapidly, expected to grow from 5.5 million in 2010 to 8.7
million in 2030 (HHS, 2013), and the prevalence of Parkinson’s disease
is expected to double in the next 30 years. In 2010, the annual costs of
caring for Americans with dementia, including both medical and nursing
home care and unpaid care (mostly by family members), were estimated at
$157-$215 billion, depending on how informal care was valued (Hurd et
al., 2013); for Parkinson’s disease, the estimated direct and indirect costs
totaled almost $21 billion (Kowal et al., 2013). These high costs can ac-
cumulate over a number of years of declining health, despite the tendency
for the intensity of medical care to decrease among the oldest members of
the population in the last year of life (see Appendix E).
Functional limitations and disabilities likewise increase with age and as
death approaches (Chaudhry et al., 2013; Smith et al., 2013). One result
is a growing need for nursing home and other long-term care placements.
The number of Americans needing long-term care is expected to more than
double, reaching 27 million, by 2050 (Senate Commission on Long-Term
Care, 2013).
Living for extended periods with serious disease and disability need not
be inevitable features of aging, however. Data from the National Long-Term
Care Survey show that disability rates can be decreased (NIA, 2010), while

38 DYING IN AMERICA
data from the Survey of Income and Program Participation show these rates
stabilizing since 2000 (Kaye, 2013). In addition, evidence from the Health
and Retirement Study indicate that the probability of being cognitively
impaired declined from the mid-1990s up until at least 2004, and there is
reason for cautious optimism that better control of stroke and heart dis-
ease will contribute to reductions in new cases of dementia as well (Rocca
et al., 2011). Factors behind these improvements include not only better
clinical treatment but also behavioral changes, assistive technologies, and
improvements in socioeconomic status that suggest a need for a broad array
of interventions—beyond health care—to reduce the burden of disability on
older Americans. These improvements are masked, however, by the rapidly
increasing number of older adults, which will result in increased need for
services despite stable or lower disability rates.
Growing Diversity
The ethnic and cultural composition of the U.S. population is chang-
ing. Much has been said about the rapidity with which some U.S. cities and
states are becoming “majority minority” places. Many clinicians today and
certainly those of the future will care for people of differing ethnic, cultural,
religious, and language backgrounds and literacy/health literacy levels; dif-
fering traditions and rituals around dying; differing levels of comfort with
making critical decisions; differing expectations of the health care system;
and differing family compositions, roles, and responsibilities. The strengths,
weaknesses, and resilience of families are especially important factors, given
the long-term trend to move ever more complex care to the home. Such fac-
tors can increase particular risks—in the present context, the risk of poor-
quality, high-cost care in the final phase of life—for population groups, or
even particular individuals.
Vulnerable Individuals
Many people are among those at heightened risk of poor-quality, high-
cost end-of-life care. Beyond the demographic factors discussed above, the
following individuals are particularly vulnerable:
• infants and children with congenital disorders, genetic diseases, or

cancer;
• people of any age with complex chronic conditions;
• the elderly who have multiple chronic conditions, functional limita-
tions, and frailty;
• people who have mental disorders or cognitive impairments, such
as stroke, Alzheimer’s disease, or other dementias; and

INTRODUCTION 39
• people with inadequate access to health services because of geogra-

phy, immigration status, low income and lack of health insurance,
incarceration, and structural features of the health care system.
RESEARCH NEEDS
Areas in which additional research is needed are cited in Chapters 2, 3,
and 5. In 2013, the National Institute of Nursing Research—the lead insti-
tute within NIH for research on end-of-life care—published a summary of
research trends and funding in end-of-life and palliative care for the years
1997-2010 (NINR, 2013). This summary was based on published research
supported by both public and private entities. While the report notes that
the scientific literature in this area has tripled since 1997 and totaled more
than 3,000 publications as of 2010, it cites gaps as well.
In 1997, most research in end-of-life and palliative care was privately
funded. While the amount of federal funding for such research has in-
creased dramatically since 1997—from $4.2 million to $61.55 million in
2010—it still represents a very small proportion of the nation’s annual
investment in biomedical research. Researchers who want to study end-of-
life and palliative care topics face an ongoing difficulty in obtaining NIH
funding. To evaluate the significance of these proposals adequately, the
various NIH institutes would need approval bodies (study sections) devoted
to end-of-life questions or larger numbers of people with end-of-life and
palliative care expertise serving on existing study sections.
SUMMARY
Despite considerable progress, significant problems remain in providing
end-of-life care for Americans that is high quality and compassionate and
preserves their choice while being affordable and sustainable. Many of these
same challenges apply generally to individuals with chronic and complex
medical and mental disorders and reflect the current fragmentation and
limitations of the U.S. health care system—a system currently undergoing
profound change.
Significant opportunities exist to improve and align financial and pro-
grammatic incentives across health and social services programs, develop
incentives to implement program models that have demonstrated how to
achieve better care at lower cost, better target complex care interventions
and tailor resources to individual needs, and use social services to ease the
burden on families and enhance quality of life. In some cases, additional
research is needed, especially toward improving clinicians’ ability to iden-
tify individuals at risk of a “bad death.” In addition, greater oversight is

40 DYING IN AMERICA
needed to ensure quality care, control costs, increase transparency, and

ensure accountability.
A national strategy for accomplishing the needed changes in the current
health care delivery system would necessarily be broad-based, taking into
account features of the health care system as it is currently evolving, the
way care is provided and the improvements needed, the way health care
providers are trained and what they are taught to do, and the awareness
and knowledge that would cause the public at large to support and advo-
cate for these changes. Fundamental to this strategy is the need for—and
difficult work of—breaking down a range of silos, for example, between
“curative” and palliative care, between professional groups so as to fos-
ter interdisciplinary practice, and between traditional medical and social
services. Development of a specific strategy, therefore, would require the
broad engagement of multiple actors in the health care field and social and
supporting services sector, as well as the organizations and institutions on
which Americans rely for practical assistance, spiritual support, informa-
tion, and advice as caregivers and as people with life-limiting illnesses.
Designing such a complex, multipart strategy involving so many essential
participants is beyond the scope of this study, particularly given that the
U.S. health system is undergoing so many changes. However, the insights
offered in this report regarding problems, challenges, and strengths of
the system may be a foundation on which many other efforts can build.
These challenges and opportunities are discussed in detail in the following
chapters.
ORGANIZATION OF THE REPORT

This report provides a detailed description of important aspects of the
current U.S. health care system as they affect Americans nearing the end
of life. As noted, the system is changing substantially at present, meaning
that the following chapters, which rely heavily on published evidence and
analysis, are to some extent a snapshot taken yesterday. An accurate picture
of U.S. health care today has not yet developed, and what the system will
be tomorrow is not clearly in focus. Nevertheless, much has been learned
to date that should enable the implementation of high-quality, cost-effective
care that patients and families find compassionate and supportive of their
values, goals, and preferences at the end of life.
Chapter 2 describes end-of-life services as they are currently delivered,
focusing especially on the role of palliative care. The importance of com-
prehensive advance care planning and improvements in traditional advance
directives is discussed in Chapter 3. Chapter 4 examines the workforce and
educational needs of health professionals who care for people nearing the

INTRODUCTION 41
end of life. Chapter 5 reviews the policies and payment systems, particu-
larly those of Medicare and Medicaid, that shape current patterns of care.
Finally, public attitudes and beliefs about topics in end-of-life care and ele-
ments of potential public education programs are reviewed in Chapter 6.
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INTRODUCTION 43
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of the American Medical Association 309(5):470-477.


The Delivery of Person-Centered,

Family-Oriented End-of-Life Care
For most people, death does not come suddenly. Instead, dying is an
inevitable result of one or more diseases that must be managed carefully
and compassionately over weeks, months, or even years, through many ups
and downs. This chapter examines the ways in which health care providers
manage that process. Evidence shows that—regardless of whether curative
treatments are also undertaken—a palliative approach often offers the best
chance of maintaining the highest possible quality of life for the longest
possible time for those living with advanced serious illness.
Death is not a strictly medical event. Ideally, health care harmonizes
with social, psychological, and spiritual supports. Health care makes im-
portant contributions as patients near the end of life: it relieves pain,
discomfort, and other symptoms and effects of disease; it can facilitate
achieving maximum possible functioning; it can help alleviate depression
and anxiety; it can ease the burden on loved ones and facilitate construc-
tive family dynamics; and sometimes it can extend life for a period of time.
It can achieve all these things by combining science with compassion; by
adjusting treatments to the unique needs of the individual patient; and by
taking into account the patient’s and family’s spiritual and cultural context,
interests, roles, and strengths. The committee believes, therefore, that care
of people nearing the end of life should be preeminently patient-centered
and family-oriented.
The importance of family is emphasized throughout this chapter. As
articulated in the guiding principles presented in Chapter 1 (see Box 1-3),
the committee construes the term “family” broadly to encompass spouses,
blood relatives, in-laws, step-relatives, fiancés, significant others, friends,
45

46 DYING IN AMERICA
caring neighbors, colleagues, fellow parishioners or congregants, and other

people with a personal attachment to the person with advanced serious
illness—in other words, the people “for whom it matters.”
Also emphasized throughout this chapter—as throughout this report—
is the importance of providing the services needed by people with advanced
serious illnesses in a coordinated way. This coordination can be accom-
plished through many different types of structures and arrangements, de-
pending on available resources, payment schemes, and cultural and social
preferences. No one service delivery pattern fits all.
This chapter begins by reviewing the current situation with respect to
end of life: the trajectories and symptoms of death; and salient features
of current end-of life care delivery, including the providers of care, the
importance of primary care, the problem of burdensome transitions across
care settings, and the challenge of unwanted and uncoordinated care. Next
is an examination of palliative care, including hospice, as an established
approach to providing the best possible quality of life for people of all
ages who have an advanced serious illness or are likely approaching death.
The chapter then looks at efforts to measure and report on the quality of
care near the end of life, and suggests a set of core quality components.
This is followed by a discussion of the problem of prognosis alluded to in
Chapter 1. The chapter then focuses on family caregivers, who constitute a
generally invisible, undertrained, financially and emotionally stressed, and
growing workforce. After outlining research needs related to the delivery
of patient-centered, family-oriented end-of-life care, the chapter ends with
the committee’s findings, conclusions, and recommendation for broad-scale
improvement in this area.
REVIEW OF THE CURRENT SITUATION
Trajectories and Symptoms Near the End of Life

The Institute of Medicine (IOM) report Approaching Death: Improving
Care at the End of Life (IOM, 1997) depicts three prototypical trajectories
near the end of life:
• a sudden death from an unexpected cause (such as a motor vehicle

accident, myocardial infarction, or stroke);
• a steady decline from a progressive disease with a terminal phase
(such as cancer); and
• an advanced illness marked by a slow decline with periodic crises
and eventual sudden death (such as chronic lung disease or conges-
tive heart failure).

DELIVERY OF END-OF-LIFE CARE 47
For children (as described in Appendix F), the three most common trajecto-
ries near the end of life are sudden death (from trauma), fluctuating decline
(such as worsening heart failure), and constant medical fragility (as with
some neurologic impairments).
To a patient or family, these categories may appear to overlap. A person
dying suddenly from an unexpected cause may have had serious underlying
health problems; someone experiencing a steady decline may also enjoy
many good days; and a person with a generally slow decline may suffer a
sudden steep deterioration in health status.
Another way to view trajectories near the end of life is to focus on func-
tional status. In a prospective cohort study that included 491 participants
who initially were not disabled, were at least 70 years old at the start of
the study, and died during the 13-year course of the study, disabilities (or
“restricting symptoms”) remained relatively constant from 12 months be-
fore death until 5 months before death, when they began to increase rapidly
(Chaudhry et al., 2013). Twenty percent of the study population demon-
strated disability 1 year before death, 27 percent at 5 months before death,
and nearly 60 percent in the month before death. Similarly, in a study of
8,232 decedents enrolled in the Health and Retirement Study between 1995
and 2010, the prevalence of disability increased from 28 percent 2 years
before death to 56 percent in the month before death (Smith et al., 2013b).
As is emphasized later in this chapter in the section on prognosis, it
is difficult to predict an individual patient’s disease or disability trajectory.
While the course of a disease varies greatly from one individual to another,
and people often have multiple diseases and debilitating conditions near
the end of life, it may be possible to identify likely patient needs based on
patient and disease characteristics, informing service delivery needs. At
the individual level, the committee believes health care providers are best
advised to develop, frequently review and revise, and implement care plans
tailored to individual circumstances.
Individual circumstances that influence personalized care plans include
the disease process; the patient’s physical, social, spiritual, and cultural
environments and supports (e.g., difficulties in obtaining culturally and
linguistically appropriate care); and the patient’s experience with both
physical and psychological symptoms. Some of the major physical and
psychological symptoms people face toward the end of life are identified
in Approaching Death in a list that remains relevant today (IOM, 1997,
pp. 76-78):
• pain;
• diminished appetite and wasting (anorexia-cachexia syndrome);
• weakness and fatigue (asthenia);

48 DYING IN AMERICA
• shortness of breath (dyspnea) and cough;

• nausea and vomiting;
• difficulty swallowing (dysphagia);
• bowel problems (constipation, diarrhea);
• mouth problems (dry mouth, sores, dental problems, infections);
• skin problems (itching, dryness, chapping, acne, sweating, sensitiv-
ity to touch, pressure sores, dark spots);
• tissue swelling (lymphedema);
• accumulation of liquid in the abdomen (ascites);
• confusion;
• dementia;
• anxiety; and
• depression.
Other problems experienced by many patients nearing the end of life

are not necessarily disease related but common to the experience of aging.
Examples include incontinence, falls and mobility problems, delirium, de-
pression, and abuse and neglect.
Children nearing the end of life face symptoms similar to those of
adults. Studies of children with cancer have found the patient symptoms
most frequently reported by parents to be pain, fatigue, dyspnea, change in
behavior, and loss of appetite (Pritchard et al., 2010; Wolfe et al., 2000).
The varied trajectories and symptoms experienced by people with
advanced serious illnesses pose special challenges for health care provid-
ers, especially if the patient has multiple coexisting conditions. A drug or
treatment prescribed for one condition may be contraindicated for another;
unexpected interactions among drugs may occur. Moreover, the availability
of personal, physical, social, and other resources influences how care needs
related to decreases in functional status are addressed. Box 2-1 highlights
another important challenge noted also in Chapter 1: many elderly people
with advanced serious illnesses have dementia or cognitive impairments.
Providers of Care Near the End of Life

The health care institutions most involved in care near the end of life
are hospitals, nursing homes, long-term acute care facilities, home health
agencies, and hospices, as well as outpatient clinical settings. The health
professions most involved are physicians, nurses, and social workers. Be-
sides specialists trained and certified in hospice and palliative medicine,
the involved physicians include primary care clinicians, hospitalists, and
specialists in treating advanced serious diseases, such as cancer and heart
disease. Nursing personnel involved in end-of-life care include advanced

BOX 2-1
Dementia as an Example of the Challenges in End-of-Life Care
Many elderly people in their final months or years have combinations of

chronic diseases that include dementia. People with dementia cannot consis-
tently communicate effectively with health care workers or participate actively
and routinely in their care. A study of 163 elderly, non-critically ill patients in the
emergency department of an academic medical center found that 37 percent
had cognitive dysfunction (Carpenter et al., 2011). Such impairments hamper
clinicians’ efforts to obtain accurate medical histories, make timely and accurate
medical diagnoses, and initiate proper treatment (Han et al., 2011). Such impair-
ments can also prevent patients from adhering to discharge instructions designed
to prevent future problems and emergencies (Hustey et al., 2003).
Dementia may add another layer of complexity to disparities in medical
decision making among racial and ethnic minority groups. A systematic review of
20 articles on end-of-life care among African Americans, Hispanics, Asian Ameri-
cans, and Caucasians with dementia found treatment differences at the end of
life that may be due to “the double disadvantage of dementia and ethnic minority
status” (Connolly et al., 2012, p. 359). The study found that Asian Americans and
African Americans with dementia were more likely than others to initiate artificial
nutrition, and African Americans were more likely to receive blood transfusions,
mechanical ventilation, and intensive care unit care, and less likely to have treat-
ment withheld or to complete advance directives.
practice nurses, other registered nurses, practical nurses, and nursing as-
sistants, with specialty certifications available at all these levels. Social
workers, chaplains, pharmacists, rehabilitation therapists, direct care work-
ers (such as home health aides), family caregivers, and hospice volunteers
also participate in end-of-life care in large numbers. Family caregivers
are discussed later in this chapter, while other personnel are discussed in
Chapter 4.
The Importance of Primary Care

Primary care1
plays a crucial role for many people with advanced seri-
ous illnesses because primary care clinicians often are best positioned to
coordinate the patient’s health services across multiple specialties, ensure
continuity of care across the patient’s life span, and understand the capabili-
1 An IOM report defines primary care as “the provision of integrated, accessible health care
services by clinicians who are accountable for addressing a large majority of personal health
care needs, developing a sustained partnership with patients, and practicing in the context of
family and community” (IOM, 1996, p. 31).

50 DYING IN AMERICA
As my 88-year-old father-in-law was in decline with eight different

chronic conditions, he had more specialists than we could keep
track of, and nobody was steering the ship. Most of all, his pain
was poorly managed, but finding an outpatient palliative care phy-
sician was impossible, even in a city like Los Angeles. He resisted
hospice mainly because he thought that meant he was giving up, so
he continued to suffer and experience recurring runs to the emer-
gency room. When he finally agreed to home hospice, his care and
condition improved dramatically, and during the final month he
lived under hospice he was comfortable, he had heartfelt conversa-
tions with all 11 of his children, and he died in peace and dignity in
his home. It was a good death, but the period of serious, progres-
sive illness before hospice was a nightmare, because hospice-type
care is kept out of reach until the last moments of life.*
*Quotation from a response submitted through the online public testimony ques-
tionnaire for this study. See Appendix C.
ties of family members. Primary care clinicians include family physicians,

general internists, general pediatricians, and geriatricians; primary care
nurse practitioners; and some physician assistants. These clinicians often
treat patients who are nearing the end of life and require identification and
treatment of multiple physical symptoms, as well as psychosocial support.
In addition to treatment of one or more advanced serious illnesses and their
comorbidities, their patients variously may need assistance in advance care
planning and health care decision making, counseling, referrals to hospice
and specialty palliative care, referrals to other relevant specialists and to
social service and home health agencies, and coordination of care.
Care coordination, including communication among all providers and
between providers and the patient and family, is especially crucial because
care near the end of life can involve many health professionals, multiple
chronic conditions, and rapidly emerging complex problems with medical
and social dimensions. Primary care often is expected to carry out this care
coordination function. However, the high use of specialty care by elderly
people with multiple chronic conditions makes coordination difficult. This
difficulty is illustrated by a cross-sectional study in Washington State of
2,000 Group Health plan members who had chronic conditions and were
eligible to enroll in a Medicare Advantage Special Needs Plan. In that study,
continuity of primary care was associated with more coordinated care for

patients who were low users of specialty care, but not for patients who were
high specialty care users2 (Liss et al., 2011).
A literature review of coordination in end-of-life cancer care between
primary care physicians and oncologists found “preliminary evidence that
the continued involvement of primary care physicians in cancer care is val-
ued by patients, may influence care experiences and outcomes, and serves
identifiable functions,” such as “meeting patients’ needs for communication
and emotional support” (Han and Rayson, 2010, p. 33). The authors of
this literature review further noted, “Data are particularly lacking on the
nature and outcomes of care coordination occurring specifically between
primary care physicians and oncologists” (Han and Rayson, 2010, p. 34).
For example, one study using the Surveillance, Epidemiology, and End
Results (SEER)-Medicare database3 for 1992-2002 found that advanced
lung cancer patients who were seen by their usual primary care provider
during their final hospitalization had 25 percent reduced odds of admission
to critical care units (Sharma et al., 2009).
Current trends support the development of “medical homes,” which are
distinguished by seven essential features: a personal physician, physician-
directed medical practice, a whole-person orientation, coordination (or at
least integration) of care, quality and safety as hallmarks, enhanced access
to care, and appropriate payment mechanisms (American Academy of
Family Physicians et al., 2007). One of the “joint principles” of medical
homes adopted by the American Academy of Family Physicians, American
Academy of Pediatrics, American College of Physicians, and American Os-
teopathic Association describes a whole-person orientation:
The personal physician is responsible for providing for all the patient’s
health care needs or taking responsibility for appropriately arranging care
with other qualified professionals. This includes care for all stages of life:
acute care, chronic care, preventive services, and end of life care. (Ameri-
can Academy of Family Physicians et al., 2007, p. 1, emphasis added)
Attention to the spectrum of needs of persons near the end of life and
their families thus is highly consistent with the goals of the medical home
approach.
Medical homes are commonly used in the care of children. Pediatricians
in medical homes provide end-of-life care “by proactively coordinating care;
facilitating consistent communication for better decision-making; providing
2 Inthis study, coordination was defined based partly on the coordination measure from the
short form of the Ambulatory Care Experiences Survey, continuity of care was based on a
formula that involved the number of primary care clinicians seen by a patient during 1 year
and the number of visits to each primary care clinician, and high use of specialty care was
defined as 10 or more specialty care visits in 1 year.
3 The SEER-Medicare database comprises Medicare beneficiaries diagnosed with cancer.

52 DYING IN AMERICA
anticipatory guidance; and helping to manage symptoms and social distress;

and helping with medical decision-making” (Tripathi et al., 2012, p. 113).
These activities are seen as consistent with palliative care, as described later
in this chapter, and should be offered from the time of diagnosis onward,
according to the American Academy of Pediatrics (AAP, 2013).
Strongly related to the primary care needs of many older people with
advanced serious illnesses are their needs for geriatric care. Geriatricians
routinely provide care for vulnerable older adults with complex conditions
(Warshaw et al., 2008). Providing appropriate palliative care is a core value
of this subspecialty of both internal medicine and family medicine (Besdine
et al., 2005). Many of the needs of older people can also be met by geron-
tological advanced practice nurses (Hendrix and Wojciechowski, 2005).
Addressing the palliative needs of people near the end of life and their
families is consistent with the expertise, approach, and values of primary
care across the life span.
The Problem of Burdensome Transitions

Patients often experience multiple transitions near the end of life, and
they suffer the consequences of the resultant discontinuities in care. Medi-
cation errors, disruptions in care planning, and failures to coordinate care
all are implicated in poorly managed transitions between care settings, in-
cluding between hospitals and nursing homes or private homes. Following
discharge from hospital to home, the lack of a single point of contact and
of nurse involvement in follow-up care can be unsettling to patients and
families (Swan, 2012). Transitions characterized by these deficits or those
that are simply difficult for sick, confused patients and their families to
manage are considered “burdensome.” Transitions between care settings
can be confusing and overwhelming to patients, especially seriously ill
patients, and their families and can result in preventable readmissions or
emergency department visits. Often, appropriate follow-up referrals are not
made, follow-up with relevant health care professionals is not sufficiently
timely, psychological and social needs are not addressed, and potentially
useful personnel such as social workers, pharmacists, health educators,
and rehabilitation therapists are not engaged (Abrashkin et al., 2012;
Feigenbaum et al., 2012).
Preventable hospital readmissions are frequently a consequence of
poorly managed transitions. As many as one-fifth of Medicare fee-for-
service beneficiaries discharged from the hospital to the community in
2003-2004 were readmitted within 30 days, and one-half of them did not
see their physician in the interim (Jencks et al., 2009). Between 2000 and
2009, the rate of health care transitions—both in the last 90 days and in the
last 3 days of life—among fee-for-service Medicare beneficiaries increased

(Teno et al., 2013). Among transitions in the last 3 days of life, more than
20 percent were to an acute care hospital.
In what may be the start of a favorable trend, the Medicare readmis-
sion rate did fall slightly in 2012, to 18.4 percent (Gerhardt et al., 2013).
This decline was perhaps related to recent initiatives aimed at reducing re-
admissions. For example, Aetna Medicare Advantage members in the mid-
Atlantic region who received care under what was called the Transitional
Care Model had a 29 percent 3-month readmission rate, compared with a
39 percent rate among matched nonparticipants; they also experienced far
fewer hospital days on average during the 3 months postdischarge (Naylor
et al., 2013). The Transitional Care Model entailed assignment of a tran-
sitional care nurse at the time of admission to assess needs and develop
and implement the discharge plan. Similarly, an intervention designed to
encourage patients and family caregivers to play a more active role in care
transitions led to lower readmission rates at both 30 and 90 days in a
large integrated care delivery system in Colorado (Coleman et al., 2006).
This intervention included guidance from a “transitions coach,” as well
as encouragement and tools to improve communication across settings.
Another intervention, in an academic medical center, led to lower hospital
utilization within 30 days of discharge by using a “nurse discharge advo-
cate” to conduct patient education, arrange follow-up appointments, and
assist with reconciliation of medications (Jack et al., 2009). More recently,
the Centers for Medicare & Medicaid Services’ (CMS’s) Quality Improve-
ment Organization Program, Community-based Care Transitions Program,
and Hospital Readmissions Reductions Program introduced a penalty that
reduces payments to hospitals with a disproportionate readmission rate
for particular conditions beginning in 2012. This initiative, which incorpo-
rates aspects of several of these other programs, has demonstrated success
in reducing hospital readmission rates (Brock et al., 2013; CMS, 2013a,
2014a,b; James, 2013).
To reduce readmission rates and improve primary care, the U.S. De-
partment of Veterans Affairs (VA) has used Patient Aligned Care Teams
(PACTs) with nurse case managers. In Madison, Wisconsin, a VA program
called Coordinated-Transitional Care (C-TraC) used experienced nurses as
case managers to consult with patients by telephone, rather than in home
visits (Kind et al., 2012). These nurses followed protocols intended to edu-
cate and empower the patient and caregiver in medication management,
ensure medical follow-up, educate the patient and caregiver to respond to
“red flags” indicating a worsening medical condition, and ensure that the
patient and caregiver knew whom to contact. Readmission rates were 23
percent among C-TraC patients in 2010-2012, compared with 34 percent
at baseline. The 23 percent rate is still higher than the 18.4 percent national

54 DYING IN AMERICA
average for 2012 noted above, but this difference may reflect differences in
patient characteristics.
According to a meta-review of 57 meta-analyses of randomized clinical
trials, community-based disease management programs4 have been shown
to reduce hospital readmission rates for patients with heart failure, coro-
nary heart disease, and asthma (Benbassat and Taragin, 2013). On the other
hand, disease management programs for several other types of patients and
inpatient-based programs generally have been less successful. A systematic
review of 21 randomized clinical trials involving transitions of patients
from the hospital to another setting found that 9 of the interventions re-
sulted in a statistically significant positive effect on readmission (Naylor
et al., 2011); all 9 interventions involved nurses, and 6 of these involved
home visits.
Transfers to and from nursing homes are also important to end-of-life
care in at least two ways. First, as noted in Chapter 1, the percentage of
deaths occurring in nursing homes has been greater recently than it was in
the years prior to the publication of Approaching Death (IOM, 1997). As
end-of-life care moves away from hospitals and toward nursing homes and
individual homes, the quality of care near the end of life in nonhospital set-
tings becomes more important (Flory et al., 2004). Second, many nursing
home residents with dementia, in particular, face burdensome transitions
and may experience interventions that cause discomfort and produce little
if any gain:
The late stages of dementia are characterized by major challenges to qual-
ity of life, including inability to communicate, initiate movement, or walk;
difficulty eating and swallowing; agitation; incontinence; and a high risk of
infection and pressure ulcers. The sources of suffering for individuals with
dementia go beyond fear, depression, and confusion and include significant
physical symptoms, including pain, coughing, choking, dyspnea, agitation,
and weakness. . . . Nearly all family members of nursing home residents
with advanced dementia report that comfort is the primary goal for their
care. Nonetheless, a minority of Medicare decedents with dementia are
referred to hospice before death, and repeated burdensome transitions be-
tween hospitals and nursing homes and feeding tube placement commonly
occur, despite lack of evidence of quality of life or survival benefit. (Unroe
and Meier, 2013, p. 1212)
In one sense, nursing homes face a dilemma in providing care near the
end of life. Although nursing homes typically are a frail elderly person’s
final residence, federal and state agencies and national accreditation enti-
ties hold them to standards that can be more suitable to life-prolonging
4 Disease management programs coordinate services, over time and across settings, for pa-
tients with multiple serious conditions (Ellrodt et al., 1997).

care than to addressing quality of life and comfort near the end of life. As
a result, “evidence indicates that nursing homes undertreat pain, especially
in cognitively impaired and minority residents” (IOM, 2011, p. 141).
Unwanted Care and Lack of Coordination and Continuity: An Illustration

Box 2-2 presents a family narrative illustrating several dimensions of
care near the end of life that is neither needed nor desired, neither coordi-
nated nor continuous. Those dimensions include a failure to implement ad-
vance directives, an excessive number of burdensome transitions, repeated
miscommunications with the family, inadequate pain management and ap-
parent overuse of sedation, insensitive communication with the patient, and
an inordinate delay in referral to hospice. Chapter 3 examines in detail the
importance of communication about patients’ values, goals, and informed
preferences. Such communication can help patients avoid unwanted care
and ensure that they receive care that is consistent with their personal goals
and values.
How frequently does this scenario occur? The incident recounted in
Box 2-2 took place despite the active involvement of at least one clearly
articulate family advocate; many people near the end of life lack this ad-
vantage. Other accounts of unwanted treatment that fails to accord with
patient preferences are reported in generalist publications (Butler, 2013;
Krieger, 2012; Rauch, 2013), in comments submitted to the committee
online by members of the public, and in subsequent chapters of this report.
The IOM Committee on Improving the Quality of Cancer Care recently
underscored the importance of patient preferences, saying, “In the setting
of advanced cancer, the cancer care team should provide patients with
end-of-life care consistent with their needs, values, and preferences” (IOM,
2013, p. 138). Current conditions appear to fall far short of this goal. The
same IOM report notes that according to recent studies, clinicians ask for
patient preferences in medical decisions only about half the time. (See also
Chapter 3.)
THE PALLIATIVE APPROACH

Palliative care can be considered an umbrella term that encompasses a
spectrum of approaches to delivering care for people with serious advanced
illness. Various organizations have put forward conceptual or functional
definitions of palliative care, suggesting that it
• “seeks to prevent, relieve, reduce, or soothe the symptoms of dis-

ease or disorder without effecting a cure” (IOM, 1997, p. 31).

56 DYING IN AMERICA
BOX 2-2
The Impact of Unwanted, Uncoordinated Treatment:
A Family Narrative
The subject of this narrative is a New England man who died at age 98,
several years after telling his family and signing directives to exclude “heroic”
measures at the end of his life. His daughter recounts his experience:
In 2010, he had been suffering from a form of senile dementia progres-

sively for at least 10 years, though his physical health was excellent. The
death of his wife, however, in May of that year, caused him greater confusion
and anxiety than he had ever experienced. . . .
Early in the morning on December 7, 2010, the staff at the assisted liv-
ing facility, where he lived in Maine, found him on the floor. They phoned an
ambulance and he was taken to a nearby hospital, where a left hip fracture
was diagnosed. . . .
The surgery was “successful” and my father “recovered” post-operatively
very well. However, his agitation—presumably prompted by pain, unfamiliar
surroundings, lack of comprehension of the circumstances—increased daily.
...
In the 4 weeks prior to his death, my father lived under the care of five
different institutions in two states. Only the last place, the hospice, appeared
willing or able to provide care and comfort to a man who was obviously at
the end of his life.
After he had been in the hospital in Maine for 12 days, a social worker
phoned one morning to say an ambulance was on its way to take him to a
hospital in Haverhill, Massachusetts, where his medications would be “ad-
justed.” . . . The transfer was already in progress; we, the family, were merely
being notified.
When we arrived at the hospital in Maine, distraught at the short notice,
we asked to see the doctor who was discharging my father. A psychiatrist, he
explained the reasons for my father’s abrupt discharge. According to medical
practice, it was well known (from patients who could give a reliable history)
that post-op pain is gone after 3 days. Given the state my father was in—he
was groaning in evident agony—I began to suspect that the situation was
purposely misunderstood by the professionals in charge of his care.
It was clear that there was no good future for my father: I knew his com-
prehension could not be improved medically; only his physical activity and
his mental agitation could be subdued by drugs. Distressed myself, I pleaded
with this psychiatrist that all my father needed was “care and comfort,” a
phrase my own doctor had assured me was the medically acceptable option.
At this, the psychiatrist looked me straight in the eye and said, “I’m sorry, but
because of my own personal and religious beliefs, I am not able to discuss
that with you.”

When we arrived at the Haverhill facility—which we only then discovered

was a mental hospital—my father was already admitted to a ward of mostly
elderly patients who, we had been told, were being treated for medical as
well as psychiatric problems. However, it was there that an aide, trying to
help my father to the toilet, recoiled in horror when he saw the staples still
holding the incision site together, asking, “How do we get him to the toilet
with a broken hip?”
A staff social worker . . . seemed surprised that this new patient had come
from Maine, but then remembered that their marketing person had just visited
the Maine hospital. My father’s transfer was apparently the first success of
their new marketing campaign.
She told us that on Monday morning we would be called for a family
meeting to consider my father’s care. . . . His distress and confusion steadily
increased. By Sunday, he was hostile, even to us (we had never seen that
before) and obviously paranoid. . . .
Monday morning came, and no one contacted us. I phoned both the
social worker and the nurses’ station on the floor, but no one was available
to talk to me about my father. Fifteen minutes after my last phone call, my
sister received a call from the Haverhill hospital to inform her that they were
transferring my father to a nearby regional hospital emergency room. Why?
Because he was dehydrated and had an elevated white cell count.
When we got to the emergency department and saw my father, he was
heavily sedated. . . . We were later told that my father was not dehydrated
and that actually his white cell count was only slightly elevated. The Haverhill
mental hospital had kept him the three nights required for reimbursement by
Medicare and then got rid of him.
The staff at the regional hospital were terrific. . . . We agreed to have him
admitted to their “Adult Behavior Unit.” . . . Despite his dementia, my father
had somehow retained the old-fashioned courtesy and personal decorum of
a by-gone era—being addressed by well-meaning young staff members as
“Sweetie” added to his bewilderment. He hated being there. . . . A few days
after Christmas, when it was evident that my father wasn’t going to improve
and neither could he stay there, a thoughtful and efficient social worker sug-
gested a hospice center also in Haverhill.
The hospice staff was uniformly kind, supportive, unhurried, and caring;
they provided a wonderfully peaceful place to live while dying. He died 4 days
later, and we still regret that he didn’t get there sooner.
[He] died on January 2, 2011, 65 years to the day that he was discharged
from the Army after serving in the Pacific during World War II.
SOURCE: Stephens, 2011. Reprinted with permission from WBUR and Sarah Stephens.

58 DYING IN AMERICA
• “is a broader term that includes hospice care as well as other care
that emphasizes symptom control, but does not necessarily require
the presence of an imminently terminal condition or a time-limited
prognosis. Palliative care may include a balance of comfort mea-
sures and curative interventions that varies across a wide spec-
trum” (VA, 2008, p. 2).
• is “specialized medical care for people with serious illnesses. It is
focused on providing patients with relief from the symptoms, pain,
and stress of a serious illness—whatever the diagnosis. The goal
is to improve quality of life for both the patient and the family”
(CAPC, 2013).
• is “an approach that improves the quality of life of patients and
their families facing the problem associated with life-threatening
illnesses, through the prevention and relief of suffering by means
of early identification and impeccable assessment and treatment of
pain and other problems, physical, psychological, and spiritual”
(WHO, 2002, p. 84).
• “focuses on achieving the best possible quality of life for patients
and their family caregivers, based on patient and family needs and
goals and independent of prognosis. Interdisciplinary palliative
care teams assess and treat symptoms, support decision-making
and help match treatments to informed patient and family goals,
mobilize practical aid for patients and their family caregivers, iden-
tify community resources to ensure a safe and secure living envi-
ronment, and promote collaborative and seamless models of care
across a range of care settings (i.e., hospital, home, and nursing
home)” (Meier, 2011, p. 344).
• “provides relief from pain and other distressing symptoms; affirms
life and regards dying as a normal process; intends neither to has-
ten or postpone death; integrates the psychological and spiritual
aspects of patient care; offers a support system to help patients
live as actively as possible until death; offers a support system to
help the family cope during the patient's illness and in their own
bereavement; uses a team approach to address the needs of patients
and their families, including bereavement counseling, if indicated;
will enhance quality of life, and may also positively influence the
course of illness; is applicable early in the course of illness, in con-
junction with other therapies that are intended to prolong life, such
as chemotherapy or radiation therapy, and includes those investiga-
tions needed to better understand and manage distressing clinical
complications” (WHO, 2013).5
5
A separate World Health Organization definition of palliative care for children is cited
later in this chapter.

• “means patient and family-centered care that optimizes quality

of life by anticipating, preventing, and treating suffering. Pallia-
tive care throughout the continuum of illness involves addressing
physical, intellectual, emotional, social, and spiritual needs and
to facilitate patient autonomy, access to information, and choice”
(Dahlin, 2013; HHS, 2008).
A content analysis of these seven definitions was developed for this re-
port. That analysis revealed four essential attributes of palliative care, used
in constructing the definition of palliative care used in this report:
Palliative care provides relief from pain and other symptoms, supports
quality of life, and is focused on patients with serious advanced illness
and their families.
Palliative care may begin early in the course of treatment for a serious
illness and may be delivered in a number of ways and across the continuum
of health care settings, including the home, assisted living facilities, nursing
homes, long-term acute care facilities, acute care hospitals, and outpatient
clinics. It encompasses
• hospice care, usually including services required under the Medi-

care Hospice Benefit (described in more detail in Chapter 5);
• basic (or, as it is sometimes called in the literature, “primary”) pal-
liative care, delivered by health care professionals who are not pal-
liative care specialists, such as primary care clinicians, physicians
who are disease-oriented specialists (such as oncologists and cardi-
ologists), and others (such as nurses, social workers, pharmacists,
and chaplains) who care for this population but are not certified in
palliative care; and
• specialty palliative care, delivered by health care professionals who
are palliative care specialists, such as physicians who are board
certified in this specialty, palliative-certified nurses,6 and palliative
care-certified social workers, pharmacists, and chaplains.
Specialty palliative care currently is most commonly hospital based and

offered as a consultative service, although growth recently has been seen
in specialty palliative care services in outpatient settings, at home, in nurs-
ing homes, and in long-term acute care facilities (CAPC, 2011; NHPCO,
6 Palliative nurses are certified in one of seven certification programs, such as programs for
advanced certified hospice and palliative nurse and certified hospice and palliative nursing
assistant (NBCHPN®, 2013). Chapter 4 reviews these programs.

60 DYING IN AMERICA
2012a, 2013). A survey of 20 outpatient palliative care practices revealed

that almost all anticipate substantial growth (Smith et al., 2013a).
The delivery of palliative care has been studied in racially and ethnically
diverse patients. In a review of care provided to 1,999 seriously ill African
American and Hispanic patients at a safety net hospital, 65 percent of
African Americans and 70 percent of Hispanics elected do-not-resuscitate
(DNR) orders following palliative care consultation (Sacco et al., 2013).
On admission, by comparison, 80 percent of African American patients
and 71 percent of Hispanic patients had unknown DNR status, and 20
percent and 29 percent, respectively, had elected no DNR status; 29 percent
of all patients were referred to hospice. These findings suggest that pallia-
tive care consultations can help overcome gaps in information that lead to
unwanted, intensive interventions near the end of life. Language barriers
may also hamper palliative care consultations for some populations. Elderly
people who communicate in Asian languages, for example, have been found
to have difficulty finding nursing homes where they can communicate with
staff members (Vega, 2014).
Growth in Hospice Use

Hospice is an essential approach to addressing the palliative care needs
of patients with limited life expectancy and their families. In 1995, 17 per-
cent of all U.S. deaths—some 390,000 decedents—were users of hospice
(IOM, 1997); by 2011, this figure had risen to 45 percent of U.S. deaths,
or more than 1 million decedents (NHPCO, 2012a).
Hospice emerged as a modern concept in the United Kingdom in
the mid-20th century as a result of the pioneering work of Dame Cicely
Saunders, a physician, nurse, and social worker. The approach and con-
cept were popularized in the United States partly through the writing of
Elisabeth Kubler-Ross (NHPCO, undated). For people with a terminal
illness or at high risk of dying in the near future, hospice is a compre-
hensive, socially supportive, pain-reducing, and comforting alternative to
technologically elaborate, medically centered interventions. It therefore has
many features in common with palliative care, and indeed in this report is
considered a subset of palliative care. Various definitions of hospice exist
that reiterate these points:
• The IOM report Approaching Death offers three definitions: a dis-

crete site of care; an organization that provides and/or arranges for
services to patients in homes or other settings; and “an approach to
care for dying patients based on clinical, social, and metaphysical
or spiritual principles” (IOM, 1997, p. 31).

• The VA defines hospice as “a mode of palliative care, often asso-

ciated with specific characteristics of the individual receiving the
care, diagnosed with a known terminal condition with a prognosis
less than 6 months, and desiring therapies with a palliative intent
for the terminal condition” (VA, 2008, p. 2).
• The National Quality Forum (NQF), in A National Framework
and Preferred Practices for Palliative and Hospice Care Quality,
defines hospice as “a service delivery system that provides palliative
care for patients who have a limited life expectancy and require
comprehensive biomedical, psychosocial, and spiritual support as
they enter the terminal stage of an illness or condition. It also sup-
ports family members coping with the complex consequences of
illness, disability, and aging as death nears” (NQF, 2006, p. 3).
With the understanding that in discussing particular studies, the terms

employed by their authors are used, this report uses the NQF definition of
hospice.
As noted in Chapter 1, whereas hospice programs originally were de-
signed primarily to serve people with cancer, hospices now also serve large
numbers of people with heart problems, Alzheimer’s disease, kidney disease,
and other conditions, including (especially before improvements in drug
treatments) HIV/AIDS. As one clinician told the committee in open testi-
mony, “Hospices are known and trusted in their communities” (Harrold,
2013), and hospice use has attained mainstream status.
By 2012 there were 5,500 hospice programs in the United States,
reflecting a steady increase since the first such program opened in 1974
(NHPCO, 2013). (Note that one commercial or nonprofit entity may op-
erate multiple hospice programs, each at a different site.) Nearly three in
five of these programs were free-standing or independent, while the rest
were part of a hospital system, home health agency, or nursing home. In
2012, more than three-fourths of the programs admitted fewer than 500
patients, and the (mean) average daily census of the programs was 149
patients. New hospice programs opening in 2008-2009 were more likely
to be for-profit than those that began operation in earlier years. There also
is a trend toward larger hospices (Thompson et al., 2012). The VA has
shown a commitment to providing veterans with high-quality hospice and
specialty palliative care (Daratsos and Howe, 2007; Edes et al., 2007).
Hospice and palliative care is part of the VA’s standard medical benefits
package, and palliative care consultation teams are available at all VA
hospitals in the United States.
Hospice services are available to many children with serious chronic
diseases, as described in Appendix F. That appendix points to an increas-
ing share of deaths among seriously ill children occurring at home, but

62 DYING IN AMERICA
with substantial racial differences (such as a smaller proportion of African

American children dying at home) nationally and in some states. Still,
children appear to have far less access than adults to hospice. Hospices
responding to a 2007 survey typically cared for only 1-20 children per year
(Friebert, 2009).
Volunteers are an important part of hospice services and, in fact, are
required under hospice conditions of participation for Medicare and Med-
icaid.7 A 2006 study of volunteer participation in 305 hospice programs
found an average of 0.7 volunteer hours per patient per week (Block et al.,
2010). The researchers then matched use of volunteers with an associated
survey of 57,000 family members of decedents. Hospice programs with
the greatest use of volunteers had the highest overall ratings for quality
of care. Using volunteers can also increase access to hospice care in some
circumstances. For example, prison volunteers have helped make hospice
a viable service for fellow inmates who are dying, including elderly prison-
ers serving long sentences and prisoners with AIDS (Casavecchia, 2011;
Mitchell, 2013).
People frequently associate hospice use with earlier death and aban-
donment of treatment. The reality is very different. Some evidence suggests
that on average, hospice patients live longer than similarly ill nonhospice
patients. For example, hospice patients outlived nonhospice patients by an
average of 29 days in a study of almost 4,500 Medicare beneficiaries in
the late 1990s and early 2000s (Connor et al., 2007). In a study of 7,879
Medicare beneficiaries who died of advanced non-small-cell lung cancer
between 1991 and 1999, 26 percent of hospice patients and 21 percent
of nonhospice patients survived 1 year from diagnosis, and 6.9 percent of
hospice patients and 5.5 percent of nonhospice patients survived 2 years
(Saito et al., 2011).
As the discussion of the evidence for the effectiveness of palliative care
later in this chapter further shows, addressing the physical, emotional, and
support needs of patients through a palliative approach may actually extend
life expectancy, in addition to improving the quality of life and increasing
patient and family satisfaction. Box 2-3, for example, describes a case in
which hospice tailored services to meet the needs of a seriously ill elderly
woman who was contemplating suicide.
Growing Support for Palliative Care

First hospice and later a broader palliative care approach arose dur-
ing the latter part of the 20th century. Palliative care is consistent with the
biopsychosocial model of care, prominent in the mental health field for the
7 42 CFR § 418.78 Conditions of Participation: Volunteers.

BOX 2-3
Hospice Responds to a Patient’s Unique Needs
In an interview with a hospice and palliative medicine specialist, an introspec-

tive 86-year-old woman with progressive congestive heart failure and multiple
comorbidities, including depression, was contemplating suicide. The physician
suggested she consider hospice to maximize her quality of life, prevent her from
feeling like a burden to her family, and help her and the family make medical
and social decisions concordant with her goals (Kutner, 2010). At the beginning
of her ensuing hospice stay, the woman was “upset about hospice in general,
specific caregivers, and medical decisions” (Triveldi and Delbanco, 2011, p. 645).
But discussions with family members and health professionals, including assur-
ances that she could disenroll from hospice, proved reassuring (Kutner, 2010).
Members of her health care team later reported: “In the end, she and the hospice
caregivers developed a style that suited all concerned, enabled her to stay in her
home, relieved her discomfort, and facilitated her death at home. With hospice’s
assistance, she was able to die as she wished—in her home with dignity, control,
and comfort” (Triveldi and Delbanco, 2011, p. 645). Death came 22 months after
the initial interview with the physician.
past three decades, which views patients in a broader context than their dis-
ease state and attends to relationships between physical and mental health
(Curlin, 2013; Engel, 1980). In the United States, higher percentages of
dying patients—and far more patients with noncancer diagnoses—receive
hospice or palliative care services compared with other countries, such as
Canada, England, and Germany (Klinger et al., 2013).
Much of the appeal of palliative care flows from its dual emphasis on
(1) providing support that enables patients to remain for as long as possible
at home or in the least restrictive and least intensive setting of care and (2)
ensuring that patients receive care consistent with their values, goals, and
informed preferences, including avoiding the discomfort of unwanted tests
and procedures that may not be necessary or beneficial. With palliative care,
[p]atients are able to remain in their homes as a consequence of better fam-
ily support, care coordination, and home care and hospice referrals; more
hospital admissions go directly to the palliative care service or hospice
program instead of a high-cost intensive care unit (ICU) bed; patients not
benefiting from an ICU setting are transferred to more supportive settings;
and non-beneficial or harmful imaging, laboratory, specialty consultation,
and procedures are avoided. (Meier, 2011, p. 350)
Over the past two decades, hospital-based palliative care programs

have grown from very small numbers to, by 2011, a presence in 67 percent

64 DYING IN AMERICA
of U.S. hospitals with at least 50 beds (CAPC, 2013), 85 percent of U.S.

hospitals with more than 300 beds, 54 percent of public hospitals, and 26
percent of for-profit hospitals (CAPC, 2011). Such programs are especially
common in large hospitals and those affiliated with medical schools (CAPC,
2013). In seven states and the District of Columbia, 80 percent of all hos-
pitals had these services in 2011, while six states had such services in fewer
than 40 percent of hospitals (CAPC, 2011). In addition, almost 70 percent
of children’s hospitals had a palliative care program in 2012 (Feudtner et
al., 2013). Access to inpatient palliative care varies by geography and type
of hospital, with hospitals in the south, for-profit and public hospitals, and
those that are sole community providers less likely to offer it (Goldsmith
et al., 2008).
Several factors have contributed to the rise of palliative care since the
release of Approaching Death (IOM, 1997):
• increases in the numbers and needs of elderly Americans,

• recognition of the numbers and needs of family caregivers,
• greater prevalence of chronic diseases, and
• public attention to controversies and legal cases regarding the right
to die and assisted suicide (Meier, 2010).
In addition, a growing body of research and data has emerged to support

the use of palliative care, as discussed in the evidence review below.
Successful clinical experiences and the support of consumer groups,
influenced by high rates of patient and family satisfaction, have also con-
tributed to broader use of palliative care. For example, the cancer advocacy
group C-Change strongly supports “increasing the use of palliative care
throughout treatment” (Santiago, 2013, p. 5).
Other specialty societies and authorities are beginning to recommend
integration of palliative care into disease-specific treatment and care. Be-
yond the field of cancer, palliative care is supported by groups advocating
improved care in renal disease (Molony, 2013) and neurology (Shaw, 2010).
Authorities also recommend integrating evidence-based specialty medical
care and palliative care for patients with heart failure (Goodlin, 2009).
In general, however, acceptance of recommendations to counsel pa-
tients about palliative care appears to be slow. In a national survey of car-
diologists, for example, less than one-half of respondents said they would
discuss palliative care in the case of two hypothetical elderly patients with
late-stage heart failure, as recommended by clinical guidelines (Matlock
et al., 2010). This departure from cardiology guidelines was especially
pronounced in regions with high use of health care services in the last 6
months of life.

My long-time best friend just died of a slowly progressive brain

tumor. Over the 5 years since his diagnosis, he slowly lost ability to
use his left side, his vision, and finally his speech. However, thanks
to the diligence of family and hospice, friends, and a few respect-
ful caregivers, he spent the last few weeks of his life comfortably
at home, almost constantly in the presence of family, friends, and
his most diligent wife. He spent these days listening to his favorite
music, reading poetry, discussing new ideas and old ones, holding
hands, and giving hugs. His final weeks were the most peaceful
imaginable! Such a profoundly meaningful exit is indeed rare.
The “medicalization” of the end of life which is pervasive in Amer-

ica creates many obstacles to the experience of my friend. The
relatively “new” (but very old) palliative care movement in this
country cannot come to fruition soon enough!*
Illustrative Palliative Care Processes

The MD Anderson Cancer Center’s Supportive and Palliative Care Ser-
vice illustrates how palliative care can function in hospital and outpatient
settings. A palliative care consultant meets with patients and families, and
together they develop treatment goals and identify problems. Early intro-
duction of palliative care helps ensure a greater level of comfort for patients
during the entire course of treatment (Bruera and Hui, 2010).
The clinical process begins with an assessment, using one of several
validated assessment instruments (Hui, 2008).8 To meet palliative care
needs throughout an illness, regular palliative care assessment is then in-
corporated into patient care. Box 2-4 summarizes recent efforts to improve
and standardize the assessment process.
Using initial assessment results, palliative care consultants can help
direct relevant assistance, in conformance with patient and family treat-
ment goals. For example, one problem common among cancer patients but
difficult to identify is depression. As appropriate, the palliative care team
8 Examples include the Edmonton Symptom Assessment System; the Memorial Delirium As-
sessment Scale; and instruments used to assess the patient’s performance status, which helps
determine eligibility for certain cancer therapies and is believed to help predict survival, quality
of life, and functioning (Hui, 2008).

66 DYING IN AMERICA
BOX 2-4
Palliative Care Screening in the Hospital
Hospital palliative care is most commonly provided by a consultation service

based in the hospital. A key question is which inpatients could benefit from a
palliative care consultation, and when. The Center to Advance Palliative Care
convened a consensus panel to develop checklists for identifying these patients.
The panel determined that every hospital, including specialty hospitals,
should identify patients at high risk for unmet palliative care needs using a screen-
ing process on admission that looks for
• a potentially life-limiting or life-threatening condition; and

• five primary criteria of (1) whether the attending physician would not
be surprised if the patient died within 12 months or before adulthood;
(2) frequent hospital admissions; (3) admissions prompted by physical
or psychological symptoms that are difficult to control; (4) complex care
requirements; and (5) a decline in function, feeding intolerance, or unin-
tended decline in weight; and when possible to identify, also looks for
• secondary criteria, including, for example, admission from a nursing
home or similar facility, hip fracture, and lack of advance care planning.
The panel also proposed a similar but separate checklist for assessing
patients daily during their hospital stay, as appropriate. This checklist looks for
• a potentially life-limiting or life-threatening condition; and

• five primary criteria of (1) whether the attending physician would not be
surprised if the patient died within 12 months or before adulthood; (2)
physical or psychological symptoms that are difficult to control; (3) inten-
sive care unit (ICU) stay of 7 or more days; (4) lack of documentation of
or clarity about goals of care; (5) disagreements or uncertainty among
patient, family, and/or staff about medical decisions and treatment prefer-
ences; and when possible to identify, also looks for
• secondary criteria, including, for example, emotional distress of the
patient or family, medical team considering patient as a candidate for
feeding tube placement, tracheostomy, ethics consults, or other similar
procedures or services.
The main components of palliative care assessment include pain and other
symptoms, social and spiritual factors, patient’s understanding of the illness and
prognosis and treatment options, development of patient-centered goals of care,
and discharge planning.
SOURCE: Weissman and Meier, 2011.

helps minimize medications that may contribute to depression, rules out

comorbidities that may contribute to depression, provides or arranges for
counseling or psychotherapy, and prescribes antidepressant medications as
needed (Dev and Sivesind, 2008).
Other palliative care processes focus on spiritual and cultural aspects
of care. For example, chaplaincy services, the most visible mode of spiritual
services, are described in Chapter 4. The importance of spiritual services is
underscored by the spiritual distress experienced by many patients near the
end of life (Hui et al., 2011).
Palliative Care for Children

The World Health Organization (WHO) has developed a definition of
palliative care specifically for children, which states in part: “Palliative care
for children is the active total care of the child’s body, mind and spirit, and
also involves giving support to the family” (WHO, 2013).9 Palliative care
for children differs from adult palliative care based on the stage of child
development, which affects communication and the patient’s understanding
of illness and death; differences between children’s diseases and causes of
death and those of adults; greater involvement of family members as direct
caregivers and decision makers; and the emotional impact of the child’s ill-
ness on parents and siblings (Zhukovsky, 2008).
One important development since the IOM report When Children Die
(IOM, 2003) was issued is the emergence of several sets of guidelines for
pediatric palliative care. These include guidelines of the National Hospice
and Palliative Care Organization (NHPCO, 2009) and the Children’s On-
cology Group and Association of Pediatric Hematology and Oncology
Nurses (Ethier et al., 2010), and the National Cancer Institute’s “PDQ”
for health professionals on pediatric supportive care, including care at the
end of life (NCI, 2014).
Assessment scales that are age- and developmentally appropriate are
used in evaluating pediatric patients. For pain, for example, behavioral ob-
servation scales often are used for children under 4 years of age, while faces,
photographic or drawing scales, color-analog scales, body maps, and other
9 The WHO definition includes the following additional characteristics of pediatric pallia-
tive care, which WHO states should apply to other pediatric chronic disorders, not just life-
threatening illnesses: “It begins when illness is diagnosed, and continues regardless of whether
or not a child receives treatment directed at the disease. Health providers must evaluate and
alleviate a child’s physical, psychological, and social distress. Effective palliative care requires
a broad multidisciplinary approach that includes the family and makes use of available com-
munity resources; it can be successfully implemented even if resources are limited. It can be
provided in tertiary care facilities, in community health centres and even in children’s homes”
(WHO, 2013).

68 DYING IN AMERICA
tools may be appropriate for children ages 3-7 (Zhukovsky, 2008). Adult
visual analog scales and verbal rating scales are often used for children over
age 8. Likewise, diverse interventions are used to manage pain, including
the cognitive-behavioral strategies of distraction, imagery, thought stop-
ping, exercise, relaxation, modeling, desensitization, art therapy, music
therapy, and play therapy.
As noted in Appendix F, most pediatric deaths take place in hospitals,
and the majority of these deaths occur in critical care units, often with an
escalating array of procedures, such as mechanical ventilation. Since 2005,
children’s hospitals, in particular, have developed pediatric palliative care
teams for children with long-term advanced serious illness and/or a broad
array of symptoms. The pediatric palliative care approach combines the
continuity of care and patient-centeredness usually associated with primary
care with highly specialized clinical services. It complements, rather than
replaces, curative and related life-extending specialty services.
Since 1997, for example, a palliative care program at Children’s
Hospital Boston and Dana-Farber Cancer Institute has coordinated care,
helped families make difficult treatment decisions, focused on easing the
child’s pain and suffering, and provided extensive bereavement services
(Groopman, 2014). A longitudinal cohort study of 515 patients receiving
care from six hospital-based pediatric palliative care programs found that
70 percent of the patients survived at least 1 year after receiving their first
palliative care consultation (Feudtner et al., 2011).
States implementing pediatric palliative care programs through Med-
icaid include California, Colorado, Florida, New York, North Carolina,
North Dakota, and Washington (NHPCO, 2012b). Massachusetts has
independently funded and implemented a pediatric palliative care program
(Bona et al., 2011). Excellus BlueCross BlueShield, serving Upstate New
York, developed CompassionNet, a pediatric palliative care program in
2001, serving more than 1,000 families of children with life-threatening
illnesses (Excellus BlueCross BlueShield, 2011). The program enhances
regular health insurance coverage with social and support services, many of
which are not traditionally covered by health insurance, to improve qual-
ity of life for both child and family. Services are carefully tailored to each
family’s unique needs.
Support for family members is an essential part of pediatric palliative
care, beginning in the first days of life. Today, babies born even 16 weeks
prematurely often survive, but their survival may require painful and un-
comfortable interventions and may result in serious, lifelong disabilities,
which places a significant burden on parents who must make fateful deci-
sions. As a result, it has been suggested that the same attention given to
end-of-life decisions for adults be given to end-of-life decisions for children
(Dworetz, 2013).

BOX 2-5
Lessons from Pediatric Care
Pediatrics has long been associated with an emphasis on the importance

of the family. The benefits of this family focus remain applicable as patients grow
older. Pediatric patient- and family-centered care reflects six core values: listen-
ing to and respecting each child and family; flexibility in policies, procedures, and
practices; sharing information with patients and families; providing and ensuring
formal and informal support; collaborating with patients and families at all levels of
health care; and empowering children and families (Committee on Hospital Care
and Institute for Patient- and Family-Centered Care, 2012).
In addition, as described in the text, pediatrics assesses a child’s behav-
ioral readiness to determine his or her role in making medical decisions, rather
than relying on a vague, subjective opinion. End-of-life pediatric care also in-
cludes a strong component of bereavement services and consideration of family
survivorship.
Moreover, in light of today’s changing population demographics (see
Chapter 1), pediatrics offers a perspective on how to deal with new fam-
ily structures—single parents, smaller families and households, and blended
families—and the care needs of people of diverse ethnic, cultural, and racial
backgrounds.
Finally, although adult and pediatric palliative care differ in important

ways, lessons from such care for children can be applied by policy mak-
ers and clinicians to improve the care provided to adults, as described in
Box 2-5.
Palliative Care in Nonhospital Settings

Although most palliative care programs are hospital based, the pal-
liative approach ideally is available as well wherever patients with serious
advanced illness are, including in long-term care facilities, in outpatient
clinical settings, and at home. A literature review focused on four “sen-
tinel articles” found that palliative care outside inpatient settings can en-
hance patient satisfaction; improve symptom control and quality of life;
reduce health care utilization; and, in a population of lung cancer patients,
lengthen survival (Rabow et al., 2013).
Some nursing homes provide residents with access to palliative care
through palliative care consultants, services provided by hospice staff to res-
idents not enrolled in hospice, or enhanced training of nursing home staff
(CAPC, 2008; Meier, 2010). Training in some instances has focused on pain

70 DYING IN AMERICA
management and quality improvement (Robert Wood Johnson Foundation,

2004). Community-based palliative care programs, other than those pro-
vided by hospices, are also beginning to appear, although these programs
are developing unsystematically, and so at present lack standardization with
respect to management processes, services, and methods of integration with
other health services (Kamal et al., 2013). Home health agencies, too, are
beginning to offer palliative care services (Labson et al., 2013). Advances
in communication technology, such as remote monitoring systems that can
alert off-site health professionals to changes in a patient’s vital signs or
medical status, may spur additional growth in such programs.10
In New Mexico, a Hospital at Home® project, conducted by Presbyterian
Healthcare Services and inspired by developmental work at Johns Hopkins
University, assisted patients with congestive heart failure, chronic obstruc-
tive pulmonary disease (COPD), and other serious conditions that put
them at risk of repeated hospital admissions (Cryer et al., 2012). Services
included diagnostic services, arrangements for medical supplies and equip-
ment, transportation, daily physician house calls, and home visits from a
nurse once or twice per day. The project succeeded in meeting Presbyterian’s
core quality metrics 100 percent of the time for 323 patients and achieved
higher patient satisfaction ratings than usual care. Other examples appear
in Chapter 5.
Palliative care does not always have to be provided by specialist clini-
cians. In fact, to meet the palliative care needs of all people with advanced
serious illness who are likely approaching death, palliative care precepts
must be integrated across the continuum of care and generally embraced
by clinicians who care for this population. For example, an article by on-
cology palliative care specialists describes the important role of basic, or
“primary,” palliative care as “delivered every day in the oncology office”
(Cheng et al., 2013, p. 84). These authors stress the importance of several
actions by the office-based oncologist: a “repeating conversation” on cop-
ing with cancer, use of a symptom assessment scale, a spiritual assessment,
and referral to a hospice information visit for patients with a prognosis of
3-6 months. Delivery of basic palliative care by primary care and regular
specialist physicians would help meet a rising demand that exceeds the sup-
ply of palliative care specialists, simplify demands on patients and families,
and reinforce existing relationships (Quill and Abernethy, 2013).
10
Monitoring technologies in development in 2013 included a sensor mat that is placed
under the mattress to monitor a patient’s sleep patterns, heart rate, and breathing rate; a
videoconferencing “robot” to help physicians conduct real-time virtual consultations; cloud-
based applications to help patients track vital signs and access their plan of care; and remote
monitoring sensors that can be placed throughout the home to detect falls and missed medi-
cations. Several of these products have already been approved by the U.S. Food and Drug
Administration (InformationWeek, 2013).

Interdisciplinary Team Approach

The interdisciplinary team approach that typically distinguishes pal-
liative care contributes to the development and implementation of com-
prehensive plans of care, helps ensure coordination of care, enhances the
anticipation and remediation of problems that arise during transitions and
crises, facilitates quality improvement, and contributes to good pain man-
agement (Meier, 2011). According to Mitchell and colleagues (2012, p. 3),
“The high-performing team is now widely recognized as an essential tool
for constructing a more patient-centered, coordinated, and effective health
care delivery system,” with the patient and family at the team’s center.
Since the publication of Approaching Death in 1997, hospice and pal-
liative medicine has become a defined physician specialty, and palliative
care has also become a specialty area in the professions of nursing, social
work, and chaplaincy (as described in more detail in Chapter 4) (ABMS,
2013; American Osteopathic Association, 2013; APC, 2013; NASW, 2013;
NBCHPN®, 2013). In addition to palliative medicine specialists, palliative
nurses, social workers, and chaplains, team members may include, for
example, pharmacists, dietitians or nutritionists, physical therapists, oc-
cupational therapists, psychotherapists, speech-language pathologists, and
others such as art or music therapists and child life specialists (Adams et
al., 2011; American Occupational Therapy Association, 2011; American
Society of Health System Pharmacists, 2002; Cruz, 2013; Hebert et al.,
2011; NASW, 2013, 2014; Pollens, 2004; Puchalski et al., 2009; Vitello,
2008). A team with such broad composition is most likely to have the
competence and time to meet patients’ needs involving medication man-
agement, loss of appetite, functional limitations, depression, difficulties in
swallowing and communicating, spiritual guidance, and other problems
arising, perhaps for the patient’s first time, during an advanced stage of
illness (NQF, 2006).11
The interdisciplinary approach should begin with the initial patient as-
sessment. For example, a nurse may perform the initial assessment, which
leads to the involvement of other professional team members as appropri-
ate. The composition of the team depends, to a large extent, on resource
availability. In a smaller hospital, in rural settings, and under conditions of
11 To give one example of team composition, Kaiser Permanente’s TriCentral Palliative Care
program, a model that serves patients at home instead of only in the hospital, has estimated the
following full-time equivalent staff complement for a census of 30 palliative care patients: 0.4
physician, 2.2 registered nurses, 1.2 social workers, 1.2 certified home health aides, 0.3 intake
and liaison registered nurse, 0.6 clinical nurse specialist supervisor, 0.2 chaplain, 0.3 program
director, and 1.0 clerk, for a total staff-to-patient ratio of 1:4, plus volunteers. The program
includes patient care conferences every 1-2 weeks (Brumley and Hillary, 2002, p. 26). In
pediatric palliative care, as noted in Appendix F, staffing patterns are “remarkably diverse.”

72 DYING IN AMERICA
a shortage of specialized personnel, teams may be more rudimentary than

is the case in large, well-staffed academic medical centers. Identification of
which interdisciplinary team members are necessary in any particular situ-
ation is part of the assessment process.
Evidence for the Effectiveness of Palliative Care

As noted, a growing evidence base supports the effectiveness of pallia-
tive care for those nearing the end of life. A study of 524 dying patients at
five VA medical centers and affiliated nursing homes and clinics in 2006-
2007 showed that those who received inpatient palliative care consultations
had significantly better outcomes in five of six domains studied: information
and communication, access to home care services, emotional and spiritual
support, well-being and dignity, and care around the time of death (Casarett
et al., 2008). A trend toward higher scores for the sixth domain, bereave-
ment services, was not statistically significant. The VA’s well-established,
highly rated Home Based Primary Care Program for patients with complex
chronic disabling diseases includes palliative care services (Beales and Edes,
2009). This program has been in place for four decades, and provides
comprehensive longitudinal primary care and palliative care delivered by
an interdisciplinary team in the homes of veterans with serious chronic dis-
abling conditions. The program is associated with a 24 percent lower total
cost of VA care per patient per year.
A landmark study of palliative care published in 2010 found that it can
lead to improved quality of life and greater longevity when provided con-
currently with disease-focused care (Temel et al., 2010). In this 3-year study,
151 patients with metastatic non-small-cell lung cancer at Massachusetts
General Hospital were randomly assigned at the time of diagnosis to either
palliative care or no palliative care, and all patients also received standard
oncology treatment. Quality-of-life scores were an average of 6.5 points
higher for the palliative care group on the 136-point Functional Assessment
of Cancer Therapy-Lung (FACT-L) scale. Symptoms of depression were
nearly 2.5 times more common in the non–palliative care group (38 percent
versus 16 percent). Moreover, median survival was 30 percent longer for the
palliative care group (11.6 months versus 8.9 months), even though fewer
patients in that group received aggressive care near the end of life (defined
in the study as receipt of chemotherapy within 2 weeks of death, admission
to hospice 3 days or less before death, or no admission to hospice care)
(33 percent versus 54 percent). The authors conclude that palliative care,
begun early in the course of treatment, led to significant improvements in
quality of life and mood and was associated with longer survival in this

population.12 Illustrating this study’s importance, the American Society of

Clinical Oncology cited it as a “strong evidence base” in formulating a
provisional clinical opinion (now also adopted in guidelines of the National
Comprehensive Cancer Network) advising oncologists to offer palliative
care concurrently with standard specialty care, beginning at the time of
diagnosis (NCCN, 2013; Simone and Jones, 2013; Smith et al., 2012).
Other studies tend to confirm that palliative care benefits patients.
A systematic review of 23 studies conducted in Australia, Canada, Italy,
Norway, Spain, Sweden, the United Kingdom, and the United States found
that use of expert home palliative care teams more than doubled the odds
of dying at home (Gomes et al., 2013). This review further found that home
palliative care reduced the symptom burden for patients, while usual care
increased it.
In a randomized controlled trial of 512 patients hospitalized with
life-limiting diseases in Denver, Portland (Oregon), and San Francisco in
2002-2003, palliative care patients, compared with “usual care” patients,
had greater satisfaction with communication and the care experience and
fewer critical care unit admissions. No differences in survival or symptom
control were found (Gade et al., 2008).
A randomized controlled trial of 322 patients with advanced cancer in
New Hampshire and Vermont in 2003-2008 found that a specific psycho-
educational palliative care intervention led to higher scores on quality of
life and mood (Bakitas et al., 2009). No differences were found in symptom
intensity, hospital days, critical care unit admissions, or emergency depart-
ment visits. The intervention (Educate, Nurture, Advise Before Life Ends,
or ENABLE) consisted of four weekly education sessions, with monthly
follow-up sessions conducted by an advanced practice nurse.
12 A follow-up analysis of this study explored whether the increased survival rates of the
palliative care patients resulted from improvements (that is, reductions) in depression alone.
The analysts found that “the data do not support the hypothesis that treatment of depression
mediated the observed survival benefit from [early palliative care]” (Pirl et al., 2012, p. 1310).
The effect of palliative care on patient longevity is of considerable interest. However, the effects
of palliative care on life span—and the factors that may account for those effects—remain
unclear. According to Meier (2011, p. 349), “Conjectures accounting for the possibility that
palliative care and hospice may prolong life include reduction in depression, which is an
independent predictor of mortality in multiple disease types; avoidance of the hazards of hos-
pitalization and high-risk medical interventions; reduction in symptom burden; and improved
support for family caregivers that permits patients to remain safely at home.” The association
between palliative care and increased life span is a promising target for further research.

74 DYING IN AMERICA
A number of studies suggest that specialty palliative care has the capac-
ity to
• improve information and communication, access to home care

services, emotional and spiritual support, well-being and dignity,
and care around the time of death (Casarett et al., 2008);
• reduce depression, enhance quality of life, and increase survival
(Temel et al., 2010);
• reduce critical care unit mortality (Elsayem et al., 2006); and
• prevent emergency department visits, hospitalizations, and deaths
away from home (Brumley et al., 2007).
The case for greater use of and support for specialty palliative care can
be made based on clinical, economic, and ethical considerations: “Early
provision of specialty palliative care improves quality of life, lowers spend-
ing, and helps clarify treatment preferences and goals of care” (Parikh et al.,
2013, p. 2350).
With respect to hospice, high quality of care in hospice overall has
been well established in the literature for three decades. As early as 1984,
hospice was associated with greater patient satisfaction when compared
with conventional care for patients with serious illness nearing the end of
life (Kane et al., 1984). As noted earlier, there is suggestive evidence that
hospice use may be associated with longer survival (Connor et al., 2007;
Saito et al., 2011). Hospice was also found to improve care for people
with the difficult diagnosis of dementia in a survey of 538 bereaved family
members in Alabama, Florida, Massachusetts, Minnesota, and Texas (Teno
et al., 2011). In that study, the family members of patients who received
hospice services “at the right time” reported fewer unmet needs, fewer
concerns about quality of care, higher quality of care, and better quality
of dying. In a survey of 292 family members of deceased nursing home
residents enrolled in hospice, 64 percent rated the quality of care rendered
before hospice care began as good or excellent for both physical and emo-
tional symptoms (Baer and Hanson, 2000). For quality of care after hospice
care began, ratings increased to 93 percent for physical symptoms and 90
percent for emotional symptoms. And in a 10-item family satisfaction sur-
vey involving bereaved family members of nearly 1,600 people who died
of chronic diseases in 2000, overall satisfaction was found to be better in
home hospices than in hospitals, nursing homes, and home health agencies
(Teno et al., 2004) (see Table 2-1).
THE PURSUIT OF QUALITY IN CARE NEAR THE END OF LIFE

Two aspects of the quality of palliative care are especially important
for establishing accountability: first, which components of palliative care

TABLE 2-1 Family Satisfaction with Alternative Models for End-of-Life Care by Last Site of Care, 2000
Hospital Nursing Home Home Health Home Hospice
Indicator of Family Satisfaction (%) (%) Services (%) (%)
Patient did not receive enough help with pain 19 32 43 18
Patient did not receive enough help with shortness of breath 19 24 38 26
Patient did not receive enough emotional support 52 56 70 35
Physician did not satisfy family desire for contact 52 31 23 14
Family had enough contact with physician but had concerns 27 18 27 18
about physician communication
Patient was not always treated with respect 20 32 16 4
Family had concerns about own emotional support 38 36 46 21
Family had concerns about having enough information about 50 44 32 29
what to expect while patient was dying
Staff did not know enough about patient’s medical history 15 20 8 8
Overall quality of care was excellent 47 42 47 71
SOURCE: Teno et al., 2004.

75
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contribute most to better patient care outcomes, and second, which metrics
are most useful for evaluating the quality of care delivered by individual
providers. Current efforts to measure and report on these aspects of care
are described below. Opportunities to overcome limitations of these efforts
are then reviewed, followed by the committee’s proposed core components
of quality care near the end of life.
Approaches to Improving Quality of Care Near the End of Life

Care of patients with serious advanced illness near the end of life
is complex. Various interventions have been implemented and evaluated
to identify aspects of quality care near the end of life that lead to posi-
tive outcomes and patient and family satisfaction. A systematic review of
23 studies of interventions to improve continuity of care, care coordination,
or transitions between settings of care for people with serious illness found
the best, yet moderate, evidence for improvement in patient or family satis-
faction; evidence generally was weak for other outcomes, including patient
or family quality of life, caregiver burden, and utilization of health care
resources (Dy et al., 2013). The greatest success in improving satisfaction
was achieved through interventions that combined components of a coordi-
nator of care, patient and/or family involvement through health education
or another form of assistance, and/or additional patient assessment. Other
interventions studied incorporated care plans and use of a palliative care
specialist. Quantifying the impact of these components on outcomes was
not possible because of the heterogeneity of the studies included in the re-
view. The reviewers also found that “many studies were limited by numer-
ous methodological issues such as insufficient power for reported outcomes
(primarily utilization), measuring outcomes not specifically targeted by the
intervention, and using measurement tools (especially for quality of life
outcomes) not specific for populations with advanced disease” (p. 443).
A broader systematic review, conducted by essentially the same team,
found similar methodological deficiencies in many of the 90 studies included
in the analysis (AHRQ, 2012). Still, the authors found moderate evidence
for improvements in satisfaction with interventions targeting continuity,
coordination, and transitions between care settings. Those interventions
that incorporated patient-centered quality improvement components, such
as patient, family, or caregiver education and self-management, showed the
strongest evidence of effectiveness. Evidence was moderate for improve-
ments in health care utilization outcomes among interventions that targeted
communication and decision making, but specific quality improvement
methods were not assessed for these types of interventions.
Methodological challenges relating to individual interventions (e.g.,
insufficient statistical power) and larger-scale reviews of interventions (e.g.,

lack of meta-analysis) make it difficult to quantify the impact of specific

components on quality of care and quality of life. Still, information can be
gleaned from these studies and reviews, which show that moderate evidence
exists to support the impact of some quality improvement interventions on
outcomes including satisfaction with care among patients nearing the end
of life and their families.
Use of end-of-life care pathways has also been the subject of a sys-
tematic review; in this case, researchers found no clinical trials meeting
their criteria for high-quality research design that evaluated the benefits
of end-of-life care pathways for quality of care and quality of life (Chan
and Webster, 2013). The researchers suggest that this gap in the literature
reflects a clear need to investigate the effectiveness of pathways and other
guidelines for end-of-life care.
Current Quality Measurement and Reporting Efforts

In the mid-2000s, a group building on efforts of the Robert Wood
Johnson Foundation’s Critical Care End-of-Life Peer Workgroup used a
consensus process to develop 18 proposed measures for assessing the qual-
ity of palliative care (Mularski et al., 2006). Of these, 14 address processes
of care at the patient level, while 4 address structural aspects of critical care
delivery. The proposed set of measures was designed to stimulate further
work on measurement and enhancement of the quality of palliative care.
NQF (2012) has endorsed 14 evidence-based quality measures for
palliative and end-of-life care. (NQF calls these items “measures,” but be-
cause they are broad categories, they might better be termed “criteria” or
“domains.”) The NQF measures are as follows:
• pain screening, for hospice and palliative care (NQF #1634);

• pain assessment, for hospice and palliative care (NQF #1637);
• patients treated with an opioid who are given a bowel regimen
(NQF #1617);
• patients with advanced cancer assessed for pain at outpatient visits
(NQF #1628);
• dyspnea treatment, for hospice and palliative care (NQF #1638);
• dyspnea screening, for hospice and palliative care (NQF #1639);
• patients admitted to an intensive care unit who have care prefer-
ences documented (NQF #1626);
• treatment preferences, for hospice and palliative care (NQF #1641);
• percentage of hospice patients with documentation in the clinical
record of a discussion of spiritual/religious concerns or documen-
tation that the patient/caregiver did not want to discuss such con-
cerns (NQF #1647);

78 DYING IN AMERICA
• comfortable dying (NQF #0209);

• hospitalized patients who die an expected death with an implant-
able cardioverter defibrillator (ICD) that has been deactivated
(NQF #1625);
• family evaluation of hospice care (NQF #0208);
• Consumer Assessments and Reports of End of Life (NQF #1632);
and
• bereaved family survey (NQF #1623).
In 2013 the National Consensus Project for Quality Palliative Care

(NCP) released a new set of Clinical Practice Guidelines, rooted, as the
name suggests, more in consensus than in evidence for effectiveness (Dahlin,
2013). The NCP is a collaborative effort of the American Academy of Hos-
pice and Palliative Medicine, Center to Advance Palliative Care, Hospice
and Palliative Nurses Association, National Association of Social Workers,
National Hospice and Palliative Care Organization (NHPCO), and Na-
tional Palliative Care Research Center. The Clinical Practice Guidelines are
divided into eight domains:
• structure and processes of care;

• physical aspects of care;
• psychological and psychiatric aspects of care;
• social aspects of care;
• spiritual, religious, and existential aspects of care;
• cultural aspects of care;
• care of the patient at the end of life; and
• ethical and legal aspects of care.13
To illustrate the complexity of these domains, the domain “care of the

patient at the end of life” emphasizes multiple preferred practices, including
assessment and management of symptoms; documentation and communi-
cation with patient, family, and all health care providers about signs and
symptoms of the dying process; family guidance; and bereavement support
both before and after death, all the while keeping social, spiritual, and
cultural concerns in mind. The same domain includes four guidelines, with
a list of associated criteria. The guidelines center on (1) identification, com-
munication, and management of signs and symptoms; (2) care planning;
13
The NCP domains are generally consistent with the quality domains suggested by the
American Geriatrics Society and emphasized in the Approaching Death report (IOM, 1997):
physical and emotional symptoms; support of function and autonomy; advance care planning;
aggressive care near death—site of death, cardiopulmonary resuscitation (CPR), and hospi-
talization; patient and family satisfaction; global quality of life; family burden; survival time;
provider continuity and skill; and bereavement.

(3) postdeath care; and (4) bereavement support. An interdisciplinary team

approach is considered essential.
A large set of quality indicators was developed through a RAND
Corporation effort called Assessing Care of Vulnerable Elders (ACOVE)
(Wenger et al., 2007). While these indicators cover numerous conditions
and care processes and the entire continuum of care, from screening and
prevention to diagnosis, treatment, and follow-up, end of life is considered
a particular condition within ACOVE. Illustrating how these measures
can be used, researchers applied 16 ACOVE indicators for end-of-life
care and pain management to the care of almost 500 patients who died at
the University of California, Los Angeles, Medical Center between April
2005 and April 2006 (Walling et al., 2010). These indicators, which could
be measured using information found in patient medical records, fit into
three domains: eliciting goals of care, pain assessment and management,
and dyspnea assessment and management. Of note, these domains have
content overlap with NQF-endorsed measures. The researchers found that
physician-patient/family communication was “the most striking area in
need of quality improvement” (p. 1061). Deficits were also found in as-
sessing breathing difficulties, documenting deactivation of ICDs, and es-
tablishing bowel regimens for patients taking opioids. The study found
further that critical care units addressed goals of care only about half the
time. High scores were obtained for pain assessments, pain treatment, and
treatment for breathing difficulties (dyspnea).
In conjunction with the effort of CMS to establish quality measures for
evaluating hospices, the Carolinas Center for Medical Excellence (the Qual-
ity Improvement Organization in North and South Carolina), in conducting
the PEACE (Prepare, Embrace, Attend, Communicate, Empower) Project,
initially identified 174 measures in the literature, from governmental agen-
cies including the Agency for Healthcare Research and Quality (AHRQ)
and CMS and from previous quality measurement efforts by NQF and the
RAND Corporation. Of these 174 measures, 88 were submitted to a tech-
nical expert panel for review (Schenck et al., 2010). The panel gave high
ratings to 34 measures, falling within all eight domains of the NCP’s Clini-
cal Practice Guidelines, but most heavily in the domain of physical aspects
of care. In a related exercise, 39 instruments measuring mainly physical,
psychological, or social aspects of palliative care, identified through a lit-
erature review, received high psychometric ratings (Hanson et al., 2010).
Specific new quality indicators have been advocated. One opinion, for
example, is that quality standards should prohibit placing feeding tubes in
people with advanced dementia, in line with recommendations of leading
professional groups (Fischberg et al., 2013; Unroe and Meier, 2013).

80 DYING IN AMERICA
Limitations of Current Quality Measurement and Reporting Efforts

There are important opportunities to improve existing quality measures
for care near the end of life. The NQF-endorsed measures listed above
reflect substantive limitations. Of these 14 items, 4 involve pain, 3 patient
preferences, 3 bereaved family or close friend perceptions of the quality of
care, 2 dyspnea, 1 ICD, and 1 “comfortable dying” (NQF, 2012). While
NQF’s Consumer Assessments and Reports of End of Life (CARE) survey
assesses decision making using a postdeath survey of the bereaved family,
there is no NQF-endorsed measure of shared decision making that asks
the seriously ill person about his/her perceptions of the quality of care and
the quality of shared decision making. Current NQF-endorsed measures
also do not adequately measure the experience of caregiving, advance care
planning, concordance with patient preferences, burdensome transitions,
or the timeliness of referral to palliative care services. Presumably, these
omissions result from a lack of evidence validating specific measures in any
of these areas.
Patient and family satisfaction has been used as a relatively common
indicator of the quality of end-of-life care. But the measurement of family
satisfaction is subject to methodological inconsistencies—for example, the
use of qualitative versus quantitative methods or direct versus indirect ques-
tions to ascertain satisfaction (Aspinal et al., 2003). Indirect methods may
illuminate specific components of care that affect satisfaction and perceived
quality of care. An examination of 117,000 surveys from 819 hospices in
2005, for instance, found that family members were more likely to rate
hospice services as excellent if they, as family members, were regularly in-
formed about the patient’s condition and treatment, if they could identify
a single nurse as being in charge of the patient’s care, and if they believed
the hospice was providing them with the right amount of emotional sup-
port (Rhodes et al., 2008). Still, the measurement of satisfaction may be
influenced by factors other than quality per se, such as sociodemographic
factors or fulfilment of expectations (Aspinal et al., 2003).
Efforts to establish criteria for evaluating the quality of care near the
end of life are ongoing. As previously mentioned, a preliminary set of 18
quality measures or criteria was developed through a consensus process
in the mid-2000s (Mularski et al., 2006). However, a systematic review of
16 publications on quality indicators for palliative care led researchers to
conclude that, while a number of quality indicators have been identified,
few development processes for these indicators have been described in de-
tail, and additional specification of methodological characteristics is needed
(Pasman et al., 2009). An update to that review identified an additional 13
publications containing 17 sets of quality indicators (including 9 new sets

and 8 sets also identified in the previous review) and again determined that
further development of indicators is needed (De Roo et al., 2013).
In nursing homes, place of death (in the nursing home or in the hospi-
tal) and hospice enrollment were identified as important quality measures
for end-of-life care, ones that could be measured using existing administra-
tive data, such as the Minimum Data Set, Medicare enrollment files, and
Medicare claims data (Mukamel et al., 2012). Both of these measures were
found to be more effective in identifying low-quality than high-quality out-
liers. Illustrating how these two measures can be used, a study of decedents
nationwide between 2003 and 2007 found that within nursing homes, resi-
dents with dementia were more likely than other residents to use hospice
and to avoid transfer to a hospital as the place of death (Li et al., 2013).
Residents of nursing homes with a high prevalence of dementia were also
more likely than residents of other nursing homes to use hospice.
Measurement of care components agreed upon as constituting quality
care may identify systematic variation in care quality. For example, smaller
or independent hospices may be less likely than larger or chain-affiliated
programs to achieve comprehensive implementation of preferred practices
identified by NQF (Carlson et al., 2011).14 A similar issue arises regarding
place of death—namely, the probability that a person will die in a critical
care unit, in another type of hospital unit, or in a more comfortable set-
ting. On this measure, geography appears to be a significant factor, at least
for people with cancer. Nationwide, from 2003 to 2007, about 29 percent
of Medicare decedents with advanced cancer died in a hospital, but rates
ranged from 7 percent in Mason City, Iowa, to 47 percent in Manhattan
(Goodman et al., 2010).
Coordination of care is a linchpin of high-quality end-of-life and pal-
liative care and is particularly difficult to measure. An examination of 111
root-cause analysis reports submitted by outpatient departments to the VA’s
National Center for Patient Safety in 2005-2012 showed that most delays
in diagnosis and treatment involved poor communication and coordination
among health professionals, other staff, and patients. “Failures in the pro-
cess of follow-up and tracking of patients were especially prominent, men-
tioned in more than half of the reports” (Giardina et al., 2013, p. 1371).
At times, quality scores turn out to be unrelated to quality of care, or
facilities meeting standards have widely varying performance on recog-
nized quality measures. For example, the Health Resources and Services
14
Similarly, an American Society of Clinical Oncology initiative to measure office-based
practices’ adherence to cancer care guidelines found that showing physicians how well their
practice performed failed to lead to measurable improvements in performance. The authors
speculate that this failure may relate to small practices’ lack of financial resources to institute
formal quality improvement efforts (Blayney et al., 2012).

82 DYING IN AMERICA
Administration and the Center for Medicare & Medicaid Innovation use
an assessment developed by the National Committee for Quality Assurance
(NCQA) to certify community health centers as patient-centered medical
homes. One study found that while all 30 of the surveyed centers met cri-
teria for becoming an NCQA-recognized patient-centered medical home,
no association was found between performance on the NCQA assessment
that determines this recognition and the quality of patient care (Clarke et
al., 2012). In what may be of particular interest to advocates of improved
end-of-life care, the authors note that the NCQA assessment does not
include measures reflecting the provision of social or “enabling” services,
such as assistance in obtaining government benefits, transportation, and
community outreach. Experience suggests the great difficulty of devising
standards that take into account factors as diverse as staff composition,
clinical performance, provision of ancillary and supporting services, and
quality improvement efforts. Overall, any effort to recognize high-quality
care near the end of life faces formidable methodological challenges.
Opportunities for Enhancing Measurement and Reporting

According to the IOM (2013, p. 301), “Cancer care quality measures
provide a standardized and objective means for assessing the quality of
cancer care delivered,” and objective measures can serve the same function
for end-of-life care. That report’s recommendation on quality measurement
(Recommendation 8) entails developing “a national quality reporting pro-
gram for cancer care as part of a learning health care system” (p. 301). To
this end, the report says, “the Department of Health and Human Services
should work with professional societies to:
• Create and implement a formal long-term strategy for publicly

reporting quality measures for cancer care that leverages existing
efforts.
• Prioritize, fund, and direct the development of meaningful quality
measures for cancer care with a focus on outcome measures and
with performance targets for use in publicly reporting the perfor-
mance of institutions, practices, and individual clinicians.
• Implement a coordinated, transparent reporting infrastructure
that meets the needs of all stakeholders, including patients, and
is integrated into a learning health care system” (IOM, 2013,
pp. 301-302).
In any setting and at any stage of life, high-quality health care is “safe,
effective, patient-centered, timely, efficient, and equitable” (IOM, 2001,
p. 40). The third of these characteristics, patient-centeredness, is especially

important for patients near the end of life. Care marked by preset protocols
and impersonal treatment can deprive patients of their essential dignity,
autonomy, and comfort. The committee believes it is essential for end-of-
life care to reflect awareness of the individual’s personal history and unique
physical, emotional, intellectual, cultural, spiritual/religious, financial, and
social situation, as well as the roles of family members and other key indi-
viduals in the person’s life. High-quality patient-centered care at the end of
life should also, to the extent possible, reflect patients’ values, goals, and
informed preferences (see Chapter 3); maintain quality of life under the
constraints of advancing disease; and support family and other caregivers.
Health policy makers recently have been focusing on identifying high-
quality providers as a means of improving the overall quality of health care,
and end-of-life care is no exception. Hospices face a financial penalty (a
2 percentage point reduction in the market basket percentage increase for
a particular fiscal year) under the Affordable Care Act (ACA) for failure
to report on quality measures endorsed by a “consensus-based entity”15
(CMS, 2013b; see also Meier, 2011, p. 353). Initial implementation of this
Hospice Quality Reporting Program (HQRP) by CMS called for hospices to
report on only two measures: the NQF #0209 pain measure (“the number
of patients who report being uncomfortable because of pain at the initial
assessment who report that pain was brought to a comfortable level within
48 hours”) and a structural measure addressing the organization’s Quality
Assessment and Performance Improvement Plan. Beginning in 2014, how-
ever, these previously used measures will be discontinued, and hospices will
be required under the HQRP to complete and submit to CMS the Hospice
Item Set, which collects data on seven NQF-endorsed measures:
• patients treated with opioid who are given a bowel regimen (NQF
#1617),
• pain screening (NQF #1634),
• pain assessment (NQF #1637),
• dyspnea treatment (NQF #1638),
• dyspnea screening (NQF #1639),
• treatment preferences (NQF #1641), and
• beliefs/values addressed (if desired by the patient) (modified from
NQF #1647).
Starting in 2015, in addition to the Hospice Item Set quality reporting

requirements, CMS will require that hospices complete the Hospice Ex-
perience of Care Survey, which will gather information from caregivers of
15 PatientProtection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong.,
2d Sess. (January 5, 2010), § 3004(c).

84 DYING IN AMERICA
deceased hospice patients about patient and family experiences with hospice
care (CMS, undated; HHS, 2013).
Palliative care programs, by contrast, are not required to report on the
quality of the care they provide, nor are accountable care organizations or
large systems. The result is a lack of transparency and accountability. There
is no consensus on quality measures to use for this purpose or a general ap-
proach for determining the locus of accountability for the quality of end-of-
life care—the palliative care program or the physician, the hospital where
the program is based, or the entire hospital or other integrated system?
A voluntary advanced certification program for palliative care pro-
grams has been created by the Joint Commission, which accredits hospitals
and other providers of care. Advanced certification is accorded to “hospi-
tal inpatient programs that demonstrate exceptional patient and family-
centered care and optimize the quality of life for patients (both adult and
pediatric) with serious illness” (Joint Commission, 2014a). Certification
criteria include whether the program employs an organized interdisciplin-
ary approach, uses practice guidelines, directs the clinical management of
patients and coordinates care, offers round-the-clock availability of the full
range of palliative care services, and includes a measurement-based quality
improvement component (Joint Commission, 2014b). While programs are
required to collect data on at least four performance measures, including
two clinical measures, the Joint Commission does not specify which mea-
sures must be implemented; each program may choose the performance
measures that are most important and relevant and thus necessitate review
and analysis. As of May 2014, 66 programs had received certification under
this program (Joint Commission, 2014c).16
In addition, a task force of the American Academy of Hospice and
Palliative Medicine and an advisory group of the Hospice and Palliative
Nurses Association have begun collaborating to identify a core set of
evidence-based performance measures that would apply to all hospice and
palliative care programs across care settings. This effort, called “Measur-
ing What Matters,” has the aim of developing a list of basic, advanced,
and “aspirational” measures that build on the work on the NCP domains
and guidelines and the NQF measures, as well as other previously devel-
oped measures (American Academy of Hospice and Palliative Medicine,
undated-a). A technical advisory panel referred 34 measures to a clinical
user panel, which narrowed the list down to 12 existing measures from
16
The first five programs accorded certification, in 2012, were those based at Regions
Hospital, St. Paul, Minnesota; Strong Memorial Hospital, Rochester, New York; Mount Sinai
Medical Center, New York, New York; St. Joseph Mercy Oakland, Pontiac, Michigan; and
The Connecticut Hospice, Inc., Branford, Connecticut (HealthPartners, 2012).

the PEACE Project, NQF, ACOVE, NHPCO, and NCQA/the American

Medical Association-Physician Consortium for Performance Improvement
(PCPI) that fall within six of the eight NCP domains (American Academy
of Hospice and Palliative Medicine, undated-a,b). The list will be culled
further. The broad applicability of the selected measures and the develop-
ment of a common denominator, a task that is planned for the next phase
of this effort, will allow for benchmarking and comparison across pro-
grams and settings (American Academy of Hospice and Palliative Medicine,
undated-c).
Proposed Core Components of Quality End-of-Life Care

Many stakeholders—patients, caregivers, families, the public, health
professionals, health care administrators, payers, and policy makers—
would benefit from an authoritative, validated list of the core components
of quality end-of-life care. Core components would apply to care near the
end of life of every type, provided in every setting. They would include not
only hospice and palliative care but also the usual care received by people
with advanced serious illness who likely are approaching death, which
may be provided by primary care physicians, physician specialists, nurses,
and other personnel in hospitals, nursing homes, assisted living facilities,
outpatient clinics, private homes, and other settings.
Unfortunately, the evidence base falls short of supporting the establish-
ment of such a validated list. Nonetheless, the committee proposes a list
of components, based on existing quality indicators, the existing literature,
the committee members’ expert judgment, and their varied and extensive
experience. This list, shown in Table 2-2, is advanced to suggest an agenda
for research and policy development, because each item included should
be tested to determine whether it is supported by clinical findings across a
wide range of patients and by the opinions of patients, families, and clini-
cians involved in care near the end of life. In addition, the most valid way
to measure each of the proposed components of quality end-of-life care will
need to be identified.
Key to all 12 of these core components is flexibility and individual
tailoring over time, reflecting patient and family priorities and prefer-
ences. Those involved in a patient’s care must be nimble in responding to
individual needs and evolving circumstances. Regular meetings between
the care team and the patient and family may facilitate achieving these
components of quality end-of-life care as the patient’s and family’s needs
evolve over time.

86 DYING IN AMERICA
TABLE 2-2 Proposed Core Components of Quality End-of-Life Care

Component Rationale
Frequent assessment of patient’s Interventions and assistance must be based on
physical, emotional, social, and accurately identified needs.
spiritual well-being
Management of emotional distress All clinicians should be able to identify
distress and direct its initial and basic
management. This is part of the definition of
palliative care, a basic component of hospice,
and clearly of fundamental importance.
Offer referral to expert-level palliative People with palliative needs beyond those
care that can be provided by non-specialist-level
clinicians deserve access to appropriate
expert-level care.
Offer referral to hospice if the patient People who meet the hospice eligibility
has a prognosis of 6 months or less criteria deserve access to services designed to
meet their end-of-life needs.
Management of care and direct contact Care of people with serious illness may
with patient and family for complex require specialist-level palliative care
situations by a specialist-level palliative physician management, and effective
care physician physician management requires direct
examination, contact, and communication.
Round-the-clock access to coordinated Patients in advanced stages of serious
care and services illness often require assistance, such as
with activities of daily living, medication
management, wound care, physical comfort,
and psychosocial needs. Round-the-clock
access to a consistent point of contact that
can coordinate care obviates the need to dial
911 and engage emergency medical services.
Management of pain and other All clinicians should be able to identify and
symptoms direct the initial and basic management
of pain and other symptoms. This is part
of the definition of palliative care, a basic
component of hospice, and clearly of
fundamental importance.
Counseling of patient and family Even patients who are not emotionally
distressed face problems in such areas as loss
of functioning, prognosis, coping with diverse
symptoms, finances, and family dynamics,
and family members experience these
problems as well, both directly and indirectly.
Family caregiver support A focus on the family is part of the definition
of palliative care; family members and
caregivers both participate in the patient’s
care and require assistance themselves.

TABLE 2-2 Continued

Component Rationale
Attention to the patient’s social context Person-centered care requires awareness
and social needs of patients’ perspectives on their social
environment and of their needs for social
support, including at the time of death.
Companionship at the bedside at time of
death may be an important part of the
psychological, social, and spiritual aspects of
end-of-life care for some individuals.
Attention to the patient’s spiritual and The final phase of life often has a spiritual
religious needs and religious component, and research shows
that spiritual assistance is associated with
quality of care.
Regular personalized revision of the Care must be person-centered and fit current
care plan and access to services based circumstances, which may mean that not all
on the changing needs of the patient the above components will be important or
and family desirable in all cases.
NOTE: The proposed core components of quality end-of-life care listed in this table were
developed by the committee. Most of the components relate to one of the domains in the
Clinical Practice Guidelines for Quality Palliative Care set forth by the National Consensus
Project for Quality Palliative Care (Dahlin, 2013).
THE PROBLEM OF PROGNOSIS

The problem of prognosis—establishing the life expectancy of a pa-
tient with an advanced serious illness or medical condition who is likely
approaching death—is important for several reasons. A patient’s prognosis
• has important personal implications, affecting the patient’s state of

mind and decisions about how to spend the next several weeks or
months and the family’s support for the patient;
• has financial implications that may affect the patient’s and family’s
decisions about earning and spending;
• has family caregiver implications, affecting family caregivers’ un-
derstanding of what will be expected of them and for how long;
• has clinical implications, affecting decisions about treatment of the
illness and of comorbid conditions, and referrals to hospice and
social services;

88 DYING IN AMERICA
BOX 2-6
Prognosis and the Medicare Hospice Benefit
Under the Medicare Hospice Benefit, the patient’s prognosis may have nega-
tive practical consequences. As discussed in Chapter 5, one of the eligibility
requirements for the Medicare Hospice Benefit is an expected prognosis of 6
months or less if the disease runs the expected course. According to the former
medical director of a home hospice, for example, when a patient’s pulmonologist
determined that her chronic obstructive pulmonary disease (COPD) prognosis
was more than 6 months, the pulmonologist effectively discharged her from hos-
pice against her will. She thereby lost access to regular nursing care and other
supportive services and died less than 2 months later. The writer offers the opinion
that patients’ eligibility for hospice should be based on “their demonstrated need
for supportive care services—in other words, based on the weight of their symp-
toms, their level of functional impairment, or the burden their illness imposes on
caregivers” (Groninger, 2012, p. 455).
• may have legal implications, affecting the preparation and imple-

mentation of advance directives17; and
• affects eligibility for hospice care under the Medicare Hospice
Benefit (see Box 2-6).
Prognostic Uncertainties
Predicting prognosis is easier for certain diseases, such as solid-tumor
metastatic cancers, than for many other common and serious conditions,
such as stroke, heart failure, COPD, end-stage renal disease, frailty, demen-
tia, and Parkinson’s disease. Among elderly people especially, assessing the
overall prognosis may be difficult because these patients frequently suffer
from two or more such conditions. Predicting the time course and prognosis
of disabling genetic or congenital disorders that affect children is similarly
problematic.
Although most people have high levels of disability by the last few
months of life, the trajectory of disability, like life expectancy, is difficult to
17 For example, the New Jersey Supreme Court’s holding that prognosis, broadly defined,
affects the legality of decisions to withhold or withdraw life-sustaining treatment in accordance

with patients’ determined preferences: In re Quinlan, 70 N.J. 10, 355 A2d 647 (1976); Mat-
ter of Jobes, 108 N.J. 335, 529 A2d 434 (1987); and Matter of Peter by Johanning, 108 N.J.
365, 529 A2d 419 (1987).

predict, even when people with the same medical condition are compared.
Variation in disability trajectories “poses challenges for the proper alloca-
tion of resources to care for older persons at the end of life” (Gill et al.,
2010, p. 1180). Nevertheless, an increasing level of disability, combined
with frailty and accumulating symptoms, may be the most useful signal of
the need for palliative care assessment and subsequent provision of pallia-
tive services.
Predictive Models
Expected longevity is typically the major focus of prognosis. An ap-
pendix to Approaching Death (IOM, 1997, Appendix D) describes efforts
to develop clinical forecasting models, especially for acute myocardial
infarction, coma, pediatric intensive care, and critical care. The discussion
emphasizes several limitations of such models, some of which are techni-
cal: statistical limitations, inherent imperfections, and inadequate account-
ing for disease specificity and the effects of interventions. However, other
limitations may be inherent in the predictive process: death is not the only
outcome of interest; critical illness is a dynamic process; the models’ com-
plexity impedes their usefulness; and the perspective of the model differs
from the perspective of the patient or family.
Since the release of that report, new forecasting models have emerged.
Table 2-3 lists components of these models, and as this table reveals, there
TABLE 2-3 Factors Used to Predict Mortality in Five Illustrative

Prognostic Models
Factors PIPS* PaP CARING HRS Cheng
Cancer or metastatic disease (any X X X
site)
Malignant effusion X
Liver metastases X
Lung disease X
Heart failure X
Diabetes X
Anorexia or loss of weight X X X
Dyspnea X
Age (with more points for each older X
age category; applies to adults only)
continued

90 DYING IN AMERICA
TABLE 2-3 Continued
Factors PIPS* PaP CARING HRS Cheng
Sex X
General health status X
Mental test score X
Performance status X X X
Critical care unit admission with X
multiorgan failure
Hospital admissions (two or more) X
Nursing home residence X
Applicability of two or more X
noncancer hospice guidelines
Current tobacco use X
Body mass index X
Pulse rate X
White blood count X X
Platelet count X
Lymphocyte count or lymphopenia X
Hypercalcemia X
C-reactive protein X
Urea X
Bathing X
Walking several blocks X
Pushing/pulling large objects X
Managing money X
Physician’s survival prediction (in X
weeks)
NOTES: CARING = Cancer, Admissions ≥2, Residence in a nursing home, Intensive care unit
admit with multiorgan failure, ≥2 Noncancer hospice Guidelines; HRS = Health and Retire-
ment Study; PaP = Palliative Prognostic; PIPS = Prognosis in Palliative Care Study.
*These factors were found in the PIPS study to predict survival at both 2 weeks and 2
months. Factors found to predict survival at 2 weeks only were dyspnea, dysphagia, bone
metastases, and alanine transaminase. Factors found to predict survival at 2 months only
were primary breast cancer, male genital cancer, tiredness, loss of weight, lymphocyte count,
neutrophil count, alkaline phosphatase, and albumin.
SOURCES: PIPS: Gwilliam et al., 2011; PaP: Pirovano et al., 1999; CARING: Fischer et al.,
2006; HRS: Lee et al., 2006; Cheng: Cheng et al., 2013.

is little overlap. (A forecasting model for pediatric mortality is mentioned

in Appendix F.)
A systematic review determined that the most accurate of 13 models
for predicting life expectancy in patients with advanced, incurable cancer is
the Palliative Prognostic (PaP) score, along with a PaP variant that includes
dementia (D-PaP) (Krishnan et al., 2013). PaP scores estimate survival at
1 month, and the PaP model has been externally validated (Maltoni et al.,
1999; Pirovano et al., 1999). The authors of the systematic review note the
need for further research to establish reliable prognoses across a broader
spectrum of time and to determine the effect of the use of prognostic tools
on the quality of end-of-life care.
With regard to non-disease-specific models, a systematic review of 16
indices predicting mortality risk in people over age 60 in community, hos-
pital, or nursing home settings “identified several high-quality prognostic
indices.” However, the authors found that “there is insufficient evidence at
this time to recommend the widespread use of prognostic indices in clinical
practice” (Yourman et al., 2012, p. 190). According to the authors, limita-
tions of the models include potential bias and failure to predict either very
low or very high risk of mortality—precisely the information most likely
to be useful to clinicians. The conclusion that these limitations may impede
a clinician’s ability to apply prognostic models in a clinical setting appears
to bear out the skepticism expressed in Approaching Death (IOM, 1997,
Appendix D).
The following are examples of the many studies presenting prognostic
models:
• A British prospective cohort study based at multiple palliative care

centers—the Prognosis in Palliative Care Study (PIPS)—produced
a composite model for predicting survival of cancer patients at 2
weeks and 2 months (Gwilliam et al., 2011). This model has not
been externally validated (Krishnan et al., 2013).
• Another study identified criteria for determining the likelihood
of dying within 1 year. According to the study authors, these
“CARING” criteria can be used at the time of hospital admission
to determine whether the patient is ready for palliative care (Fischer
et al., 2006). This model has been validated (Youngwerth et al.,
2013).
• Still another study used 1998 Health and Retirement Study data
for people over age 50 living in the community to identify 12 inde-
pendent predictors of mortality within 4 years (Lee et al., 2006).
According to the systematic review of non-disease-specific indices
cited above, this model “was well calibrated and showed very
good discrimination,” although it was not externally validated

92 DYING IN AMERICA
(Yourman et al., 2012, p. 186). While this model shows promise,

its relevance to the population that is near the end of life has not
yet been demonstrated given that it is currently validated only for
mortality within 4 years.
Acute Physiology and Chronic Health Evaluation (APACHE) and

ePrognosis are two tools that can be used to assess prognosis in clinical
settings. APACHE is a scoring system that uses predictor variables and
measures collected shortly after a patient’s admission to the intensive care
unit to determine severity of disease and likelihood of in-hospital mortality
(Knaus et al., 1985, 1991; Wong and Knaus, 1991). ePrognosis is a website
and software application that aggregates prognostic indices to provide clini-
cians with information about patients’ possible mortality outcomes based
on answers to questions about certain predictor variables (such as those
listed in Table 2-3) (ePrognosis, 2014).
There are also informal methods for developing prognoses, with less
proven reliability. A group of palliative care specialists in oncology, for
example, concluded that “it is relatively easy to predict which patients
have less than six months to live” (Cheng et al., 2013, p. 85). According to
these authors, four factors (“Cheng” factors shown in Table 2-3) “should
all trigger discussion about hospice” (p. 85).
Another informal tool that has been used to identify patients for whom
palliative care may be appropriate is the “surprise” question: “Would I be
surprised if this patient died in the next 12 months?” (Moss et al., 2008,
2010). While not perfect, the “surprise” question can be applied simply and
effectively by health care professionals as a way to identify patients with a
poor prognosis.
It should be cautioned, however, that “there will always be some uncer-
tainty in prognosis” (Smith et al., 2013c, p. 2448). For example, if a physi-
cian knows a patient belongs to a group with a 25 percent risk of dying
within 6 months, the physician still does not know whether this particular
patient is in the 25 percent subset or the 75 percent subset. Smith and col-
leagues (2013c) recommend that physicians be honest with patients about
the boundaries of predictive knowledge, address patients’ and families’
emotions about uncertainty, and help them live in the present despite an
uncertain prognosis (see also Chapter 3).
FAMILY CAREGIVERS
Family caregivers (with family defined broadly; see the guiding prin-
ciples in Box 1-3 in Chapter 1) provide many types of assistance to people
with a chronic disease or disabling condition. An estimated 66 million
Americans, or 29 percent of the adult population, are caregivers; nearly

two-thirds are women (National Alliance for Caregiving, 2009). They pro-
vide an average of 20 hours of services per week and are heavily involved
in assisting with instrumental activities of daily living. Information about
the number and responsibilities of family caregivers is not available specifi-
cally for the population nearing the end of life. This report uses the term
“family caregivers” to describe people in this role; other terms used include
“informal caregivers,” “carers,” “primary caregivers,” and “volunteer care-
givers.” Whatever the term, these individuals often exhibit extraordinary
commitment, provide incalculable value, and face significant burdens in
carrying out the caregiver role.
While many family members readily assume this responsibility—and
may not consider it a “burden” at all—it takes a largely unrecognized toll.
The toll increases when family caregivers must administer medications (in-
cluding opioid pain relievers); maintain complex equipment; and perform
the physical labor of feeding (and possibly preparing special diets), bathing,
toileting, changing and cleaning, dressing, turning, and transporting a fam-
ily member (National Alliance for Caregiving, 2009; Reinhard et al., 2012).
Caregiving takes a psychological toll when family members worry about
performing all those tasks safely and well, when caregiving keeps them
from meeting responsibilities to other family members, when their loved
one is frightened or in pain, when they receive little training or guidance,
and when they do not receive help in managing their own fears (National
Alliance for Caregiving, 2009). When the patient is a child, the family care-
giver role is made more difficult by the relative youth and inexperience of
the parents, the frequent need to travel long distances to obtain subspecialty
pediatric care, deep strains on the parents’ relationship with each other, and
the vulnerability of siblings to profound emotional stress (Sourkes, 2013).
I belong to a caregivers group which is supportive. People who

are not caregivers don’t understand the continuous burden of the
role and seem to think it can be walked away from or put aside
forever or for a while. Not so. The stress feels as if I’m constantly
holding my breath. That combined with dealing with financial
concerns, the medical and insurance communities is just too much.
. . . Transportation is also a barrier; just getting the sick person to
appointments is physically demanding, and visiting in the hospi-
tal is wearying. Parking is a big expense. Pushing a wheelchair is
physically demanding.*

94 DYING IN AMERICA
Caregiving also takes a financial toll when families face high out-of-
pocket costs for services and equipment or when family income decreases
because family caregivers must reduce their work hours or leave their jobs
altogether (Evercare and National Alliance for Caregiving, 2007; Feinberg
et al., 2011; National Alliance for Caregiving, 2009). Employer support
may therefore be crucial for employed family caregivers. Aware of caregiver
absenteeism and lost productivity, some employers offer greater flexibility
in working hours and location or other special assistance (Coalition to
Transform Advanced Care, 2013).
Given an explicit choice, most people would prefer to spend their last
weeks and days in their own home, free of pain, clean and comfortable,
and in control—not in emergency departments, hospitals, and critical care
units away from family and familiar surroundings (see Chapter 3). As dis-
cussed earlier in this chapter, new models of home and community health
care delivery and improved communication technologies are making that
choice increasingly possible; however, adequate support for family caregiv-
ers remains an unmet need.
It took all of our savings to keep my husband at home. And it took

five of us to give him the round-the-clock care he needed.*
In previous generations, caregiving was a widely expected role of

women in families, and caregiving responsibilities often lasted only briefly,
as people died at younger ages or sooner after the onset of a serious illness.
Today’s families are smaller, and many women work outside the home.
Moreover, not only may caregiving be needed for lengthy periods, but also
it is becoming more complex, requiring management of medical equipment
and medication regimens, wound care, nutrition, mental health care, use of
community resources, and so on—for the most part with no formal training
(Feinberg, 2013; Reinhard et al., 2012). Some key information about family
caregivers appears in Table 2-4.
Meanwhile, the demand for family caregiving is growing with the rising
prevalence of chronic diseases (Feinberg, 2013), as well as the long-term
care trends that encourage more care at home and fewer nursing home
placements (see Chapter 5). And the ratio of potential caregivers (people
aged 45 to 64) to people 80 and older is expected to fall from 7:1 in 2010
to 4:1 by 2030 (Redfoot et al., 2013).

TABLE 2-4 Some Key Facts About U.S. Family Caregivers

Subject Figure Descriptor
Supply of family 4:1 Projected ratio of potential caregivers (aged
caregivers 45-64) to people potentially in need (over 80)
in 2030 (Redfoot et al., 2013)
Medication management 78% Of caregivers that perform medical/nursing
tasks, the proportion regularly administering
drugs (average 5-9 medications per day)
(Reinhard et al., 2012)
No home visits 69% Proportion of caregivers not assisted with
home visits by a health professional (Reinhard
et al., 2012)
Caregivers who are 73% Proportion of caregivers employed at some
employed time while caregiving (National Alliance for
Caregiving, 2009)
Caregiving for parents 72% Proportion of employed workers serving as
caregivers who care for a parent or parent-in-
law (Mendes, 2011)
Caregiving for elderly 67% Proportion of employed workers serving as
people caregivers who care for someone over age 75
(Mendes, 2011)
Duration of caregiving 55% Proportion of employed workers serving as
caregivers who have been doing so for 3 years
or longer (Mendes, 2011)
Worker absenteeism 6.6 days Employed family caregivers’ average annual
number of days of employed work lost as a
result of caregiving (Witters, 2011)
Lost productivity $25.2 billion Annual cost of lost productivity due to
absenteeism caused by family caregiving
(Witters, 2011)
Economic impact $450 billion Value of family caregiving services in 2009
(Feinberg et al., 2011)
In theory, family caregivers should be in an ideal position to foster

patient-centered care, starting with an understanding of the patient’s health
status, helping to identify care goals, and participating in the development
of the plan of care (Gillick, 2013). But such participation requires support
from the health care team. Although palliative care tends to provide such
support, even families involved in palliative care often feel unprepared to
perform the caregiving role (Abernethy et al., 2008; Kilbourn et al., 2011;
Payne et al., 1999). And patients and families not receiving palliative care
may lack any systematic caregiver support.

96 DYING IN AMERICA
We share the care of my mother-in-law with worsening dementia.

The fragmentation of care is challenging, even for professional
health care providers. Home support is almost non-existent, and
we tremble regarding the limited options when/if her needs exceed
what we can provide in our homes.*
Personal attributes that help in the caregiver role include adaptability

and resilience, and caregivers benefit from the constructive involvement of
other family members. But they are at risk of loss of control, loss of identity,
and loss of relationships, as well as exhaustion and eventual bereavement
(Sourkes, 2013). In addition,
Caregivers are at increased risk of disease because of the burden and dif-
ficulties associated with caregiving. A lot don’t sleep or eat right. They
neglect themselves, so they’re at higher risk of depression and anxiety,
coronary types of problems and are more prone to getting sick. (Vuong,
2013, quoting Dr. Linda Ercoli, Assistant Professor of Psychiatry, Univer-
sity of California, Los Angeles)
Results of a systematic review of 19 studies from six countries (Canada,

Israel, Norway, Saudi Arabia, the United Kingdom, and the United States)
were inconclusive as to whether gender, age, and relationship to the patient
affect caregiver stress. In 8 of the studies, however, stress was found to in-
crease as the patient’s condition worsened and death approached (Williams
and McCorkle, 2011).
Family caregivers receive services as well as provide them. Those ser-
vices may include respite care (temporary custodial care of the patient) and
bereavement services—counseling, assistance with arrangements, and other
supports for as long as 1 year after a death—which are a component of
quality palliative care. Both respite and bereavement services are covered
under the Medicare Hospice Benefit (CMS, 2012).
AARP, the National Alliance for Caregiving, and other groups have
helped call attention to the extent of and challenges entailed in family
caregiving. However, research on family caregivers’ roles, needs, behavior,
health risks, success in performance, interaction with professional members
of the health care team, and use of respite care and other support services
is not highly developed. Research on family caregiving remains sparse, per-
haps reflecting its lack of visibility as compared with the services offered
by health care professionals.

Family caregivers have received some protections from the federal

government. The Family and Medical Leave Act of 1993 guarantees up
to 12 weeks of job-protected unpaid leave for attending to the care needs
of a spouse, child, or parent, but not other family members (DOL, 2013).
The National Family Caregiver Support Program, established by the Older
Americans Act, as amended in 2000, has helped increase awareness of the
importance of family caregivers by establishing the caregiver as a client
and providing family counseling, support groups, training, and respite care
(AoA, 2012; Feinberg, 2013). The ACA includes multiple references to
caregivers and may help them by promoting models of care that prevent
or facilitate transitions between care settings (Feinberg, 2013). Medicaid’s
Cash & Counseling program, available in about 15 states, permits benefi-
ciaries to pay family members modest sums for home care services in some
cases (National Resource Center for Participant-Directed Services, 2013).
And family caregivers of seriously injured veterans (who served after Sep-
tember 11, 2001) may receive a stipend, comprehensive training, medical
services, and other services under the VA Program of Comprehensive As-
sistance to Family Caregivers (VA, 2013).
An IOM committee investigating health care workforce needs for an
aging America took note of the importance of integrating family caregiv-
ers into health care teams and providing them with better training. One
recommendation of that committee reads: “Public, private, and community
organizations should provide funding and ensure that adequate training op-
portunities are available in the community for informal caregivers” (IOM,
2008, p. 255).
RESEARCH NEEDS
A comprehensive review of studies on end-of-life care (NINR, 2013)
undertaken since the publication of Approaching Death (IOM, 1997) iden-
tifies a shortage of research on the changing demographic characteristics
of populations experiencing serious advanced illnesses or multiple chronic
conditions, especially kidney and liver conditions and HIV/AIDS. Accord-
ing to the National Institute of Nursing Research (NINR) report, “Issues
related to economics, ethics, and access must be integrated into new re-
search paradigms[,] and attention to culture, ethnicity, and minorities must
be made to produce a measurable shift in the focus of research grants, the
sources of funding dollars, and the dissemination of meaningful results to
inform and educate the public” (NINR, 2013, pp. xi-xii). The report sug-
gests that public-private partnerships could help fill these research gaps and
improve the delivery of hospice and palliative care.
This chapter has identified numerous important areas for further re-
search, including

98 DYING IN AMERICA
• the prevalence and nature of care that is neither beneficial nor

wanted, and practical ways to avoid it;
• the effect of palliative care on longevity;
• the elements of palliative care likely to offer the greatest improve-
ments in quality of life;
• evidence-based measures of quality end-of-life care, beyond those
identified to date by NQF and including aspects of the proposed
core components listed in Table 2-2;
• family caregivers’ roles, needs, behavior, health risks, success in
performance, interaction with other members of the health care
team, and use of respite care and other support services;
• reliable approaches to prognosis that start earlier in the disease
trajectory, and assessment of whether more accurate prognoses lead
to improvements in quality of life and other outcomes of care; and
• the effects and value of specific types of clinical innovations in
delivering end-of-life care.
Pediatric-related research needs may be especially pressing. Appendix F

suggests the need for research in the following areas for children near the
end of life:
• comparative effectiveness studies of different approaches to symp-

tom management and bereavement support;
• analyses of care received in emergency departments, outpatient
settings, and hospices and through home health agencies;
• cohort studies examining the effect of palliative care on outcomes
and on the patient experience; and
• studies of how best to staff, manage, and finance hospital-based pe-
diatric palliative and community-based pediatric hospice services.
A general lack of investment in research on palliative care is identified

in a review of the palliative care landscape referenced earlier in this chapter
(Meier, 2011). That review suggests that the National Institutes of Health
(NIH), in particular, can make important contributions in this field. In
2006-2010, NIH funded 240 percent more palliative care projects than it
did in 2001-2005, but palliative care still accounted for only a fraction of
1 percent of all NIH grants (Gelfman et al., 2010).
Given that palliative care is inherently patient-centered, the Patient-
Centered Outcomes Research Institute (PCORI) may be a potential fund-
ing source for research in this field going forward. PCORI was established
under the ACA, and its research “is intended to give patients a better un-
derstanding of the prevention, treatment, and care options available, and

the science that supports those options”18 (PCORI, 2014). In developing

its research priorities, PCORI reviewed previous comparative effectiveness
prioritization efforts and found 10 common priority areas for such re-
search; palliative care was one of these areas (PCORI, 2012). While its own
national priorities and research agenda do not specifically call for research
on palliative care, many of the topics highlighted are relevant to this field,
including prognostication, shared decision making, health care teams, and
differences in patient preferences.
Besides concerns about the quantity of research on topics related to
end-of-life care, there are concerns about the quality of such research. One
concern is that an emphasis on developing quantifiable results through
such traditional methods as randomized controlled trials tends to omit key
questions, such as why a treatment was effective, how patients viewed their
experience, and what mechanisms caused the outcomes observed (Fleurence
et al., 2013; Steinhauser and Barroso, 2009; see also IOM, 2009, p. 31).19
Efforts to broaden the types of investigations used in comparative effective-
ness research and involve consumers in the design and execution of studies
may help address this concern (Fleurence et al., 2013).
One potentially rich area of research involves linking major academic
medical centers to community-based settings, using treatment results expe-
rienced by large numbers of patients to show which treatments work best
for whom, and then disseminating that information back to clinicians and
patients in useful ways (Westfall et al., 2007). This approach, typical of a
“learning health care system,” would transform the nation’s clinical trials
enterprise (IOM, 2012, especially p. 15, Table 2-1) and is endorsed in the
recent IOM report on cancer care (IOM, 2013).
Practice-based research networks (PBRNs) are one practical way to
conduct “practice-relevant” research in community-based settings. For ex-
ample, PBRNs that are supported by AHRQ link primary care practices
in research relevant to community-based health care (AHRQ, 2013). Each
PBRN includes at least five primary care practices; most of the research
conducted by the current 131 networks has focused on underserved, low-
income, and minority populations (Peterson et al., 2012). PBRNs are even
collaborating to create consortia of research networks (Calmbach et al.,
2012; Peterson et al., 2012).
2d Sess. (January 5, 2010), § 6301.
19 Randomized controlled trials may also exclude patients with multiple chronic conditions
or chronic conditions combined with disabilities (Fleurence et al., 2013). This exclusion can
leave out many people nearing the end of life. Trials also typically ignore family-related fac-
tors, including the role of family caregivers. In general, moreover, clinical trials assess only
the efficacy of an intervention under carefully controlled conditions, not its effectiveness in
the real world.

100 DYING IN AMERICA
Significant resources to facilitate the conduct of high-quality palliative

care and end-of-life research have emerged since Approaching Death (IOM,
1997) was published. The National Palliative Care Research Center, act-
ing in partnership with the Center to Advance Palliative Care, provides a
mechanism for establishing research priorities, preparing a new generation
of researchers, and coordinating and supporting studies aimed at improv-
ing care (NPCRC, 2013). The Palliative Care Research Cooperative Group,
established in 2010, offers a mechanism for connecting researchers and
clinicians across varied clinical settings and facilitating timely completion
of complex studies, including randomized controlled trials, by pooling re-
sources and expertise across sites (Abernethy et al., 2010).
FINDINGS, CONCLUSIONS, AND RECOMMENDATION
Findings
This study yielded the following findings on the delivery of person-
centered, family-oriented end-of-life care.
Burdensome Transitions
People nearing the end of life often experience multiple transitions be-
tween health care settings, including high rates of apparently preventable
hospitalizations. These transitions can fragment the delivery of care and
create burdens for patients and families (Coleman et al., 2006; Jencks et
al., 2009; Naylor et al., 2013; Teno et al., 2013).
Growth of Hospice
The role of hospice in end-of-life care has been increasing in the past
two decades. Hospice grew from being the locus of 17 percent of all U.S.
deaths in 1995 to 45 percent in 2011 (IOM, 1997, p. 40; NHPCO, 2012a).
Growth of Specialty Palliative Care

The years since Approaching Death (IOM, 1997) was published also
have seen the emergence and growth of specialty palliative care. By 2011,
fully 85 percent of all hospitals with 300 or more beds reported having pal-
liative care services (CAPC, 2011, 2013; see also Chapter 4 for information
about the number of board-certified hospice and palliative physicians and
certified nurses).

Provision of Palliative Care

The guidelines and expert advice of professional associations encourage
oncologists, cardiologists, and other disease-oriented specialists to counsel
patients about palliative care. Nevertheless, widespread adoption of the
practice of timely referral to palliative care appears to be slow, despite sup-
port for integrating and improving the basic level of knowledge of palliative
care among all clinicians who treat patients with serious advanced illness
(Cheng et al., 2013; Goodlin, 2009; IOM, 2013; Matlock et al., 2010;
Molony, 2013; Quill and Abernethy, 2013; Shaw, 2010; Smith et al., 2012).
Interdisciplinary Teams for Palliative Care

Besides physician specialists in hospice and palliative medicine, mem-
bers of palliative care interdisciplinary teams often include specialty ad-
vanced practice nurses and registered nurses, social workers, chaplains,
pharmacists, rehabilitation therapists, direct care workers, and family mem-
bers (Adams et al., 2011; American Occupational Therapy Association,
2011; American Society of Health System Pharmacists, 2002; Brumley and
Hillary, 2002; Cruz, 2013; Hebert et al., 2011; Meier, 2011; NASW, 2013,
2014; NQF, 2006; Pollens, 2004; Puchalski et al., 2009; Vitello, 2008).
Impact of Hospice and Palliative Care on Longevity

Some evidence suggests that on average, palliative care patients (includ-
ing hospice patients) may live longer than similarly ill patients receiving
usual care (Connor et al., 2007; Saito et al., 2011; Temel et al., 2010).
Impact of Palliative Care on Quality of Life

Palliative care has been associated with a higher quality of life, as mea-
sured by indicators that include information and communication, access to
home care, emotional and spiritual support, well-being and dignity, care at
time of death, and a lighter symptom burden (Casarett et al., 2008; Gomes
et al., 2013; Rabow et al., 2013; Temel et al., 2010).
Prognosis
Since Approaching Death was published in 1997, new predictive mod-
els have emerged that enhance clinicians’ ability to make valid and reliable
medical prognoses. Lack of adequate prognostication may prevent some pa-

tients from receiving appropriate hospice care because of the 6-month prog-
nosis rule in the Medicare Hospice Benefit (described in Chapter 5) (Fischer
et al., 2006; Gwilliam et al., 2011; Krishnan et al., 2013; Pirovano et al.,
1999; Tax Equity and Fiscal Responsibility Act of 198220; IOM, 1997, Ap-
pendix D; for commentary on the 6-month rule, see, e.g., Groninger, 2012).
Family Caregiving
With an aging population, demand for family caregiving is increasing.
At the same time, the types of tasks being performed by family caregivers
are expanding from personal care and household tasks to include medical/
nursing tasks, such as medication management and other services for those
near the end of life. Three in 10 U.S. adults are family caregivers (National
Alliance for Caregiving, 2009; Redfoot et al., 2013; Reinhard et al., 2012).
Information about the number and responsibilities of caregivers specifically
for those nearing the end of life is not available.
Conclusions
Care near the end of life can be complex. People with serious advanced
illness and their families could benefit from all clinicians having a basic
level of competence in addressing the palliative care needs of this popula-
tion. Such patients and their families may further require the involvement
of interdisciplinary teams of professionals specifically trained in palliative
care. Such care teams—whether available in hospitals, long term acute care
facilities, nursing homes, hospices, clinics, or patients’ homes—combine
services and expertise to meet the broad needs of patients and families.
However, palliative care currently is unavailable in many geographic areas
and in many settings where people with advanced serious illness receive
care. Transformational change is required, building on evidence about high-
quality, compassionate, and cost-effective care that is person-centered and
family-oriented and available wherever patients nearing the end of life may
be. A further need is to continue to build and strengthen that evidence base
while responding to challenges posed by new communication and biomedi-
cal technologies, growing demands on caregivers, and demographic change.
Approaching Death (IOM, 1997) was published 17 years ago. Then,
hospice was well on its way to achieving mainstream status, and pallia-
tive care was in the early stages of development. Now, hospice is in the
mainstream, and palliative care is well established in hospitals and in the
20 Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), Public Law 97-248, section
122.

professions of medicine, nursing, social work, and chaplaincy. Yet many

clinicians and families still appear to not regard palliative care as an es-
sential component of high-quality care. The needed shift among the public
and health care providers toward recognizing all that hospice and palliative
care can achieve remains incomplete.
Recommendation 1. Government health insurers and care delivery pro-

grams as well as private health insurers should cover the provision of
comprehensive care for individuals with advanced serious illness who
are nearing the end of life.
Comprehensive care should
• be seamless, high-quality, integrated, patient-centered, family-

oriented, and consistently accessible around the clock;
• consider the evolving physical, emotional, social, and spiritual
needs of individuals approaching the end of life, as well as those
of their family and/or caregivers;
• be competently delivered by professionals with appropriate exper-
tise and training;
• include coordinated, efficient, and interoperable information trans-
fer across all providers and all settings; and
• be consistent with individuals’ values, goals, and informed
preferences.
Health care delivery organizations should take the following steps to

provide comprehensive care:
• All people with advanced serious illness should have access to

skilled palliative care or, when appropriate, hospice care in all set-
tings where they receive care (including health care facilities, the
home, and the community).
• Palliative care should encompass access to an interdisciplinary
palliative care team, including board-certified hospice and pal-
liative medicine physicians, nurses, social workers, and chaplains,
together with other health professionals as needed (including geri-
atricians). Depending on local resources, access to this team may
be on site, via virtual consultation, or by transfer to a setting with
these resources and this expertise.
• The full range of care that is delivered should be characterized
by transparency and accountability through public reporting of
aggregate quality and cost measures for all aspects of the health

care system related to end-of-life care. The committee believes that

informed individual choices should be honored, including the right
to decline medical or social services.
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Clinician-Patient Communication
and Advance Care Planning
There are many barriers to clear communication on people’s prefer-

ences for end-of-life care. Albeit well intentioned, past efforts to ensure
that patients’ wishes are known and followed have fallen short, even when
codified into legislation and regulation, as a result of multiple factors:
• the natural reluctance of patients, families, and clinicians to explore

death and dying;
• a fragmented health care system that can make the discussion of
end-of-life preferences “someone else’s problem”;
• poor-quality communication in the conversations that are held,
often in hurried or crisis situations; and
• inadequate structural supports for advance care planning, including
clinician training, payment, and record keeping.
The “living will”—conceived as a document designed to protect people’s

legal right to have the amount and kinds of medical treatment they want
even if they can no longer express that choice themselves—was perceived as
the solution for Americans’ concerns about being “hooked up to machines”
for long periods or, conversely, being protected against premature “pulling
of the plug.” Nonetheless, this legal approach has been disappointingly
ineffective in improving the care people nearing the end of life receive and
in ensuring that this care accords with their informed preferences.
This chapter describes some of the reasons for that failure and the
evolution of new and potentially more effective approaches to advance care
planning. These approaches share the following features:
117

• They do not consider advance care planning a one-time activity, but

instead emphasize discussion of goals, values, and care preferences
among individuals, family, health care agents, and care providers
over the life span. Ideally, these discussions would start early in
adulthood, addressing global values and the identification of po-
tential surrogate decision makers, and focusing on more specific
treatment preferences for older persons and those facing serious
illness. With changes in health status, they would take on increas-
ing specificity. “Putting it in writing” remains important but does
not substitute for the discussion.
• They emphasize appointment of a health care agent1; encourage
adequate preparation of that agent for future decision making; and
support discussions of care choices among individuals, the agent,
and the primary clinician.
• They respect and accommodate the different cultural, ethnic, and
spiritual values of the diverse U.S. population.
A measure of control over the final phase of life appears achievable

in most situations today if patients, families, and clinicians have these es-
sential conversations. The best experiences occur when there are reliable
systems for eliciting, recording, and using information about patients’
preferences; when clinicians are trained to carry out these tasks effectively
and are properly compensated for doing so; and when, regardless of care
setting—home, nursing home, hospital, intensive care, rehabilitation facil-
ity, or under hospice care—patients’ wishes are known and respected to the
extent possible. Instead, however, there are strong professional, cultural,
and financial incentives for continuing treatment beyond the point where
it benefits patients.
This chapter examines the current state of advance care planning—
who participates and the ways in which it affects clinical care, patient and
caregiver outcomes, and the costs of care. It then describes the way age,
disability, and personal background may affect attitudes about and experi-
ences with advance care planning. Next, fundamental to the advance care
planning process is clear empathetic communication between clinicians
and patients, which can lead to shared decision making. Accordingly, the
chapter explores the elements of good communication in this process. This
is followed by discussion of several model advance care planning programs
1 These individuals are variously called surrogates, proxies, or agents. A health care agent is
an individual designated in an advance directive, while a health care proxy is any designated
substitute decision maker, including a guardian or conservator. A surrogate is a person who,
by default, becomes the decision maker for an individual who has no appointed proxy (HHS,
2008). In this report, the term “health care agent” is generally used. The form that names the
agent is often called a durable power of attorney for health care.

CLINICIAN-PATIENT COMMUNICATION AND ADVANCE CARE PLANNING 119
and the committee’s proposed life cycle model for advance care planning.
The chapter ends by outlining research needs and presenting the commit-
tee’s findings, conclusions, and recommendations on alignment of care with
patient preferences.
BACKGROUND
Americans express strong views when asked about the kinds of care
they want when they are seriously ill and approaching death. As noted in
earlier chapters, in general they prefer to die at home, and they want to
remain in charge of decisions about their care (CHCF, 2012; Fischer et al.,
2013; Gruneir et al., 2007; Tang, 2003). However, evidence suggests these
wishes are not likely to be fulfilled:
• In 2009, one in four adults aged 65 and older died in an acute care
hospital, 28 percent died in a nursing home, and one in three died
at home (Teno et al., 2013). Among all decedents, 30 percent were
in an intensive care unit (ICU) in the month preceding death.
• An estimated 40 percent of all adult medical inpatients are inca-
pable of making their own treatment decisions because of uncon-
sciousness, cognitive impairment, or inability to express a choice
(Raymont et al., 2004).
• Among nursing home residents, 44-69 percent cannot make their
own medical decisions (Kim et al., 2002).
• Fully 70 percent of decedents participating in the Health and Re-
tirement Study who were aged 60 and older at death and who faced
treatment decisions in the final days of their lives were incapable of
participating in these decisions (Silveira et al., 2010).
• The vast majority of critically ill patients cannot participate directly
in decision making (Nelson et al., 2006), nor are they likely even
to have met the intensivist physicians caring for them (Gay et al.,
2009).
The Institute of Medicine (IOM) report Approaching Death (IOM,

1997) reviews many of the then-recognized shortcomings of the advance
directive approach:
• patients’ and families’ lack of awareness of or interest in complet-

ing forms;
• clinicians’ unwillingness to adhere to patients’ wishes;
• difficulties in having meaningful family conversations about pa-
tients’ wishes and in making choices in the face of prognostic
uncertainty;

• lack of institutional support and processes for completing advance

directives; and
• cultural and legal factors, including resistance within the medical
culture as well as differences in families’ cultural traditions.
A study of public views conducted around the same time that report was
published reinforced these concerns (American Health Decisions, 1997).
Respondents noted that there are many reasons why they or their loved
ones avoid talking about death, including that it is upsetting or depressing
or is an issue to be addressed in the future. They also felt that the medical
system’s emphasis on achieving cure and sustaining life “even when death is
inevitable—can ironically result in treatments that prolong life ‘unnaturally’
and cause unnecessary suffering.”
Some of the problems identified 17 years ago have since diminished or
been remedied, while others have become more acutely apparent. The mis-
characterization of advance care planning as “death panels” during debates
about the Affordable Care Act (see Chapter 6) suggests that misunderstand-
ings about the process have persisted and, indeed, intensified.
The remainder of this section reviews the four-decade history of ad-
vance directives/advance care planning. Before proceeding, however, a note
about these two terms is in order. Approaching Death draws a useful dis-
tinction between advance directives (documents written or completed by
patients) and the broader concept of advance care planning. As Box 3-1
describes, advance care planning is a process for setting goals and plans
with respect to medical treatments and other clinical considerations. It
brings together patients, families, and clinicians “to develop a coherent care
plan that meets the patients’ goals, values, and preferences” (Walling et al.,
2008, p. 3896). It can begin at any point in a person’s life, regardless of
his or her current health state; is revisited periodically; and becomes more
specific as changing health status warrants.
As anticipated in Approaching Death, the current emphasis has evolved
considerably from a debate about specific legal forms and living wills to
acceptance of the more general concept of advance care planning (Sabatino,
2010). Because much of the large body of research in this area focuses on
advance directives (a tangible product) rather than the broader and more
difficult to document topic of advance care planning, this chapter likewise
talks about directives. It should be noted, however, that while the com-
mittee consistently found shortcomings in advance directives, it is more
optimistic about the potential benefits of advance care planning.
The following historical review draws on a report prepared by the U.S.
Department of Health and Human Services (HHS, 2008) titled Advance
Directives and Advance Care Planning. That report resulted from a request

by Congress in 2006 that HHS conduct a study of advance directives and

how to promote their use.
For decades, people with advanced serious illnesses relied almost un-
questioningly on their physicians’ judgment regarding treatment matters,
trusting that physicians would act in their patients’ best interests as a matter
of professional and personal ethics. As technology and medicine advanced,
increasingly intensive interventions could keep people alive with breathing
tubes and feeding tubes and high doses of powerful drugs. In many cases,
people recovered and resumed their former lives, but in other cases, the lives
these technologies sustained were not optimal.
Around the time public awareness of the darker potential of “heroic
measures” was growing, so was the consumer rights movement. In that
context, Americans sought to assert their right to control whether life-
sustaining treatments were used in their care, especially when the outcome
was doubtful. Among the earliest attempts to codify this new right was
the California Natural Death Act of 19762 (Towers, 1978), which made
the written advance directives of terminally ill patients binding on their
physicians. The California law was quickly followed by similar actions
in other states and upheld in state and federal courts. In 1990, Congress
passed the Patient Self-Determination Act,3 which required all health care
facilities receiving reimbursement from Medicare or Medicaid “to ask pa-
tients whether they have advance directives, to provide information about
advance directives, and to incorporate advance directives into the medical
record” (HHS, 2008, p. x), setting the stage for subsequent emphasis on
this type of form.
Public concern about advance directives increased in the wake of sev-
eral well-publicized legal cases that centered on the right to withdraw treat-
ment from people lacking decision-making capacity. At the same time, new
state laws outlined do-not-resuscitate protocols—medical orders signed by
a clinician—for use outside as well as within the hospital. Building on this
concept of having medical orders in place to guide treatment, a new model
was pioneered in Oregon for recording a broader range of preferences.
These Physician Orders for Life-Sustaining Treatment (POLST), now being
approved in an increasing number of states (see Box 3-1 and Annex 3-2)
and described later in this chapter, are actionable in and out of the hospital,
even in emergency situations.
Regional and national efforts to encourage advance care planning have
2 Natural Death Act, Ch. 1439, 1976 Cal. Stat. 6478 (enacting Cal. Health & Safety Code
§ 7188 (repealed 2000)).
3 The Patient Self-Determination Act, Omnibus Budget Reconciliation Act of 1990, Public
Law 101-508 §§ 4206 and 4751, 104 Stat. 1388-155 and 1388-204 (1991).

BOX 3-1
Terms Related to Advance Care Planning
Advance care planning entails a number of different kinds of instruments. In

this report, the committee has tried to maintain the distinctions among them, but
the medical literature reviewed does not always do so, and there is confusion even
in the field. Terms appearing in this report with respect to advance care planning
are defined as follows, with the understanding that in discussing particular studies,
the committee uses the terms employed by their authors.
Advance care planning refers to the whole process of discussion of end-of-

life care, clarification of related values and goals, and embodiment of preferences
through written documents and medical orders. This process can start at any
time and be revisited periodically, but it becomes more focused as health status
changes. Ideally, these conversations (1) occur with a person’s health care agent
and primary clinician, along with other members of the clinical team; (2) are re-
corded and updated as needed; and (3) allow for flexible decision making in the
context of the patient’s current medical situation.
Advance directive refers to several types of patient-initiated documents,

especially living wills and documents that name a health care agent. People can
complete these forms at any time and in any state of health that allows them to
do so.
• Living will—a written (or video) statement about the kinds of medical care
a person does or does not want under certain specific conditions (often
“terminal illness”) if no longer able to express those wishes.
• Durable power of attorney for health care—identifies the person (the
health care agent) who should make medical decisions in case of the
patient’s incapacity.
Medical orders are created with and signed by a health professional, usu-
ally a physician (in some states, a nurse practitioner or physician assistant), for
someone who is seriously ill. Because they are actual doctor’s orders, other health
professionals, including emergency personnel, are required to follow them.
evolved. Community Conversations on Compassionate Care (CCCC),4 op-

erating in Upstate New York, was launched with a press conference of spiri-
tual leaders in Rochester, New York, in 2002 to encourage everyone aged
18 and older to start early advance care planning discussions. The Center
for Practical Bioethics works extensively in the Midwest and throughout the
4 See https://www.compassionandsupport.org/index.php/for_patients_families/advance_
care_planning/community_conversations (accessed December 16, 2014).

• P hysician Orders for Life-Sustaining Treatment (POLST)a—physician or-

ders covering a range of topics likely to emerge in care of a patient near
the end of life, an innovation that began in Oregon in the early 1990s,
gradually spread to a few states, and is increasingly being adopted na-
tionwide. The orders cross care settings and are honored in the commu-
nity in an emergency. As of December 2013, the POLST Paradigm Task
Force had endorsed the POLST programs of 16 states,b and another 12
states were developing POLST implementation plans (National POLST,
2012f).
• Do-not-resuscitate,c do-not-intubate, do-not-hospitalize orders—medical
orders covering specific treatments that are written in a health care facil-
ity, but do not cross care settings and are not necessarily honored in the
community. An out-of-hospital do-not-resuscitate is a do-not-resuscitate
medical order that pertains when a patient is outside of a health care
facility setting (for example, a hospital or nursing home), and is intended
to ensure that a patient will not be resuscitated against his or her wishes
by emergency medical personnel.
aThe names of similar forms in different states vary. They include MOLST (Medical Orders
for Life-Sustaining Treatment), MOST (Medical Orders for Scope of Treatment), POST (Physi-
cian Orders for Scope of Treatment), COLST (Clinical Orders for Life-Sustaining Treatment),
SMOST or SPOST (Summary of Physician Orders for Scope of Treatment), and TPOPP
(Transportable Physician Order for Patient Preference). The approach is referred to as the
POLST paradigm, and the state organizations or coalitions that oversee the implementation
of these medical order programs are referred to as POLST paradigm programs. Program
names vary among the states overseeing these forms as well. This chapter uses POLST to
apply to all these variations unless the text is referring to a specific program with a different
name. See also http://www.polst.org.
bCalifornia, Colorado, Georgia, Hawaii, Idaho, Louisiana, Montana, New York, North Caro-
lina, Oregon, Pennsylvania, Tennessee, Utah, Washington, West Virginia, and Wisconsin
(Wisconsin has been endorsed only regionally).
cBecause of the high likelihood that resuscitation near death will be unsuccessful and will
only cause injury and distress, the term “do not attempt resuscitation” is also used. It has been
suggested that “allow natural death” may be a less threatening term than “do-not-resuscitate”
(Venneman et al., 2008).
United States to effectively engage various population groups through reli-

gious, veterans, and other organizations with which they are connected and
makes advance directives and related resources available through its Caring
Conversations® initiative.5 Nationally, the American Bar Association Com-
mission on Law and Aging6 has produced a comprehensive “Consumer’s
5 See https://www.practicalbioethics.org/resources/caring-conversations (accessed December
16, 2014).
6 See http://www.americanbar.org/groups/law_aging.html (accessed December 16, 2014).

Toolkit for Health Care Advance Planning” covering important issues such
as selecting a health care agent and weighing odds of survival, as well as
state-specific advance care planning information (American Bar Associa-
tion, 2005). National Healthcare Decisions Day7 has been held on or near
April 16 since 2008. This 50-state public awareness campaign is designed
to motivate people to select a health care agent and prepare a living will,
to advise them where to obtain these documents, and to link them to re-
sources that can help in having difficult conversations. More recently, The
Conversation Project8 was launched by author Ellen Goodman in 2010
as a grassroots public campaign designed to change and increase the con-
versation around end-of-life care long before a medical crisis occurs (see
Chapter 6 for more detail on these and other initiatives).
Medicare covers a one-time initial preventive physical examination (the
Welcome to Medicare Preventive Visit) that includes end-of-life planning as
a required service for Medicare beneficiaries who desire it (CMS, 2012a).
Although this is a one-time service for which the physician is paid, it is sel-
dom used. Of the millions of beneficiaries newly enrolled in 2011, Medicare
paid for preventive visits for only approximately 240,000 (CMS, 2012b);
the number who chose to receive the advance care planning information is
unknown, but was undoubtedly smaller.
At present, all 50 U.S. states and the District of Columbia have laws
supporting advance directives and the appointment of a health care agent
(through what is often called a durable power of attorney for health care;
see Box 3-1) (Gillick, 2010). An examination of policies regarding advance
directives in a dozen large nations around the world9 found that “the U.S.
stands alone in terms of attention paid to advance directives, perhaps due
to the emphasis on individual rights and [a] highly litigant system” (Blank,
2011, p. 210). This chapter examines what the U.S. effort in this area over
the past 40 years has accomplished. (For a discussion of the 2009 contro-
versy over death panels, see Chapter 6.)
THE CURRENT STATE OF ADVANCE CARE

PLANNING AND WHAT IT ACHIEVES
The ethical principle of autonomy underlies much of the thinking about
advance care planning in the United States. But the principle of autonomy—
particularly with a growing segment of the population that highly values
7 Seehttp://www.nhdd.org/public-resources (accessed December 16, 2014).

8 Seehttp://theconversationproject.org (accessed December 16, 2014).
9 The other countries in this review were Brazil, China, Germany, India, Israel, Japan, Kenya,
Netherlands, Taiwan, Turkey, and the United Kingdom. Usage of advance directives is low in
other countries, even in those whose legal systems allow them (Blank, 2011).

other principles, such as family cohesion—is showing signs of stress. Trying

to determine in advance how one might want to be treated in some hypo-
thetical future state is highly problematic (Loewenstein, 2005). Moreover,
according to the President’s Council on Bioethics (2005, p. xix), the process
gives “major ethical weight to personal autonomy and choice and personal
pride in self-sufficiency. But in so doing, it deliberately ignores the truth of
human interdependence and of our unavoidable need for human presence
and care.” And human presence and care are exactly what is needed by the
overwhelming proportion of people unable to make their own decisions
near the end of life.
Who Have Made Their Wishes Clear?

It’s always too early, until it’s too late.
—The Conversation Project, 2013
Most people have no documentation of their wishes regarding end-of-

life care, and few have talked with either their family or physician about
the subject (Clements, 2009). (See also the subsequent discussion of specific
population groups.) A 2013 national survey of nearly 2,100 Americans
aged 18 and older found that, while 90 percent believe having family con-
versations about wishes at the end of life is important, fewer than 30 per-
cent have done so (The Conversation Project, 2013).
I have served as a clinical chaplain in home health hospices and

as an independent health care ethics consultant and educator for
community-based organizations over the past 10 years. I have
learned over this time that it is extremely difficult for patients
and their families and caregivers to address end-of-life decisions.
Changes in the patient’s physical, mental, and spiritual states, the
news of the diagnosis, the impact on family, friends, caregivers, and
even the community at large, all contribute to the emotional stress
of decision making at this point in a person’s life.*
According to results of a 2012 survey (CHCF, 2012), the demographic

groups most likely to have had a discussion about end-of-life issues with a
loved one were those aged 65 and older, whites, people with higher educa-
tion and income, and those with one or more chronic conditions (see the

next section for discussion of differences among population groups). And

while 42 percent of respondents reported having such a discussion, only
23 percent had put their wishes in writing. More than three-quarters of
respondents said they would “definitely” or “probably” want to talk with
their doctor about their wishes for medical treatment toward the end of life
if they were seriously ill (47 and 32 percent, respectively); however, more
than 90 percent said a doctor had never asked them about those issues.
Among respondents aged 65 or older—the prime age group for having
chronic illnesses—84 percent had not been asked.
The older people are, the more likely they are to have participated in
some kind of advance care planning activity, as shown in Table 3-1. Other
factors that increase the likelihood of having an advance directive include
more education, having a close family member or confidant, recent hospital
admission, and having a close family member who died with pain or suffer-
ing (Carr and Khodyakof, 2007). Although marital status and number of
children did not affect the likelihood of having an advance directive in the
study by Carr and Khodyakof (2007), those with dependent children were
significantly less likely than those without dependent children to have any
advance care planning documents in place (Nilsson et al., 2009).
According to the HHS (2008) review, advance care planning is least
likely to take place in hospitals and intensive care settings, perhaps because
of patients’ physical, mental, or cognitive state or because the overriding
impulse is to provide what the authors call aggressive treatment. By con-
trast, nursing home residents are more likely than individuals in other care
settings to complete advance directives.
Why People Do Not Participate in Advance Care Planning

Many factors contribute to whether people complete some sort of
advance directive form. For example, people who believe doctors, not
patients, should make decisions about health care and those who have a
greater fear of death are significantly less likely to complete a form (Carr
and Khodyakov, 2007). However, when people reluctant to complete ad-
vance directives hear the personal stories of others who have had to make
end-of-life decisions for a loved one without any guidance, the desire to
save their family from these painful experiences can become a prime moti-
vator for putting their own wishes in writing (Halpern, 2012a; Steinhauser
et al., 2000a).
The many and varied requirements embedded in state laws covering
advance directives also discourage their completion. Problems include poor
readability and lack of clarity in some state-mandated forms; restrictions
on who can serve as health care agents and limitations on their authority;
procedural requirements, including the need for witness signatures or no-

TABLE 3-1 Participation in Advance Care Planning Activities, U.S. Adults

National Council on Excellus BlueCross
Associated Press-National Aging (NCOA)-United BlueShield Upstate New
Opinion Research Center Healthcare-USA Today,b California HealthCare York,d 2013
(AP-NORC),a 2013 2013 Foundation (CHCF),c (working-age population)
(people 40+) (%) (people 60+) (%) 2012 (all ages) (%) (%)
Have an advance directive 47 54 23
Discussed care preferences 41 62 42 (higher among those
with a loved one 65 and older)
Designated a health care power 49 — 58
of attorney (or equivalent)
SOURCES:
aTompson et al., 2013: telephone survey conducted by the AP-NORC Center for Public Affairs Research from February 21 through March 27,
2013, among a nationally representative sample of 1,019 American adults aged 40 and older.
bNCOA et al., 2013: telephone survey conducted by Penn Schoen Berland from April 4 through May 3, 2013, among a national sample of adults,
including 1,007 respondents aged 60 or older, and an oversample of low-income adults aged 60 and older, including those with three or more chronic
health conditions and those living in Birmingham (Alabama), Indianapolis (Indiana), Los Angeles (California), Orlando (Florida), and San Antonio
(Texas).
cCHCF, 2012: statewide survey conducted by Lake Research Partners from October 26 through November 3, 2011, among a representative sample
of 1,669 Californians aged 18 and older, including 393 respondents who had lost a loved one in the previous 12 months.
dPersonal communication, P. Bomba, Community Conversations on Compassionate Care and employer groups, March 1, 2014. Upstate New
York data were collected as part of a serial data collection on advance care planning among ~6,000 employees of Excellus BlueCross BlueShield and
other subsidiaries in Upstate New York since 2002. Results reflect a 2013 data update. (http://www.compassionandsupport.org/pdfs/research/2006_
Employee_Health_Care_Decisions_Survey_Results_Report.pb.092406.FINAL.pdf [accessed December 16, 2014]).

127
tarization; inadequate reciprocity across states; and inadequate reflection

of different religious, cultural, and social characteristics of individuals and
families (Castillo et al., 2011).
According to Fried and colleagues (2010, p. 2329), advance care plan-
ning “may best be understood as a health behavior, for which individuals
have highly varied motivation, barriers and facilitators, and self-efficacy
regarding their participation.” It may be efficacious to tailor information to
the readiness of individuals to participate in specific advance care planning
activities, an approach similar to how the stages of change model has been
used to help people adopt health-promoting behaviors, such as smoking
cessation (Orleans and Cassidy, 2011).10 A stages of change strategy for
advance care planning would approach people differently depending on
whether they needed help in completing an advance directive, naming a
health care agent, or communicating their preferences to their physician or
family members (Fried et al., 2010). Individuals vary greatly in their readi-
ness to participate in each of these activities.
A 2012 California survey (CHCF, 2012) asked adults (all ages) whether
they had spoken with a loved one about their wishes for end-of-life medical
treatment. Among those who had not, the most important reasons given
were
• too many other things to worry about right now (41 percent);
• don’t want to think about death or dying (26 percent), cited by 38
percent of Latinos and 26 percent of Asians and Pacific Islanders,
but only 15 percent of African Americans and of non-Latino
whites; and
• family member did not want to discuss it (13 percent).
Another reported reason patients (versus the public) do not participate

in advance care planning is that they “would rather concentrate on stay-
ing alive than talk about death” (Ganti et al., 2007; Knauft et al., 2005,
p. 2190).
Reluctance to engage in advance care planning sometimes originates
in patients’ sense that the initiative to do so should come from clinicians—
hence “the importance of clinicians bringing up advance care planning
with their patients who may be fearful of discussing the topic with family
or be waiting for some one else to initiate discussion” (Phipps et al., 2003,
10 In the Orleans and Cassidy (2011) review, the stages of change are specified as precontem-
plation (not thinking about participating in the activity yet), contemplation (thinking about
participating in the next 6 months), preparation (planning to complete the activity in the
next 30 days), action (participated in the activity within the past 6 months), and maintenance
(participated in the activity more than 6 months ago).

p. 553). Finally, people often do not realize they have a terminal disease,
what that disease is, or that they are dying (Gardiner et al., 2009).
My mother died in January 2012. She was in a nursing home for

the last 7 weeks of her life and in a hospital for 2 weeks prior to
that. At no time did a doctor or nurse say to me, “I’m sorry, but
there is nothing we can do for your mother—let’s plan for her to
have an easy death.*
The Choice of a Health Care Agent

With respect to the choice of a health care agent, the following general
points apply:
• Married people overwhelmingly choose their spouse (Carr and

Khodyakov, 2007). Spousal proxies have been found to be more
accurate than adult children in their assessment of an elder’s wishes
(Parks et al., 2011; but see the quote below for a counterexample),
with wives being more accurate than husbands (Zettel-Watson
et al., 2008).
• Unmarried and widowed parents choose a child and rarely some
other relative, friend, or professional, although in families with
only one or two children, a child is less likely to be selected (Carr
and Khodyakov, 2007).
• People without a spouse or children choose another relative, such
as a sister or a brother or perhaps a friend or a colleague (Carr and
Khodyakov, 2007).
The above pattern is not universal, however, and “individuals will in-
novate to meet their own needs and the presumed needs of their loved ones”
(Carr and Khodyakov, 2007, p. 188)—for example, when they believe deci-
sion making would be too stressful. Being a health care agent is a difficult
job and an extra burden on an already stressed spouse, partner, parent, or
child. Close family members may be unable to separate their feelings from
the needs of the situation, be unwilling to face the prognosis or talk through
the patient’s wishes, or be unable to handle conflicts that arise among fam-
ily members or with clinical staff. Family members who can answer yes to
the following questions are less likely to struggle with the agent role: Do

My mother was 99 when she fell, fractured her hip, had a mild
heart attack, and became unconscious. EMTs [emergency medical
technicians] took her to the hospital. The surgeon there said she
needed a hip operation to relieve the pain. I knew Mom would not
want that. For several years, she had told me and my stepfather
that she “was ready to go” and didn’t care about living to 100. Her
quality of life had clearly deteriorated.
When I saw Mom in the ICU, she was surrounded by beeping

monitors and tubes, with nurses running in and out. Her head
thrashed from side to side, and she couldn’t recognize anyone. She
kept repeating, “I already died once, why am I still here?” and “Let
me go, let me go.” It was heartbreaking.
Some years earlier, Mom told me she had assigned me her health
care durable power of attorney. I never asked to see the documents,
because I thought it would be “impolite.” The day of Mom’s crisis,
I found out that my stepfather, who was devastated and grieving,
had health care power of attorney for Mom, and I was merely the
backup. Shockingly, he agreed to the operation, which was sched-
uled to begin in 3 hours, and I had no legal power to stop it.
I had a hard talk with my stepfather and reminded him of Mom’s

wishes. An hour before the operation, he agreed to talk to a hospice
representative, who said Mom was eligible for hospice at their facil-
ity. Three hours later, Mom was in a quiet, machine-free hospice
room, on increased pain medication, looking much more tranquil,
with calm, relaxed breathing. She died 10 hours later, in that peace-
ful state. I know we did what she wanted.*
you have prior experience as someone’s health care agent, and have you had
prior conversations with the patient about treatment preferences? (Majesko
et al., 2012). Box 3-2 lists some of the key considerations in an individual’s
choice of a health care agent.
An obvious and important consideration is the availability of the agent.
In a survey of almost 300 physicians regarding their recent experiences with

BOX 3-2
What to Keep in Mind When Choosing a Health Care Agent
The person you select as an agent must:
• M
eet legal criteria (for example, be a competent adult and at least age
18 years)
• Be willing to speak on your behalf
• Be willing to act on your wishes
• Be able to separate his/her own feelings from yours
• Live close by or be willing to come
• Know you well
• Understand what is important to you
• Be willing to talk with you now about sensitive wishes
• Be willing to listen to your wishes
• Be able to work with those providing your care to carry out your wishes
• Be available in the future
• Be able to handle potential conflicts between your family, close friends
SOURCE: Compassion and Support, 2010, p. 7.
patient decision making, most (73 percent) reported having to make major

decisions for patients, for various reasons. One in five reported difficulty
contacting agents, and one in four reported never having talked to agents
personally (Torke et al., 2009).
Most states have established default systems for authorizing surrogates.
Thus, even if a proxy form is not signed or if the chosen health care agent is
not reasonably available, a priority list of people who can make decisions if
the patient cannot is generally in place. State laws vary, but such lists gener-
ally start with the immediate family. In some states, lists include domestic
partners or close friends or senior officials in religious organizations, and in
some, they include physicians, often in consultation with an ethics commit-
tee or other physician (in other states, physicians cannot take on this role).
To the extent possible, default surrogates are charged with making decisions
(substituted judgment) reflecting to the extent possible the patient’s likely
decisions, best interests, instructions if any, or personal values (American
Bar Association, 2009; Kohn and Blumenthal, 2008).11 If patients have not
thoroughly discussed their wishes, however, it is unlikely that surrogates,
11
Ostensibly, these laws provide the maximum feasible protection of the wishes of the
incapacitated person and “the fundamental right to make health care decisions for oneself”
(Kohn and Blumenthal, 2008, p. 9) (as expressed in the laws of Illinois, Louisiana, and Utah,
for example).

even family members, can accurately gauge what those preferences would
be despite believing to the contrary (Kohn and Blumenthal, 2008).
Although surrogacy laws meet most situations, they fall short, for
example, in serving families in which intergenerational and group decision
making are highly valued or cultural groups more likely to select a non-
family member as health care agent (Kohn and Blumenthal, 2008). Further,
the underlying presumption of health care proxy statutes is that people will
have a spouse, child, sibling, or close friend whom they can name as their
agent. Many people, especially among the elderly, have no such person.
While data on the number of such people are lacking, they may represent 3
to 4 percent of the nursing home population alone (Karp and Wood, 2003).
In many states, should they become unable to make or communicate their
own health care decisions, no one has the authority to make those decisions
unless a court deems them legally incompetent and appoints a guardian.
Because such guardians may be strangers with little or no evidence of the
patient’s prior wishes, there is no assurance their decisions will be what
the patient would have chosen. In the absence of clear guidance from the
patient and in light of the consequent uncertainty, the default decision often
is to treat the patient’s various conditions regardless of likely benefit.
Do Clinicians Follow Patients’ Previously Expressed Wishes?

Data on the impact of advance directives on the treatment received by
patients suggest that directives are not always followed. In one large study,
for example, 92 percent of people had recorded a preference for what the
authors call comfort-focused care in their living will, but this desire was
“poorly correlated with treatment delivered” (Kelley et al., 2011, p. 240).
In a study of advanced cancer patients, 13 percent received life-extending
treatment in the last week of life despite a stated preference for treatment
focused on relieving pain and discomfort (Mack et al., 2010b).
While the predominant conversation about advance care planning fo-
cuses on people who want to avoid intensive and nonbeneficial medical
interventions, the recent controversy over “death panels” (see Chapter 6)
makes clear that many Americans worry about being denied care, and
some clinicians believe patients may fear they will give up on care too soon
(Gutierrez, 2012). Yet while some people, at least in the abstract, do want
every treatment the health system can offer (Pew Research Center, 2013;
Veysman, 2010), a study of people aged 60 and older at the time of death
revealed that fewer than 2 percent (10 subjects) of those with a living will
wanted “all care possible” (Silveira et al., 2010). In another study, involving
people with advanced cancer who were aware they were terminally ill, just
17 percent wanted supposed life-extending treatment (Mack et al., 2010b).
If patients with serious advanced illness receive less intensive treat-

ment than desired, the difference may reflect a lack of treatment options.
For example, one study found more frequent mismatches between desire
for intensive treatment and services received for patients with cancer than
for those with congestive heart failure or chronic obstructive pulmonary
disease. The authors conclude that “it is probable that many [cancer]
patients reached a point in the course of their illness where treatment op-
tions were limited regardless of the patient’s preferences” (Cosgriff et al.,
2007, p. 1570).
Physician Concerns
Several studies have explored the extent to which physicians comply
with directives such as living wills and what factors may influence their
actions in this regard. One such study found that most primary care physi-
cians would honor a patient’s advance directive even if it were 5 years old
(80 percent) or even if the patient’s spouse requested continued resuscita-
tive care (74 percent).12 Fear of legal liability was a concern, including
for one-third and one-half of respondents in these situations, respectively
(Burkle et al., 2012), and for a large percentage of emergency physicians
(58 percent) (Marco et al., 2009). In general, physicians believe their liabil-
ity risk is greater if they, mistakenly, do not attempt resuscitation than if
they provide it against patient wishes (Burkle et al., 2012). As in so many
other instances, the default is to treat.
Burkle and colleagues (2012) found that almost 60 percent of the
physicians in their study were not likely to honor the wishes of patients
whose advance directives indicated they wanted to “pass away in peace”
if such patients were in a sudden acute situation (ventricular fibrillation)
and likely to be treated successfully (including 45 percent who considered
it unlikely that they would honor the advance directive and 14 percent who
were unsure). The fact that the remainder would honor patients’ directives
in such a situation suggests that, despite several decades of experience,
some 40 percent of physicians remain confused about the purpose and
interpretation of advance directives. This is true even among emergency
medical personnel and hospital residents likely to be called upon under
urgent circumstances. Several small studies have shown that some clinicians
assume a living will’s instructions apply even if the patient does not have
the requisite terminal condition or persistent unconsciousness (Mirarchi et
al., 2008, 2009, 2012).
12 By contrast, a survey involving more than 10,000 physicians found that more than half
(55 percent) would not consider halting life-sustaining therapy because the family demanded
it; for 29 percent, that decision would depend on circumstances (Kane, 2010).

System/Logistical Challenges
Patients’ advance care preferences cannot be followed if the record of
those preferences cannot be found and/or is not up to date. People’s prefer-
ences change over time and with hospitalization (Chochinov et al., 1999;
Ditto et al., 2006; Fried et al., 2007), which may partially explain why the
actual preferences of patients differ from what is documented in their medi-
cal record (Volandes et al., 2012a,b). Yung and colleagues (2010) found
that advance directives for 53 percent of patients (aged 75 and older and in
fragile health) who said they gave them to their health care provider were
not in their medical record, nor was there any indication of their existence.
This percentage was much higher—83 percent—for a separate cohort of
patients aged 65 and older and also in fragile health. For patients who said
they had not provided an advance directive to their provider but had com-
municated information about their health care agent, that person’s name
and contact information was in the medical record zero percent of the time
for patients under age 75 and 16 percent of the time for those aged 75 and
older.
Even if the clinician remembers the conversation and the patient’s
wishes, recording those preferences is critical “in a health-care system that
relies on teams of providers in different settings” (Yung et al., 2010, p. 866)
and in which frequent care transitions occur near the end of life (Lakin et
al., 2013). Researchers attempting to track the continuity of advance care
planning documentation across care settings found that when patients
transitioned from provider office to hospital or emergency department, the
likelihood that advance care planning documentation would be available
and/or in concordance “was no greater than chance” (Yung et al., 2010,
p. 865). As discussed in detail in the section on electronic health records
later in this chapter, data standards for electronic health records that help
promote document portability, availability, and agreement do not require
robust documentation of advance care planning.
The implementation of advance directives for pediatric patients entails
several particular barriers. For example, emergency department personnel
are uncomfortable honoring them, schools may not accept them, and par-
ents seeking to honor their children’s wishes encounter negative reactions
from others (Lotz et al., 2013).
Conflicting Views
There are two schools of thought regarding how binding advance di-
rective instructions should be: one is that they should be followed strictly,
and the other holds that “it is simply not possible for people to anticipate
[their future] decisions about life-preserving treatment with any degree of

accuracy” (Bomba et al., 2012; Sahm et al., 2005, p. 297). Further, prior
instructions may not fit the current situation or reflect advances in treat-
ment options. These problems, it is said, are compounded by the lack of
clarity in the wording of many advance planning documents. The question
is not just what they mean in some abstract sense but what they meant to
the person who completed them, who now can no longer amplify or explain
and whose mind may have changed with time and altered circumstances.
A German study found that nonclinicians had a much more flexible
approach than clinical personnel to interpreting advance directives (Sahm
et al., 2005). The authors conclude that the uncertainties around decision
making are a strong argument for employing sound clinical judgment in the
final phases of a patient’s life. They suggest that a preferable alternative to
rigid advance directives is comprehensive advance care planning, which can
take into account a broader array of issues and social relationships and can
include spiritual and cultural matters, as well as practical concerns.
Taking this argument a step further are those who recommend that
advance care planning’s main objective should not be to make advance
treatment decisions, but “to prepare patients and surrogates to work with
their clinicians to make the best possible in-the-moment medical decisions”
(Sudore and Fried, 2010, p. 259). It is suggested that health care agents
need this flexibility because they will have to live with the decisions they
make (Vig et al., 2006). In one study, the majority of patients (55 percent)
gave their surrogates leeway to consider the benefits and burdens of treat-
ment and “specify processes rather than outcomes in their preferences for
end-of-life care” (Shapiro, 2012, p. 226).
Conflicts in the implementation of advance directives occur in certain
typical situations: when the directive requests a type or intensity of care
that, at the time of the event, is judged by clinicians or family not to be in
the patient’s best interest, and when the health care agent disagrees with the
patient’s request. State laws differ regarding the circumstances under which
families can override advance directives. In addition, many hospitals have
nonbeneficial care policies and/or refer such cases to the ethics committee
for resolution.
Does Advance Care Planning Affect Patient and Caregiver Outcomes?

Advance care planning influences the quality of care and patient and
family satisfaction in several ways:
• People who participate in advance care planning generally but not

always choose treatment focused on relieving pain and discomfort
over life-extending treatments and enroll in hospice earlier, thereby

avoiding many physical and psychological stresses (Mack et al.,

2010b; Wright et al., 2008).
• Advance care planning gives patients and families the opportunity
to start preparing mentally and emotionally for death (Martin et
al., 1999; Steinhauser et al., 2000a).
• Advance care planning supports several of the primary concerns
of people with life-limiting illnesses: involvement, clear communi-
cation, shared decision making (Steinhauser et al., 2000b), and a
sense of control (Edwards et al., 2010; Martin et al., 1999).
• By stating the kind of care they want in advance, patients may al-
leviate the burden of decision making on family members (Billings,
2012; Detering et al., 2010).
• Among children and youth, participation in systematic advance
care planning programs may enhance positive emotions and facili-
tate communication, lead to treatment modifications (for example,
withdrawal of ventilator support and addition of opioid analgesia),
and support having death occur at home (Lotz et al., 2013).
Comparing the survival of patients with and without advance care

planning13 before stem cell transplant therapy revealed that those with-
out such documents were significantly more likely to die within 1 year of
transplant than those who had them (Ganti et al., 2007). This finding led
researchers to conclude that the discussions were not deleterious to patients
and that those “who did not engage in [advance care planning] were the
most likely to face a situation in which [it] might have helped” (p. 5647).
Another study found that discussions of do-not-resuscitate orders did not
result in worse psychosocial functioning, including greater anxiety or de-
pression, among either patients or caregivers (Stein et al., 2013).
The impact of advance care planning for the elderly has been studied,
and the results parallel those found in other population groups. Elders
do engage in such discussions, most often with family present, if given an
opportunity to reflect on their goals, values, and beliefs; to articulate and
document their treatment preferences; and to choose a health care agent.
Those who have these discussions are almost three times as likely to have
their end-of-life wishes both known and followed, and their family mem-
bers suffer significantly less stress, anxiety, and depression after their loved
one’s death (Detering et al., 2010).14
13 Advance care planning is defined in this study as having one or more of the following:
a living will, a power of attorney for health care, or life support instructions (Ganti et al.,
2007). No distinction is drawn between completion of such a document with and without
comprehensive discussion with the physician.
14 Of those receiving the advance care planning intervention, 10 percent of patients’ wishes
were unknown; 3 percent of patients’ wishes were known but not followed.

Research related specifically to advance care planning among people

with heart failure, chronic obstructive pulmonary disease, cancer, and de-
mentia, discussed in Annex 3-1 at the end of this chapter, provides many
insights into the role of advance care planning in several of the most com-
mon causes of death in the United States. It reveals that for each of these
conditions, high-quality palliative care, which includes the goal-setting
activities of advance care planning, would be an important parallel focus
of treatment, but in each case is not the current standard of care.
What Are the Effects of Advance Care Planning

on Health Care Agents and Families?
Health care agents and surrogates (including those who are family
members) are critically important for the 44 to 69 percent of nursing home
residents with decisional impairment (Kim et al., 2002). Agents may also
make decisions for large numbers of geriatric patients who retain decision-
making capacity yet defer decisions to family members (Vig et al., 2007).
Even when patients’ preferences are clear to health care agents—which
too often they are not (Fried and O’Leary, 2008)—the decisions these
agents must make do not come without difficulty (Schenker et al., 2012).
Moreover, “surrogates are not perfect ambassadors of patient preferences”
(Vig et al., 2006, p. 1688). Often, caregivers (usually family members)
want life-sustaining measures used even when patients do not (Phipps et
al., 2003). At times, health care agents may be required to make a decision
at odds with patients’ expressed wishes (to die at home, for example) when
clinical circumstances evolve differently than anticipated.
Health care agents’ decisions inevitably are colored by their own wishes
and care preferences, feelings of overwhelming responsibility, religious be-
liefs, and the desire for family consensus (Fritch et al., 2013; Schenker et al.,
2012). Interviews with health care agents have revealed the broad range of
bases on which they make their decisions: conversations with patients, the
agents’ own beliefs and preferences, input from others close to the family,
shared values and life experiences, and written documents (Vig et al., 2006).
When health care agents cannot meet patients’ requests, they feel regret
or guilt that may lead to complicated grief and bereavement (Fried and
O’Leary, 2008; Topf et al., 2013).15 Family decision making can have a sig-
nificant and sometimes long-term negative psychological impact, including
stress, guilt, doubt, grief, and even increased thoughts of suicide, especially
among spouses (Abbott et al., 2013; Wendler and Rid, 2011). Wendler and
15
Complicated grief is long-lasting and shares elements of both depression and posttrau-
matic stress disorder. For a full description, see http://www.health.harvard.edu/fhg/updates/
Complicated-grief.shtml (accessed December 16, 2014).

TABLE 3-2 Stresses on Health Care Agents and Examples of Potential

Remedies
Stressor Potential Remedy
Uncertainty about patient preferences More thorough advance care planning
Uncertainty about prognosis Conversation about key decision points
Discomfort with the hospital environment Familiarizing family members with the
hospital; explaining why certain procedures
are followed, who directs various aspects of
care, and whom to ask for what
Discomfort with the logistics of making Ensuring that information is conveyed in a
decisions thorough and unhurried manner; use of a
shared decision-making model
Poor communication by clinicians Targeted communication training for clinical
staff; limiting the number of clinicians with
whom the health care agent must deal
Uncertainty and guilt Providing support and positive reinforcement
for health care agent decisions and adequate
subsequent counseling
SOURCES: Majesko et al., 2012; Vig et al., 2007; Wendler and Rid, 2011.
Rid (2011) reviewed the literature on health care agent stressors and identi-
fied a number of problems commonly reported by agents, some of which
appear to be at least partly remediable (see Table 3-2).
Risk factors for complicated grief among bereaved caregivers include
fewer years of education, younger age of the deceased, and lower satisfac-
tion with social support (Allen et al., 2013). The care provided by hospices
may lead to positive health outcomes, including survival, among the be-
reaved and may help some people avoid long-term depression and other
consequences of complicated grief (Christakis and Iwashyna, 2003). A
hospital-based family support specialist who maintains connections with
health care agents can provide emotional, communication, decision, and
anticipatory grief support (White et al., 2012).
Negative mental health effects among family members of ICU patients
in one study were markedly higher (reaching 82 percent) if family members
believed the information received from the staff to be too rushed, unclear,
or incomplete or if they shared in end-of-life decision making (Azoulay et
al., 2005). Having an advance directive reduces bereaved family members’
concerns about physician communication or lack of information (Teno et
al., 2007). Health care agents may also be helped by previous decision-

making experiences; effective coping strategies; supportive life circum-

stances; a belief that their decisions will result in a “good” outcome; and
having a clinician who is available and who provides frank information,
recommendations, and respect (Back et al., 2010; Vig et al., 2007).
An approach to working with families that supports both emotional
reasoning and medical requirements has been suggested, allowing patients,
families, and physicians to “expand their medical focus to include disease-
modifying and symptomatic treatments and attend to underlying psycho-
logical, spiritual, and existential issues” (Back et al., 2003, p. 439). Health
care agents who have been well prepared, who have the support of other
family members and the clinical team, and who have been given some rea-
sonable leeway in carrying out their role will be able to do so with fewer
long-lasting negative effects. Effective preparation has been shown to be
best achieved when the patient-agent discussion is guided by a trained
facilitator (or other knowledgeable person), when there is an opportunity
to discuss concerns, and when patient misconceptions regarding the likely
outcomes of treatment are corrected (Fried et al., 2002; Jezewski et al.,
2007; Kirchhoff et al., 2010). Grief and bereavement are a natural corollary
to losing a loved one; unrelieved stress-related problems are not.
Does Advance Care Planning Affect Health Care Costs?

The purpose of comprehensive advance care planning is to ensure
that people receive the care they desire and minimize the burden on their
families. In doing so, an additional benefit may be lower health care costs.
This is useful to know given that proposals to expand and improve advance
care planning programs will almost certainly be met with the argument that
they are “too expensive.” The evidence presented in this section suggests
just the contrary.
Several large studies have attempted to assess the impact of advance
care planning on health care costs. One found no association between
advance care planning (either reported completion of an advance directive
or discussion of care preferences) and Medicare expenditures in the last
6 months of life (Kelley et al., 2011). Another study compared costs for
people who had “treatment-limiting advance directives” and those who did
not (Nicholas et al., 2011). People with such directives had lower rates of
life-sustaining treatment (34 percent versus 39 percent), were less likely to
die in the hospital (37 percent versus 43 percent), and were more likely to
use hospice (40 percent versus 26 percent). All these care differences were
statistically significant. But again, median fee-for-service Medicare spend-
ing in the last 6 months of life was not significantly different for the two
groups ($21,008 for the treatment-limiting group versus $21,614 for the
group without a treatment-limiting advance directive).

Another analysis of this study compares spending for decedents in

low-spending regions of the country (who were significantly more likely to
have a treatment-limiting advance directive) with spending for decedents in
higher-spending regions (Nicholas et al., 2011). Although the two groups
had similar cause-of-death and comorbidity patterns, the costs of care in
the last 6 months were substantially different. The largest differential was
between spending for people with a treatment-limiting advance directive in
low-spending regions ($14,153) and spending for those without a directive
in high-spending regions ($26,616). These data further suggest that having
an advance directive made no statistically significant difference in predicted
spending in the low- and medium-spending regions; in the high-spending
regions, however, a treatment-limiting advance directive might save $5,585
per death, primarily as a result of lower hospital utilization rates. Thus, this
study demonstrates “a statistically and economically significant relationship
between advance directives and regional practice patterns” (Nicholas et al.,
2011, p. 1452).
A large portion of hospital costs at the end of life is associated with
ICU care. One study found that among Americans who died, the cost of a
terminal hospitalization with an ICU stay was an estimated $38,000, com-
pared with $13,000 if ICU care was not included (both of these figures are
in 2010 dollars) (Zilberberg and Shorr, 2012).
Assessing patients’ end-of-life preferences and providing care congruent
with their values, along with coordinating the care provided by different
clinicians and institutions, produces important improvements in clinical
care. In one such model program, the Sutter Health Advanced Illness Man-
agement program, this combination of approaches appeared to save about
$2,000 per month per patient in direct care costs (Meyer, 2011).
Lower rates of hospital deaths and higher rates of hospice enrollment
occur when the care team pays attention to more than patients’ physical
condition—specifically, to their religious and spiritual concerns (Flannelly
et al., 2012). Such whole-person care “may assist patients in recognizing
less aggressive [end-of-life] care options that remain consistent with their
religious/spiritual beliefs” (Balboni et al., 2011, p. 5389). In this study, the
estimated care costs in the last week of life for cancer patients who reported
high spiritual support were $2,441 less than costs for those who reported
less spiritual support.16
Finally, in a cohort of 603 advanced cancer patients, 188 reported dis-
cussing their end-of-life care preferences with their physicians (Zhang et al.,
2009). Costs of care in the last week of life were 36 percent lower among
16 These findings were adjusted to take into account potential confounders such as advance
directives and advance care planning.

patients who had the care discussion, amounting to savings of $1,041 per
patient in 2008 dollars.
ADVANCE CARE PLANNING AND TREATMENT

PREFERENCES AMONG SPECIFIC POPULATION GROUPS
This section describes what is known about advance care planning and
treatment preferences among people in specific groups described by age,
disability state, religious affiliation, ethnicity, and literacy level. An impor-
tant caveat is that all of these groups include individuals with a full range
of attitudes and preferences, and the generalities that may be derived from
population studies may not apply at all to a specific patient and family.
Chapter 1 of this report notes the importance of patient-centered care for
people nearing the end of life; the wide variation in preferences that exists
in any group reinforces the need for end-of-life care that approaches each
individual and family as unique.
Children and the Elderly
Children
The typical barriers to conducting advance care planning in adult
populations—reluctance to discuss dying, cultural norms that support
family-level decisions, clinician time constraints, unpredictable disease
trajectories, and insufficient clinician preparation to conduct such dis-
cussions—also are present when the patient is a child.17 In addition, the
process is made more difficult by concerns regarding the child’s cognitive
and emotional development and both the child’s and parents’ readiness to
participate in such conversations; the emotional burden on parents and
caregivers; differences in understanding of prognosis between clinician and
child/parent; unrealistic expectations among parents; and the need for a
three-way conversation and communication among parents, children, and
clinicians (Durall et al., 2012).
Nonetheless, advance care planning models suitable for children and
adolescents have been developed. Even suitable adult advance directives
have been used successfully with younger people. When combined with in-
depth counseling (such as Gundersen Health System’s Respecting Choices
model, discussed later in this chapter), they have greatly increased the
proportion of adolescent patients who give their families the leeway to “do
what is best at the time,” increased information available to the patient and
family and improved patient understanding about end-of-life decisions, and
17 The term “child” here encompasses adolescents.

I am a pediatrician, specializing in care of children living with HIV.

Discussions regarding end-of-life care of children are always dif-
ficult. Many family members (and health professionals) shy away
from the issue. Speaking directly with the child or adolescent is
both extremely important and extremely difficult. Spiritual care
is often neglected, as it is kept separate from medical discussions.
There is great need to treat the child as a child—a complex, multi-

faceted individual—and not as an impersonal medical case. Chil-
dren have much greater insight into their own conditions and
realities than they are given credit. The death of a child is and
should be heart-breaking. However, end-of-life care should not be
treated as a taboo subject, especially when speaking directly with
the child/adolescent. Successes in end-of-life care for children come
from strong, supportive relationships with health care providers,
counselors, spiritual leaders, and family members.*
increased patient and family agreement about decisions to limit treatment

(Lyon et al., 2009, 2013).
Five Wishes,18 an advance directive written in nontechnical language,
includes identification of a health care agent, as well as choices about
medical and nonmedical treatment and comfort. Wish 5—“what I want
my loved ones to know”—lets patients describe how they want to be re-
membered and in a group of adolescents and young adults, was deemed
the most helpful part of the document (Wiener et al., 2008). Five Wishes is
available in child and adolescent/young adult versions (Wiener et al., 2012).
Available guidelines for making end-of-life treatment decisions for pe-
diatric patients tend to be broad, and research has yet to fully establish
their usefulness in clinical settings (Hinds et al., 2010). Making decisions
that will not forestall the death of a terminally ill child and involving the
child in the decision that will end his or her life “are startling concepts,”
say Hinds and colleagues (2010, p. 1049). From these authors’ vantage
point of working in pediatric oncology, enabling a peaceful death is part
of providing care of the highest quality. The way these decisions are made
and a respectful reaction to parents’ decisions “can color all of their pre-
18 See http://www.agingwithdignity.org/five-wishes.php (accessed December 16, 2014).

ceding treatment-related interactions, and may influence how well parents

emotionally survive the dying and death of their child” (Hinds et al., 2010,
p. 1049).
The capacity or incapacity of children to participate in end-of-life
decision making cannot be assumed and must be individually determined
at each decision point (Hinds et al., 2010). This capacity begins at least
by age 10 and in some cases by age 6, and depends in part on children’s
own appraisal of their health and well-being. Because of their experiences,
many children are perceptive judges of the balance between the burdens
and benefits of treatment. Even children aged 5-6 can be capable of remark-
ably insightful abstract leaps and often express their views in drawings and
stories, for example.
Few studies of pediatric advance care planning have been conducted,
and those generally have involved small numbers of patients and families.
A recent review found three reports of systematic advance care planning
programs specifically for children, all in the United States (Lotz et al.,
2013).19 Although the three program models had similar overall designs,
they differed in care setting, target population, participants, and advance
directive used. These programs increased completion of advance directives
and parents’ initiation of discussions about treatment, and both patients
and physicians made increasing use of the programs over time.
The importance of involving children in these discussions is illustrated
by research among 24 pairs of adolescents with AIDS and their family de-
cision makers, which found that family members did not recognize when
their child wanted to have an end-of-life conversation (Garvie et al., 2012).
The great majority of the adolescents (90 percent) wanted to talk about
end-of-life issues before entering the dying phase, including 48 percent who
thought the best timing for end-of-life decisions was before getting sick
and another 24 percent who wanted to have conversations throughout the
illness trajectory: before getting sick, when first diagnosed, when first sick,
and when dying. While parents may be reluctant to have end-of-life discus-
sions when their child’s health is relatively stable (Edwards et al., 2012),
most clinicians (71 percent in the Durall et al. [2012] study) believe advance
care planning discussions often happen too late in the course of disease. An-
ticipatory guidance and reflection on the goals of care during times of both
stability and worsening illness are useful (Edwards et al., 2012). Families
are more likely to take advantage of palliative care options when they and
the care team recognize earlier in the clinical course that a cure is unrealistic
and focus instead on reducing suffering (Wolfe et al., 2000).
From the sparse research available, it is clear that parents of children
19
They are the FACE Intervention (Lyon et al., 2009), the Footprints Model (Toce and
Collins, 2003), and Respecting Choices (Hammes et al., 2005).

who will not survive need time for making decisions and preparing for
their child’s death. Understanding parents’ end-of-life decision making for
their children necessitates consideration of the reason, understanding, and
emotion they bring to their responsibilities and their roles as parents and
as decision makers (Bluebond-Langner et al., 2007). Factors that help par-
ents improve their decision-making capability are opportunities to make
decisions that accord with the family’s traditions and values, clear and
complete understanding of the child’s condition, and opportunities within
each clinical encounter to build trust and reinforce parents’ competence
(Hinds et al., 2010; Lannen et al., 2010). In sum, believing “they have acted
as ‘good parents’ in such a situation is likely to be very important to their
emotional recovery from the dying and death of their child” (Hinds et al.,
2010, p. 1058).
The Elderly
Older Americans are more likely than those who are younger to have
thought about their end-of-life preferences or completed an advance direc-
tive (CHCF, 2012; Pew Research Center, 2013; Tompson et al., 2013).
The higher rate of any kind of consideration of end-of-life care reflects
age-related increases in the prevalence of chronic illnesses, dementia, other
cognitive impairments, frailty, and disability. In one large study,20 the pro-
portion of people with one or more disabilities increased from 28 percent
2 years before death to more than half (56 percent) in the last month of
life (Smith et al., 2013a).
In one study of more than 5,000 65-year-old individuals, most were
able to articulate their preferences for end-of-life care, and most said
they would reject life-extending treatment if they had a terminal illness
involving either cognitive impairment or severe physical pain (Carr and
Moorman, 2009). That these survey respondents were more likely to
avoid life-sustaining treatments in the case of cognitive impairment than
in the case of physical pain may indicate the relative importance of these
experiences. A separate study, however, found that while pain control was
ranked as the most important attribute among both patients and physi-
cians, mental awareness was ranked lower in importance among physi-
cians than among patients (Steinhauser et al., 2000a). “This discrepancy
between what patients value and what physicians rate as important could
lead physicians to advocate for (or encourage the patient’s family to select)
20 In this study of 8,232 people over age 50 who died while enrolled in the Health and Retire-
ment Study between 1995 and 2010, disability was defined as needing help with at least one
of the following activities of daily living: dressing, bathing, eating, getting in or out of bed,
walking across the room, and using the toilet.

treatments that do not mesh with the patient’s preferences” (Carr and
Moorman, 2009, p. 769).
Infrequently considered is that an older person’s net financial worth is
positively associated with participating in any type of advance care plan-
ning, regardless of demographic, health, and psychological characteristics.
People with higher incomes are more likely to engage in estate and financial
planning,21 an activity that frequently includes or otherwise may trigger
some aspects of health-related planning, such as establishing a durable
power of attorney for health care (Carr, 2012b).
Differences Across Disability Groups
People with Cognitive Impairments

Determining whether an individual patient has the cognitive capacity to
participate meaningfully in decisions about end-of-life treatments is a chal-
lenge to clinicians, and “physicians regularly fail to recognize incapacity”
(Sessums et al., 2011, p. 420). Such a determination is especially challeng-
ing when it involves people who live in community group homes and other
community settings (rather than in state institutions), especially if they
have no family, guardian, or health care agent. Challenges further emerge
because of a “lack of clear standards and regulatory guidelines protecting
these individuals when institutionalized that do not transfer to the more
independent, ‘least-restrictive’ environments of privatized group homes”
(Artnak, 2008, p. 240).
Determining capacity generally requires tests of whether patients can
understand, retain, and use information about proposed treatment in the
decision-making process; appreciate the significance of the decision and
use reason in making it; and communicate their choice (Raymont et al.,
2004; Sessums et al., 2011). Capacity is task specific. People who lack the
decision-making capacity to make certain medical decisions—especially
high-risk or exceedingly complex ones—may nevertheless retain the ca-
pacity to make simpler decisions and even to choose a health care agent
they trust. However, determinations of capacity are not standardized, and
although many different instruments for assessing capacity exist, their
precision and suitability for different clinical settings vary considerably.22
21 An intriguing recent report found in four analyses that saving money, in itself, is a buffer
against anxiety about death by providing a sense of control over one’s fate and protecting
people from existential fears (Zaleskiewicz et al., 2013).
22 Sessums and colleagues (2011) recommend three capacity-assessing instruments suitable
for use in a physician office visit: the Aid to Capacity Evaluation (ACE), the Hopkins Com-
petency Assessment Test (HCAT), and Understanding Treatment Disclosure (UTD). These
instruments have robust likelihood ratios (sensitivity/specificity) and moderate to strong levels
of evidence.

In some situations, physicians may rely heavily on the views of fam-

ily members as well as their own knowledge of the fragile health of their
patients with intellectual disabilities (Wagemans et al., 2013). Clear com-
munication—verbal and nonverbal—and efforts to avoid possible misun-
derstandings by using language free of jargon are vital for clinicians serving
such patients (Tuffrey-Wijne and McEnhill, 2008).
A study of factors influencing parents’ resuscitation decisions for their
institutionalized children with severe developmental disabilities found that
a concerted effort to explain treatment options and end-of-life issues re-
sulted in some families’ making a change from full-resuscitation to do-not-
resuscitate status (Friedman and Gilmore, 2007). Family members, religious
leaders, and discussions with physicians had the greatest influence on those
who chose full resuscitation. Families’ perceptions of the child’s quality of
life or discomfort did not appear to affect the decision.
Homeless or “Unbefriended” Patients

“Unbefriended” patients who have neither decision-making capacity
nor a surrogate decision maker are at particular risk of not having their
wishes known or followed. Physicians and institutions need clear guidance
on how to handle the care of such patients, with the Veterans Health Ad-
ministration’s “detailed and transparent process . . . [being] a model for
other institutions” (Berlinger et al., 2013, p. 51). That policy describes a
collaborative approach that involves the hospital’s senior leadership and
guides professionals on how to collaborate with legal counsel if a court-
appointed guardian is needed.
Homeless people might be assumed to be a quintessential “unbe-
friended” population, with high rates of cognitive challenges due in part to
underlying mental health problems, substance abuse, and isolation (Karp
and Wood, 2003). A test of whether homeless people can and will complete
a counseling session on advance care planning and an advance directive was
conducted in Minneapolis (Song et al., 2010). More than one-quarter of the
subjects completed an advance directive, with a higher rate of completion
(38 percent) being seen among those who received guidance from a coun-
selor. About one-third of the group had someone (often a family member)
whom they wanted to make decisions about their care in specific clinical
situations.
Having a single health professional make unilateral decisions for an un-
befriended patient is ethically unsatisfactory in terms of protecting patient
autonomy and establishing transparency. Equally troublesome is “waiting
until the patient’s medical condition worsens into an emergency so that
consent to treat is implied” (Berlinger et al., 2013, p. 51), which compro-

mises patient care and prevents any thorough and thoughtful consideration
of patient preferences or best interests.
People with Physical Disabilities

People are not well able to foresee their own (or others’) capacity to
adapt to a disability (Stein, 2003), which means that others’ assessments
of quality of life, a fundamentally subjective judgment, are not necessarily
in accord with those of people with disabilities. The “paradox” of high
perceived quality of life despite serious and persistent disabilities has been
acknowledged for some time (Albrecht and Devlieger, 1999; King et al.,
2012).
People with severe neuromuscular diseases, such as Duchenne’s mus-
cular dystrophy or amyotrophic lateral sclerosis, are not necessarily well
served by advance directive language that refers to “extreme disability” as
a reason to withhold or withdraw treatment because of the lack of context
provided (Stein, 2003). The core definition of quality of life for many peo-
ple with disabilities is “living well,” and the underlying factors contributing
to living well are consistent across disabilities: health status, social con-
nectedness, being oneself (that is, able to continue doing things important
to the person), and financial security (Murphy et al., 2009). The possibility
of quality of life for people with disabilities nearing the end of life often is
ignored (Gill, 2010). Even health care providers familiar with people with
disabilities and their lives may hold negative views about their quality of
life. According to disability rights advocate Diane Coleman in testimony
provided to the committee, “Unfortunately, the disability community . . .
has a lot of experience with devaluation by physicians and other health
care providers, devaluation that leads to pressure to forego life-sustaining
treatment” (Coleman, 2013).
One approach suggested to improve the relevance and suitability of
advance care planning to people with disabilities is to reconsider including
disabling conditions as a reason for limiting treatment in living wills and
make greater efforts to help health care agents understand the complex
choices involved when a medical condition or injury might lead to substan-
tial disability (Stein, 2003).
Differences Among Religious Groups

The majority of patients at the end of their lives find religion to be
important; however, these needs are supported only minimally or not at
all by the current health care system (Balboni et al., 2007). Research
has documented a strong role of religious affiliation, although not neces-
sarily denominational affiliation, in both advance care planning and the

nature of treatment preferences at the end of life. In a large survey of

mostly white, non-Hispanic individuals aged 64-65, those from tradition-
ally defined religious groups (categorized as conservative, moderate, or
liberal Protestant; Catholic; other; and no religion) had similar treatment
preferences given two end-of-life scenarios, and the majority of people in
all religious subcategories “would reject life-sustaining treatments if faced
with an incurable terminal illness” (Sharp et al., 2012, p. 288). However,
people holding fundamentalist views,23 regardless of denomination, were
significantly more likely to want life-sustaining treatments than their non-
fundamentalist counterparts, even after controlling for sociodemographic
factors and health status. Two specific attitudes accounted for this differ-
ence: fundamentalists were less likely to believe that quality of life is more
important than just staying alive and more likely to say that their religious
or spiritual beliefs would guide their medical decisions. Similarly, in another
study, conservative Protestants and those attributing great importance to
religion/spirituality had a lower likelihood of engaging in advance care
planning (Garrido et al., 2013). Beliefs about God’s control of life’s length
and adherence to values supporting the use of all available treatments were
the main factors accounting for the relationships between religiosity and
advance care planning.
Additional spiritual beliefs that influence both treatment choices and
how those choices are made relate to the origin of illness and well-rooted
confidence that miracle cures can occur or that “those who believe in God
do not have to plan for end-of-life care” (Balboni et al., 2013; Johnson
et al., 2008, p. 1956). For instance, in a prospective, multicenter cohort
study, researchers found that positive religious coping (constructive reliance
on faith, e.g., through seeking God’s love and care) was associated with
receipt of intensive life-prolonging medical care near the end of life (Phelps
et al., 2009). Positive religious coping among patients remained a strong
predictor of intensive life-prolonging care despite statistically accounting
for known demographic (age and race) and psychosocial confounders,
including patients’ acknowledgment of terminal illness and completion of
advance directives. Thus, the choice of life-prolonging therapies near the
end of life among “religious copers” may be driven by their belief in God’s
divine healing or hope for a miraculous cure through intensive medical care.
The research literature also identifies a strong interaction between
religiosity/spirituality and certain racial/ethnic group membership (Buck
and Meghani, 2012; Johnson et al., 2005; Winter et al., 2007). Recent
data from the Pew Research Religion and Public Life Project (reported in
23 Defined as “agreeing or agreeing strongly with both of the two statements: (1) the Bible is
God’s word and everything happened or will happen exactly as it says and (2) the Bible is the
answer to all important human problems” (Sharp et al., 2012, p. 283).

more detail in Chapter 6) reveal that most white mainline Protestants (72
percent), white Catholics (65 percent), and white evangelical Protestants
(62 percent) would stop medical treatment if they had an incurable disease
and were suffering a great deal of pain. Most black Protestants (61 percent)
and Hispanic Catholics (57 percent), by contrast, would tell their physi-
cian to “do everything possible to save their lives” (Pew Research Center,
2013, p. 16).
Despite this well-documented relationship between race/ethnicity and
preference for intensive life-sustaining treatment at the end of life, mecha-
nisms explaining this relationship are not fully understood. In a large,
single-site study with a predominantly African American sample, those
who were highly religious and/or spiritual were more likely to have a des-
ignated decision maker for end-of-life decisions (Karches et al., 2012). In
this study, religious characteristics were not significantly associated with
the likelihood of having an advance directive or do-not-resuscitate order. In
another study, the effect of race on end-of-life decisions was only partially
mediated by a measure of guidance by God’s will (Winter et al., 2007). The
authors conclude that other dimensions of spirituality or unique constructs
not pertaining to spirituality and religiosity may operate simultaneously in
explaining end-of-life preferences among racial subgroups. Thus, pathways
to the use of intensive measures to extend life are multifactorial and may
go beyond religious beliefs (see the following subsection).
Differences Across Racial, Ethnic, and Cultural Groups24

Patients’ backgrounds, culture, ethnicity, and race influence their per-
ceptions about life, illness, suffering, dying, and death and the meaning
they ascribe to these events. These perceptions in turn affect preferences
for the kinds of care people want, how much they want to know about
their situation and choices, whether and how they want to make treatment
choices, whom they want to make those choices if they cannot, and the
role of the family in the entire process (Blank, 2011; Kagawa-Singer and
Blackhall, 2001).
In the coming years, rapid growth in the proportion of U.S. elderly
that are members of racial/ethnic minority groups will challenge clinicians
to communicate more effectively with people of many cultural traditions.
Between 2010 and 2030, the U.S. white, non-Hispanic population aged
65 and older is expected to increase by 59 percent, whereas the minority
population of the same age group will increase by 160 percent (Greenberg,
2011). It is vital, therefore, that clinicians be aware of common differences
24 Theterms used to describe population groups in this section vary and are generally those
used by the authors cited.

in perception among racial, ethnic, and cultural groups so that at the very
least, they can ask the right probing questions and have a firmer basis for
individualized understanding of patients and their families.
As noted above, although there are many differences among individual
perspectives and actions within groups, the general pattern in minority
populations is one of a lack of advance care planning and a preference for
more intensive treatments; poorer communication with clinicians is part
of this pattern. Although patients and families may not follow clinicians’
advice and recommendations, “avoiding such communication increases
the likelihood of poor end-of-life decision making” (Curtis and Engelberg,
2011, p. 283).
In many cultures, collective family decision making—and even some-
times the paternalistic decisions of the family patriarch—is considered as
important or more so than patient autonomy (Blank, 2011). Having made
reference to the collective wisdom of the family in every other aspect of
their lives to that point, dying individuals cannot realistically be expected
to make decisions completely on their own or to name a single health care
agent. In a presentation to the committee, Rebecca Dresser, a member of
the President’s Council on Bioethics (2002-2009), suggested that bioethics
has had an unintended and at times negative consequence by focusing on
autonomy and ignoring guidance and support (Dresser, 2013).
The fact that racial and ethnic minority individuals are less likely to use
advance directives or choose hospice care has been noted in numerous stud-
ies in different population groups (Johnson et al., 2008; Ko and Berkman,
2010; Ko and Lee, 2013; Muni et al., 2011; Phipps et al., 2003; Waite et
al., 2013; Zaide et al., 2013). At the same time, many authors have found
associations between minority race or ethnicity and the receipt of more in-
tensive end-of-life care (see, for example, Barnato et al., 2007; Mitchell and
Mitchell, 2009; Muni et al., 2011). This pattern may result from a lack of
information about advance planning documents and hospice (Wicher and
Meeker, 2012) or from lower levels of general or health literacy (Volandes
et al., 2008b). However, Volandes and colleagues (2008a) warn that “while
attention to patients’ culture is important, it is also important to avoid
ascribing choices to culture that may actually reflect inadequate comprehen-
sion” (p. 700). Despite the often high-pressure, complex situations in which
end-of-life decisions must be made, clinicians cannot make assumptions
about preferences or take communication shortcuts without jeopardizing
the quality of care.
The available body of evidence suggests that multiple factors are at
work in forming patient and family preferences and in translating those
preferences into care (see Table 3-3). As Ko and Lee (2013, p. 6) state,
“Taken together, race/ethnicity can be thought of as a proxy for personal,
cultural, and social contexts, so that an individual’s values, beliefs, and per-

TABLE 3-3 Summary of Patient and Family Factors in End-of-Life

Decision Making Among Individuals of Different Races, Ethnicities, and
Cultures
Factor Selected Source(s)
A combination of beliefs, preferences, and values Johnson et al., 2008
Spiritual beliefs Wicher and Meeker, 2012
Knowledge about advance directives Wicher and Meeker, 2012
Historical mistrust of the health care system Kagawa-Singer and Blackhall, 2001;
Wicher and Meeker, 2012
Cultural beliefs about family involvement Blank, 2011; Kagawa-Singer and
Blackhall, 2001; Ko and Berkman,
2010; Yennurajalingam et al.,
2013a,b
Desire to avoid emotional distress for self or family West and Hollis, 2012
by discussing death, fear, denial
“Don’t want to think about dying” or family Carr, 2012a
already aware of care preferences
Disagreement between patient and family Muni et al., 2011; Phipps et al., 2003
preferences for treatment
Patients and physicians each waiting for the other Phipps et al., 2003
to initiate the discussion
Extent to which family engages in estate planning Carr, 2011, 2012b
Literacy level Waite et al., 2013
Socioeconomic status* Carr, 2012b
*Although racial/ethnic differences in ICU care were found after controlling for socioeco-
nomic status, once a patient is in the ICU, socioeconomic status may not make a difference
(Muni et al., 2011).
sonal circumstances are necessary for [understanding] his or her [advance

care planning].”
A relative lack of advance care planning is seen among black, Hispanic,
and Asian patients across socioeconomic groups. It is seen as well across
care settings, including hospitals and nursing homes and even in intensive
care, where patients are least likely to be able to make their own decisions
and the need for such planning is greatest (Frahm et al., 2012; Muni et al.,
2011; Reynolds et al., 2008). “Advance directives, which are generally ac-
cepted in western civilization, hold little or no relevance within the [black
and minority ethnic] population” (Cox et al., 2006, p. 20), including Asian

cultures, in which family decision making predominates (Blank, 2011), and

American Indian cultures, which hold different views from those typical
of the white, non-Hispanic population regarding autonomy and informed
consent (Colclough and Brown, 2013).
Asians
Whereas one U.S. study of patients with head and neck cancers found
that more than 81 percent did not want anyone else present at the time of
diagnosis (Kim and Alvi, 1999), patients from family-centered cultures such
as the Japanese are more likely to want a relative present for such difficult
conversations (Fujimori and Uchitomi, 2009). A review of the literature
indicates that Asian patients in general may be less likely than patients
of other cultural backgrounds to want an estimate of life expectancy and
more likely to have family present when receiving bad news (Fujimori and
Uchitomi, 2009). In a separate study of more than 500 Japanese cancer
patients, Fujimori and colleagues (2007) found that married patients, those
with less helplessness/hopelessness, and those with more formal education
preferred to discuss life expectancy. Still, the majority of these patients
preferred to have their physician explain the status of their illness, break
bad news honestly and in a way that is easy to understand, and explain the
treatment plan.
African Americans
As noted, African Americans are less likely than white non-Hispanics
to express any treatment wishes or to have written advance care planning
documents. Compared with whites, they also are more likely to report inad-
equate or problematic communication with physicians (Trice and Prigerson,
2009), to have greater concerns about staying informed about the illness,
and to give the care their family member received a lower rating (Welch et
al., 2005). In response, some efforts have been made to carefully tailor the
messages regarding advance care planning to African American (as well as
other cultural) communities. One example is the comprehensive approach
of Gloria Anderson called “What Y’all Gon’ Do With Me?: The African-
American Spiritual and Ethical Guide to End of Life Care” (Anderson,
2006).
A study involving New York State nursing homes found lower rates
of hospice use and higher rates of in-hospital deaths among blacks than
whites: 40 percent of black patients and 24 percent of white patients died
in hospitals, a differential accounted for largely by a higher use of feeding
tubes and a lower use of do-not-resuscitate and do-not-hospitalize orders
among black patients (Zheng et al., 2011). Overall, according to the au-

thors (p. 996), “Other conditions being equal, residents from facilities
with higher concentrations of blacks have higher risk of in-hospital death
and lower probability of using hospice.” Further examination is needed of
why differentials in use occur by diagnosis and type of nursing home, and
especially how these differentials may affect quality of care and outcomes.
Some evidence suggests that the gap between African American and
white patients in the use of hospice has been shrinking. Between 1992 and
2000, the hospice use rate for whites doubled and for African Americans
increased almost four-fold (Han et al., 2006). Differences by race and eth-
nicity still are seen, however (see Table 3-4). Blacks are underrepresented in
the proportion of deaths that occur in hospice, which has been attributed,
at least in part, to the Medicare Hospice Benefit’s requirement that enrollees
give up curative efforts (Wicher and Meeker, 2012).
The well-documented historical abuse of African Americans in medical
research, dating back more than 150 years, continues to ripple throughout
the health care enterprise in many parts of the United States. The author of
the award-winning book Medical Apartheid says people tried to discourage
her from writing the book, claiming that “any acknowledgment of abuse
will drive African Americans from sorely needed medical care. However, a
steady course of lies and exploitation has already done this” (Washington,
2006, pp. 386-387). This history and profound lack of trust may be one
TABLE 3-4 Race and Ethnicity of U.S. Decedents, and Hospice Patients,
2011
Asian,
African Hawaiian,
White, American, Other Pacific
non-Hispanic non-Hispanic Hispanic Multiracial Islander
(%) (%) (%) (%) (%)
Race and 80.9 10.9 5.5 N/A 2.1
ethnicity of
U.S. decedents
aged 35 and
over (2011,
preliminary)a
Race and 82.8 8.5 6.2b 6.1 2.4
ethnicity of U.S.
hospice patients
(2011)
aFully 99 percent of hospice patients were aged 35 and older in 2011.
bThe National Hospice and Palliative Care Organization (NHPCO) reports Hispanic ethnic-
ity separately from race.
SOURCES: Hoyert and Xu, 2012; NHPCO, 2013.

reason why African Americans may prefer intensive life-sustaining treat-

ment near the end of life and believe that advance care planning and hospice
may deny them wanted services (Johnson et al., 2008, 2011; Lepore et al.,
2011; West and Hollis, 2012).
Some believe that poor physician communication skills contribute to
this lack of trust (Gordon et al., 2006). In a study of physician-patient
relationships, however, the issue on which African American and white
respondents were in closest agreement was whether they had complete trust
in their physician; African American respondents rated all other measures
of relationship quality significantly lower compared with white respondents
(Smith et al., 2007).
Hispanics/Latinos
Compared with other minority populations, less research has been done
among Hispanics/Latinos on end-of-life preferences and decision making.
The available studies suggest, however, that they follow the general pat-
tern seen among cultural and ethnic minority populations as previously
described (Carr, 2012a). Extent of knowledge about and attitudes toward
advance directives are strong predictors of whether such directives are
completed among both Hispanics and whites, and disparities in rates of
completion may be due to differences in these factors (Ko and Lee, 2013).
Greater acculturation was found to increase the likelihood of having an
advance directive among older Latinos (Kelley et al., 2010).
Interviews with 147 Latinos aged 60 and older from Los Angeles–area
senior centers found that most (84 percent) would prefer care focused on
relieving pain and discomfort if they became seriously ill, yet nearly half
(47 percent) had never discussed these preferences with either their family
or their physicians (Kelley et al., 2010). Interviewees expressed a strong
preference for family involvement in decision making about end-of-life
care, whether or not they were incapacitated. In another study, 71 percent
of hospitalized Latinos had not had a discussion about advance directives
with clinical personnel (Fischer et al., 2012). Latinos who had had such a
discussion were just as likely as any other population group members to
have an advance directive on file, suggesting that the primary barrier to
overcome is the low rate of such discussions.
System Factors in Decision Making

Mack and colleagues (2010a, p. 1537) conclude that “wider issues
within the health care system . . . could explain the major disparity we
identified. . . . White patients may have greater continuity of providers and
sites of care, with the confirmation of [do-not-resuscitate] orders and docu-

mentation of preferences, for example, at every encounter. Alternatively,

racial bias on the part of health care providers about patient preferences
could have a role.”
Several potential system barriers to advance care planning and comple-
tion of advance directives have been identified. For example, doctors’
belief that African American patients “are more likely to prefer intensive,
life-sustaining treatment” (Barnato et al., 2011, p. 1663) may lead to an
overestimation of an African American individual’s preference for such
treatment. This may be one reason black patients tend to receive life-
extending measures even when they have stated a preference for symptom-
directed care (Mack et al., 2010a) and why the hospital care they receive is
more likely to involve intensive services (Barnato et al., 2006, 2007).
Some patients may simply need more information about advance direc-
tives, the advance care planning process, and hospice and palliative care op-
tions (Johnson et al., 2008; Wicher and Meeker, 2012; Zaide et al., 2013).
As a practical matter, health care providers need to be sure that the relevant
discussions with all patients, regardless of race, ethnicity, language, and
health literacy level, are unhurried, culturally appropriate, free of confusing
medical terms and concepts, and adequately understood by the patient and
family. Physicians can be part of that discussion, but may not in all cases be
the most appropriate person to lead a lengthy conversation; bicultural and
bilingual patient navigators or other trained laypersons may be helpful in
talking to patients and their families about advance care planning. Materi-
als in languages other than English and designed for low-literacy popula-
tions may also improve knowledge, understanding, and rates of advance
care planning (Fischer et al., 2012).
Differences Across Literacy Levels

Levels of both general literacy and health literacy—defined as “the
degree to which individuals have the capacity to obtain, process, and un-
derstand basic health information and services needed to make appropriate
health decisions” (Ratzan and Parker, 2000, p. vi)—affect engagement in
advance care planning and the preparation of advance directives.
General Literacy
Most advance directives (which often contain complex legal construc-
tions and descriptions of medical technologies and procedures) require at
least a 12th-grade reading level (Castillo et al., 2011). The 2003 National
Assessment of Adult Literacy found that 14 percent of the total U.S. popu-
lation aged 16 and older have below-basic prose literacy, and adults 65 and
older account for more than one-quarter of these individuals (Baer et al.,

2009). And while adults with income below 125 percent of the poverty level
accounted for 24 percent of the adult population in 2003, they represented
56 percent of those with below-basic prose literacy.
Predictions are that the general English literacy of the U.S. population
will decline as a result of several factors, including continued low high
school graduation rates; continued low reading and math performance
among U.S. schoolchildren, particularly blacks and Hispanics; and the in-
creasing number of immigrants (Kirsch et al., 2007; Parker et al., 2008). In
2011, almost 61 million U.S. residents aged 5 and older spoke a language
other than English at home, and 7 percent of those residents—4.3 million
people—spoke English “not at all.” For 38 million Americans, the language
spoken at home is Spanish, and for 23 million more, it is something else—
with Chinese, French, German, Korean, Tagalog, and Vietnamese each
being spoken by more than 1 million people (Ryan, 2013).
Health Literacy
According to an IOM (2004) report, approximately 90 million people
have low health literacy. As a result, they would be likely to have signifi-
cant difficulty navigating the health care system and/or completing a range
of tasks key to self-managing complex chronic conditions successfully. In
general, people with low health literacy experience more hospitalizations,
use more emergency care, and are less able to interpret medication labels
and health messages appropriately than those with higher health literacy
(Berkman et al., 2011). Low-literacy seniors have poorer health status than
their more health-literate counterparts. Such difficulties are likely to esca-
late near the end of life.
Health literacy “is not simply the ability to read. It requires a complex
group of reading, listening, analytical, and decision-making skills, and the
ability to apply these skills to health situations” (NNLM, 2013). Frequently
measured and highly correlated health literacy components are “the ability
to interpret documents, read and write prose (print literacy), use quantita-
tive information (numeracy), and speak and listen effectively (oral literacy)”
(Berkman et al., 2011, p. ES-1), with oral literacy being less frequently
assessed. Numeracy skills are especially important in understanding prog-
noses, risks of treatment, and the expression of clinical uncertainty.
The 2003 National Assessment of Adult Literacy assessed the health
literacy of U.S. adults using multiple measures. The test content encom-
passed clinical and prevention topics, as well as navigation of the health
care system (Kutner et al., 2006). Key results (all statistically significant at
the 0.05 level) mirror those for general literacy:

• The health literacy of 36 percent of U.S. adults was basic or below

and was “proficient” for only 12 percent.
• White (non-Hispanic) and Asian/Pacific Islander adults had higher
average health literacy than other groups.
• Those aged 65 and older had lower average health literacy than
younger adults, and 29 percent of adults aged 65 and older had
below-basic health literacy.
Low health literacy affects certain population subgroups disproportion-

ately: people of lower socioeconomic status, racial and ethnic minorities,
people with disabilities, those with psychiatric and other cognitive disor-
ders, and the elderly. Nevertheless, “people of all ages, races, incomes, and
education levels—not just people with limited reading skills or people for
whom English is a second language—are affected by limited health literacy”
(ODPHP, 2010, p. 4).
Multiple studies have shown that health literacy affects health care
utilization, outcomes, and costs (Berkman et al., 2011). Individuals with
low health literacy whose difficulties are compounded by the emotional
stress and debilitation of an advanced disease may have difficulty reading,
comprehending, and/or signing insurance forms or complicated advance
directive documents. In one study of almost 800 patients aged 55 to 74,
almost one-half of those with adequate literacy, just more than one-quarter
of those with marginal literacy, and only one-eighth of those with low lit-
eracy reported having an advance directive (Waite et al., 2013). Uncertain-
ties about care preferences among less health-literate groups suggest a need
for culturally sensitive decision-making tools that take literacy into account
(Sudore et al., 2010).
ELEMENTS OF GOOD COMMUNICATION

IN ADVANCE CARE PLANNING
Elements of good communication in advance care planning include
open, clear, and respectful communication between clinician and patient;
good communication with families and health care agents; and shared deci-
sion making and patient-centered care.
Clinician-Patient Communication
Open, clear, and respectful communication between health care profes-
sional and patient is a precondition for effective advance care planning. It
also is critical to developing a therapeutic relationship and negotiating and
carrying out a treatment plan. Moreover, it is professionally rewarding and

personally satisfying for clinicians, and reduces anxiety and uncertainty for
patients (Dias et al., 2003).
A National Cancer Institute (NCI) monograph on improving patient-
centered communication is organized around six major goals:
• fostering healing relationships,

• exchanging information,
• responding to emotions,
• managing uncertainty,
• making decisions, and
• enabling patient self-management (Epstein and Street, 2007).
Several of these goals are major topics in this report and in this chapter in
particular. Authors of the NCI monograph point out the interrelationships
among these goals and the variability in information about each of them.
After-death interviews with 205 families of adult decedents included
several questions related to advance care planning. Although total “quality
of dying and death scores” were not influenced by whether the patient had
an advance directive, “higher scores were associated with communication
about treatment preferences, compliance with treatment preferences, and
family satisfaction regarding communication with the health care team”
(Curtis et al., 2002, p. 17). Specific components of communication associ-
ated with a better-quality dying experience included how well the health
care team listened to the family25 and explained the patient’s condition “in
language they can understand and in terms that are meaningful in their
lives” (Curtis et al., 2002, p. 27).
While in-the-moment decision making may provide the most accurate
reflection of patients’ wishes at the time a decision is needed, this approach
entails numerous barriers. For example, considering all the implications of
a decision—medical, psychological, logistical, financial, caregiving—may be
nearly impossible for patients and health care agents under such circum-
stances; many of them may not want to think about these issues and the
current trajectory of a serious advanced illness, and clinicians may not have
the time to discuss them. Nevertheless, clinicians—especially those who do
not have a lengthy previous relationship with the patient—need this input.
According to Sudore and Fried (2010, p. 257), what matters most to
patients “is the potential outcomes of treatment.” Asking patients about the
outcomes they most hope for or fear is a way to identify values and prefer-
25 Previous research indicated that when physicians talked to patients about advance direc-
tives, they spent two-thirds of the time talking; discussed attitudes toward uncertainty only
55 percent of the time; and asked about patients’ values, goals, and reasons for treatment
preferences 34 percent of the time (Tulsky et al., 1998).

ences in a way that may be more actionable than asking whether they want
or do not want specific interventions. And because opinions change over
time, discussions of this type need to be repeated. Good questions include
“What information would you like to know?,” “Who else should be given
the information and be involved in decision making?,” and “How should
that information be presented?” (Russell and Ward, 2011). A review of the
international literature26 suggests that cancer patients’ information prefer-
ences are affected by four factors: setting, manner of communicating bad
news, what and how much information is provided, and emotional support
(Fujimori and Uchitomi, 2009).
Despite the importance of good clinician-patient communication, many
impediments to such communication exist. Some are inherent in the pre-
viously discussed issues concerning specific populations. Others relate to
physicians themselves, including a lack of training, insufficient time, com-
peting needs, and personal discomfort in discussing terminal prognoses and
death. Walling and colleagues (2008) identify the following reasons for a
lack of the effective clinician-patient communication needed for advance
care planning:
• reluctance to give patients bad news, with doctors’ physiological

responses to breaking bad news showing that it is stressful for them
to do so;
• physicians’ avoidance of discussions of negative prognoses because
of some combination of uncertainty and not wanting to engender
hopelessness;
• lack of evidence about the best timing for discussions of future
treatment options and the above-noted changing concerns of pa-
tients over the course of illness that may warrant repeat discussions;
• reluctance on the part of patients to discuss these matters; and
• time constraints and distractions (pagers, for example).
“There is too little time during our appointments to discuss everything we

should” was the most common barrier to advance care planning mentioned
by almost two-thirds of 56 physicians responding to one survey, with want-
ing to maintain patients’ hope being the next most frequently cited (by 23
percent) (Knauft et al., 2005).
Lack of time to identify patients’ preferences can contribute to misun-
derstandings if doctors rely instead on their own instincts and experience.
Two studies found that even specially trained palliative care physicians who
26 This systematic review of English-language research papers was conducted by investiga-
tors in Japan, but they note that most of the research they found reported on experiences in
Western countries.

had had lengthy initial consultations with their patients most commonly as-
sessed the patients’ medical decision-making preferences (how actively they
wanted to participate in making treatment decisions) incorrectly (Bruera et
al., 2001, 2002).
The following sections look at four topics that exemplify the chal-
lenges of end-of-life communications: discussing prognosis, handling emo-
tional encounters, nurturing patients’ hope, and addressing spirituality and
religion.
Discussing Prognosis
Shortcomings in existing prognostic tools and methods contribute to a
lack of clarity about disease prognosis that weighs on physicians and clouds
communication (Smith et al., 2013b; see also Chapter 2). Population-based
estimates of the course of disease do not exclude the possibility that an
individual patient will be an exception at the short or long tail of longev-
ity. Not only is estimating prognosis difficult, but so, too, as noted above,
is the process of communicating it to patients and families (Lamont and
Christakis, 2003). Numerous studies have shown that to compensate, phy-
sicians tend to provide prognosis estimates infrequently or to give overly
optimistic estimates of survival. The more long-standing the physician-
patient relationship, the more likely it is that the physician will make an
inaccurate, overpessimistic prediction of prognosis (Christakis and Lamont,
2000). It is not surprising, then, that interviews with terminally ill patients
and their caregivers reveal considerable uncertainty about life expectancy
among both groups, even within a few weeks of death (Fried et al., 2006).
A study involving palliative care specialists found that almost all of
their consultations (93 percent) included some prognostic information and
more pessimistic than optimistic cues, gave greater emphasis to quality of
life than to length of survival, focused on the situation of the particular
patient rather than population-based estimates as the patient neared death,
and tended to provide more pessimistic views when talking to family mem-
bers without the patient present (perhaps because the patient was too ill to
participate) (Gramling et al., 2013).
Often family members and health care agents do not understand, have
not been made aware of, or cannot accept their loved one’s serious progno-
sis (see also the discussion of good communication with families and health
care agents below). Both patients and family members frequently “don’t
hear” negative messages about prognosis (Fried et al., 2003) and tend to
interpret even negative information optimistically—not because physicians
are unclear or families do not understand numerical risk information, but
because of psychological factors and belief in the power of positive think-
ing (Wachterman et al., 2013; Zier et al., 2012). On the other hand, even

a single pessimistic statement from an oncologist can reduce patients’ un-

checked optimism (Robinson et al., 2008).
Bringing physician and patient views into greater alignment is necessary
to give patients the best opportunity to make realistic and informed choices
about their care. One strategy is to make clear that the plan of treatment
may go well, but that it may not effect a cure of the underlying disease.
Oncologists make such statements in less than half of patient visits (46 per-
cent) (Robinson et al., 2008), and even so, patients often do not understand
them (Weeks et al., 2012).
Handling Emotional Encounters

Patients living with advanced serious illnesses experience significant dis-
tress, and their need to make difficult decisions about treatment contributes
to this suffering. These treatment decisions can be fraught with uncertainty
and are often clouded by a fear of death. Such distress is known to be highly
prevalent among cancer patients in particular, with up to 60 percent of
selected populations acknowledging emotional difficulties (Carlson et al.,
2010, 2012; Gao et al., 2010; Zabora et al., 2001). Many factors contrib-
ute to this distress, including managing physical symptoms, adjusting to
changes in social or occupational roles, and navigating the emotional ups
and downs of cancer remission and progression (Anderson et al., 2008). In
addition, most patients face multiple decisions about treatment throughout
the course of their illness. These decisions vary from discrete choices about
surgery to more general decisions about philosophies of treatment and bal-
ances between risk and reward.
Much of the research on clinician management of emotional encoun-
ters comes from studies of cancer patients, and it has found that clinicians
do not consistently handle patients’ and families’ expressions of emotions
well (Loewenstein, 2005; Pollak et al., 2007). In fact, research suggests that
empathetic responses by physicians to patients’ expressed emotions are rela-
tively rare, despite physicians’ high confidence in being able to address pa-
tients’ concerns and the frequency with which such concerns are expressed.
Analysis of audiotapes from almost 400 conversations between oncologists
and 270 patients with advanced cancer27 revealed that opportunities for the
oncologists to show empathy arose in patients’ remarks some 292 times in
398 conversations (Pollak et al., 2007). Some 68 percent of these remarks
were direct (e.g., “I have been really depressed lately”), and one-third were
indirect (e.g., “Oh, no. What do we do now?”).
Emotions can arise in patients in response to several broad categories
of issues: symptoms, diagnosis, and treatment; social issues; the health care
27 Most of these 270 patients had at least a 6-month relationship with their oncologist.

system, and death and dying (Anderson et al., 2008). Common words used
to express such emotion are “concern,” “scared,” “worried,” “depressed,”
and “nervous,” which would appear to be patently emotion laden. Yet
“when clinicians repeatedly miss patients’ expressions of emotion, patients
eventually cease to express emotion,” and an important opportunity to
relieve patient distress is foregone (Anderson et al., 2008, p. 808).
In these situations, clinicians can respond with statements or ques-
tions that are “continuers” (those that name the patient’s emotion, express
understanding, show respect or support, or seek to explore the emotion
further) or with “terminators” (statements that seek to cut off the discus-
sion). Pollak and colleagues (2007) found that oncologists responded with
terminators 73 percent of the time. Patients learn not to raise these issues
when met with such responses (see also Butow et al., 2002).
Gender is a predictor of the use of more empathetic language, with
women using more such language. In addition, the extent to which oncolo-
gists self-identified as more socioemotional than technical-scientific in their
orientation also predicted the use of empathetic language (Pollak et al.,
2007). In this connection, a survey of oncologists (48), oncology physician
assistants (26), and oncology nurses (22) found that most of the physicians
(70 percent) described themselves as “technological and scientific,” while
substantial majorities of the nurses (82 percent) and physician assistants
(68 percent) described themselves as “social and emotional” (Morgan et
al., 2010). Because the nurses and physician assistants also reported more
comfort with psychosocial talk, the authors of this study suggest that the
differences across professions in responding to patient emotion “could
have important implications for the design of future oncology care teams”
(p. 16), as well as for health professions education.
Dealing with patients’ emotions is one of the more challenging tasks of
the already difficult job of caring for people likely to die. Care and support
for the clinicians who do this work may reduce clinician stress and burnout
and make an important contribution to improving the care they provide
(Mack and Smith, 2012).
Nurturing Patients’ Hope

As suggested above, a primary reason physicians are not more candid
about discussing prognosis is that they believe “discussing end-of-life care
will take away the patient’s hope,” which might affect treatment outcomes
(Ganti et al., 2007, p. 5647). However, research suggests that honest con-
versations do not rob patients and families of hope or lead to depression,
and that being truthful does not hasten death (Shockney and Back, 2013).
By adopting a communication approach that simultaneously emphasizes
“hoping for the best and preparing for the worst,” doctors allow for im-

portant opportunities to learn from patients and families what they need,
what they fear, and what is possible (Back et al., 2003, p. 439).
Ways to encourage hope in a context of greater candor do exist. Cer-
tainly, clinicians can emphasize what can be done (managing pain and
symptoms, providing emotional support and care, maintaining dignity, and
providing practical assistance); explore realistic goals of care; and discuss
the priorities for day-to-day living (Clayton et al., 2005). The importance of
the latter topic is suggested by research showing that patients and caregivers
are sometimes reluctant to discuss the future because they are so focused
on the here and now (Knauft et al., 2005).
Addressing Spirituality and Religion

Attention to patients’ spiritual needs can improve the quality of com-
munication among clinicians, patients, and families and reduce the gap
between the health care patients want and expect and what they receive
(Edwards et al., 2010). Findings from numerous studies indicate that some
patients feel that a lack of spiritual support is an important communication
gap (e.g., Curtis et al., 2004; Peteet and Balboni, 2013). Many clinicians,
too, believe that spiritual support is an important aspect of care (Puchalski
and Ferrell, 2010). These findings parallel the goals of palliative care, with
its attention to body, mind, and spirit, and of patient-centeredness, which
encompasses “compassion, empathy, and responsiveness to the needs, val-
ues, and expressed preferences of the individual patient” (IOM, 2001,
p. 48). As physician and ethicist Daniel Sulmasy (2009, p. 1635) puts it:
if physicians and other healthcare professionals have sworn to treat pa-
tients to the best of their ability and judgment, and the best care treats
patients as whole persons, then to treat patients in a way that ignores the
fundamental meaning that the patient sees in suffering, healing, life, and
death is to treat patients superficially and to fall short of the best ability
and judgment.
A final general consideration is that, although spirituality and reli-

gion may be powerful forces for relief of suffering for certain individuals,
this does not mean physicians should encourage patients toward religious
practices “as something ‘medically indicated’ for health” (Sulmasy, 2009,
p. 1636). The healing benefits of spiritual practice may not be achievable
through external exhortation in any case, and may be possible only when
they form part of a person’s intrinsic belief system.

Good Communication with Families and Health Care Agents

Family involvement is an essential feature of advance care planning,
and the family’s understanding of the illness and its treatment and likely
course can help reinforce—or undermine—the work of the care team. In
unexpected situations, when a sudden devastating illness or injury occurs,
the same need for careful communication and family involvement occurs.
These situations are made more difficult by the likelihood that no prior
relationships exist among patient, family, and clinicians and when the pa-
tient’s condition requires redirecting efforts from resuscitative treatment to
palliative care (Limehouse et al., 2012a,b). When there is conflict within
the family, moreover, a health care agent is less likely to make decisions in
agreement with the patient’s wishes (Parks et al., 2011).
Much experience with communication in family meetings has been
gained in the long-term care setting. There, individuals may experience
significant mental as well as physical declines during their residence, and
family meetings are an important component of care. Family meetings have
been found to be most successful when they occur at times other than crises
and are used to share information, manage emotions, establish goals, and
support decision making (Ceronsky and Weissman, 2011). Well-established
guidelines exist for conducting such meetings effectively, and opportunities
for improving family meetings through cross-learning across care settings
may be useful (Hudson et al., 2008; McCusker et al., 2013). In the intensive
care setting, conferences in which family members are given opportunities
to speak and share their concerns reduce conflict with the doctor over care
decisions and family dissatisfaction with the process of making those deci-
sions (McDonagh et al., 2004).28
Physicians have avoided such conversations for various reasons—
perhaps an unwillingness to reveal the limits of medical knowledge; a desire
to avoid causing patients and families undue distress; or, as discussed above,
concern about causing a loss of hope. Avoiding these conversations may be
misguided, however, because it denies families and health care agents the
opportunity to prepare emotionally and logistically for their loved one’s
death (Apatira et al., 2008; Evans et al., 2009, p. 52).
Families’ and health care agents’ perceptions of prognosis may be af-
fected by patients’ physical appearance, how they have handled previous
illnesses, their strengths, and their will to live, as well as by the family
members’ and agents’ own optimism, intuition, and faith. Thus, families
attempt to meld and balance these factors with the information provided
by the clinician. For example, as Boyd and colleagues (2010, p. 1274) note,
28 In this study, audiotapes of 51 family conferences, involving 214 family members and led
by 36 different physicians, were made and analyzed. On average, clinicians spoke more than
70 percent of the time.

“discussing prognosis in terms of outcomes of populations of ‘similar’ pa-

tients may fall short if physicians do not also recognize and appreciate that
surrogates also view unique attributes of the patient as relevant.”
Interviews with 179 health care agents for ICU patients at an academic
medical center revealed that most (87 percent) wanted physicians to dis-
cuss an uncertain prognosis, and only 12 percent preferred to avoid such a
discussion in case the prognosis was incorrect (Evans et al., 2009). Health
care agents wanted to discuss prognosis despite uncertainty because they
believed uncertainty is unavoidable. They also felt that discussing uncer-
tainty leaves room for realistic rather than false hope (some noting that
they looked for hope elsewhere) and that physicians were the best and only
source for this information. Sharing information during such discussions
increases trust in the physician. In addition, having this information allows
health care agents to better support the patient and other family members,
gives them time to prepare to make difficult life support decisions, and al-
lows time to say good-bye and prepare for possible bereavement (Apatira
et al., 2008; Evans et al., 2009). Rather than avoiding discussion of the
likelihood of death, some health care agents want physicians to practice
“complete honesty,” although there is a range of receptivity to this informa-
tion (Evans et al., 2009).
My father had progressive bladder cancer and also was an Alzheimer’s

patient who lived at home with our mother. As our father’s disease
progressed, both his physical and mental health deteriorated. Our
mother also passed away quite unexpectedly, so his care was com-
pletely transferred to my sister and me. We became frustrated by the
lack of communication between the doctor’s office and us. It did not
appear the treatments our father was receiving were working, and he
had difficulty understanding why he had to go to the doctor’s for a
treatment that caused immediate pain and then prolonged discom-
fort. Phone calls, faxes, and e-mails were not answered. We found
the only way we could obtain information or answers to questions
was to physically enter the doctor’s office and request a face-to-face
meeting. Since I lived 5 hours away, it was necessary to schedule the
meetings during my half of the week at our father’s home. The doc-
tor even scheduled a surgery for our father near the end of his life.*

Conversations involving withdrawal of life support are inevitably dif-

ficult for all parties. Health care agents themselves are divided as to whether
they want the physician to make a recommendation in such situations. In
one study of 169 agents, 56 percent preferred to receive the physician’s
recommendation, while 42 preferred not to (2 percent had no preference)
(White et al., 2009). This differential was not related to health care agents’
demographic characteristics. These findings suggested to the authors that
physicians should not routinely provide recommendations about withdraw-
ing life support and instead be flexible in their approach to advising sur-
rogates in such situations, taking into consideration whether such advice
is appropriate, desired by the surrogate, and necessary “to ensure that
decisions reflect the patient’s values and preferences” (White et al., 2009,
p. 324).
Shared Decision Making and Patient-Centered Care

Increasingly, informing and involving patients regarding the decisions
about their care is recognized as a standard for good care (Fowler et al.,
2013). This evolution in thinking has occurred in recent decades with re-
spect to patient-clinician communication around care decisions broadly and
is particularly relevant in the context of advance care planning. “Shared
decision making emerged as a compromise in the longstanding debate about
the relative role of patient autonomy and provider beneficence in medical
decision-making” (Stark and Fins, 2013, p. 13).
In May 2013, an editorial in the British Medical Journal called for an
equal-footing partnership between patients and doctors. The editorial also
acknowledged that “achieving such a partnership is a challenge. Years of
paternalism have left doctors and patients unprepared for a different type
of interaction” (Godlee, 2013, p. 1).29
Shared decision making is neither clearly nor consistently defined in the
research literature, and more robust research methods are needed to gauge
its effects more precisely (Lipkin, 2013). Nonetheless, it clearly shares char-
acteristics and a development path with the notion of patient-centered care.
Indeed, shared decision making is one aspect of patient-centeredness, an
essential component of quality care. Shared decision making encompasses
• eliciting and understanding the patient’s perspective;

• understanding the patient’s psychosocial and emotional context;
29
A number of articles on the topic of shared decision making from the British Medical
Journal have been collected at http://www.bmj.com/specialties/shared-decision-making (ac-
cessed December 16, 2014).

• developing a shared understanding of the clinical problem and its

appropriate treatment, given the patient’s goals, preferences, and
values; and
• empowering patients, which is achieved through active involvement
of patients in decision making (LeBlanc and Tulsky, in press).
For patients with advanced serious illnesses, shared decision making

is intended to create a context in which future decisions can be made that
remain true to patients’ preferences. This approach eschews the idea of
specific, checkbox-style advance directives, and emphasizes participation by
patients and, importantly, their families, as well as their health care agents
(who may be family members), whose thoughtful selection is strongly en-
dorsed by current practice. According to Gillick (2013, p. 575), “For frail
elders and patients with advanced illness, many of whom have multiple
chronic diseases, patient-centered care is impossible without caregiver in-
volvement . . . [and] . . . the critical role of caregivers deserves considerably
more attention from clinicians.”
A narrative synthesis of some 37 articles on shared decision making in
palliative care identifies several important themes (Bélanger et al., 2010).
Although patients prefer shared decision making (preferred by 40-73 per-
cent of patients surveyed in five studies) and it is important to them, they
often are not afforded the chance to participate. In addition, the effects
of participation on patient outcomes (anxiety and depression, patient sat-
isfaction, and life expectancy) are not yet clear, and both barriers to and
facilitators of shared decision making have been identified. Barriers include
patients’ and families’ unrealistic expectations of treatment; the way op-
tions are framed for patients; delaying decisions to follow predetermined
patterns of care; and providing information too gradually so that when a
decision is needed all the information is not in hand. Facilitators include
clinicians providing sufficient, realistic information; presenting choices; and
using tools to aid patients in decision making.
How Patients Make Decisions

Advance care planning is founded on the expectation that people, once
presented with evidence and facts, will make rational choices based on well-
established views and preferences (Swindell et al., 2011). The growing field
of behavioral economics is challenging both the notion of “rational choice”
and the presence of “well-established views.” Clinicians assisting patients
benefit from understanding of biases and “rules of thumb” by which pa-
tients make decisions (Swindell et al., 2010). Examples of these decision-
making methods as they might emerge in end-of-life situations include

• being unduly influenced by a memorable event (such as news re-

ports of the extremely rare cases in which someone in a coma for
many years “miraculously” returns to consciousness);
• believing that some exceptional factor will prevent a patient’s dis-
ease from following its usual course;
• being influenced by unrelated past occurrences (such as a rela-
tive’s successful recovery from a serious disease or difficult, painful
death); and
• preferring inaction to avoid harm (such as declining opioid drugs
early in the illness so that “they will work when I need them”),
even though this inaction may cause greater harm than action.
Such biases and heuristics can unintentionally thwart what patients

themselves see as their best interest and goals (Swindell et al., 2010). Clini-
cians who understand the ways in which patients’ decision making is not
always rational can help patients reflect on their biases and to see whether
doing so changes their expressed preferences (Halpern, 2012a; Swindell et
al., 2011).
Insights into the psychology of human decision making can be used “to
develop, test, and implement scalable interventions that improve the quality
of the health decisions made by patients, family members, and providers”
(Halpern, 2012b, p. 2789). “Choice architecture” takes into account the
ways “choices are presented and the environment in which decisions are
made,” adjusting them so that better decisions result (Halpern, 2012b,
p. 2789).
Gaps between people’s intentions and their behavior are a prominent
theme in the end-of-life field. A prime example is the gap between people
believing in the importance of advance directives and discussions about
end-of-life wishes and their taking action in accordance with that belief
(CHCF, 2012; The Conversation Project, 2013). Certainly patients have
been shown to vary a great deal in the extent to which they want to be
involved in decisions about their end-of-life care, and it may be possible to
encourage and support good decision making without relying on unrealistic
expectations about patient engagement.
Choice architecture employs a number of key strategies designed to
improve the decision environment, including use of defaults and precom-
mitment (Nease et al., 2013). The precommitment approach takes into ac-
count that most people place a higher value on present or imminent events
than on events that will occur in the future. Advance care planning is an
example of an action that has fairly steep immediate costs (contemplation
of one’s mortality and the possibility of being unable to make decisions)
and benefits that may appear only theoretical. The younger and healthier
the person is, the more theoretical those benefits may seem. Default or “opt-

out” choices assign patients a provisional decision; if they want to make a

different decision, they can, but must actively do so.30 All default options
in the health care system (for example, aggressive care unless stated other-
wise) carry biases. Choice architecture seeks to make these biases explicit
and, in some cases, encourage changing the default to one that is generally
preferred by patients and clinicians. By doing so, biases that currently drive
decisions may be undone, and patient choice may be enhanced. According
to Halpern and colleagues (2013, p. 412), “A hallmark of defaults is that
they lead gently, without restricting any options.” A randomized study of
patients with incurable lung cancer found that when the patients were pre-
sented with an advance directive in which the default was palliative care,
they were significantly more likely to elect that option than were patients
given a standard advance directive or one that defaulted to life-extending
treatment (Halpern, 2012b; Halpern et al., 2013). In studies in which a
hypothetical advance directive used forgoing life-sustaining interventions
as the default, many more study participants indicated that this was their
preference than was the case if they had to actively choose that option
(Kressel and Chapman, 2007; Kressel et al., 2007).
The important implication of the research by Kressel and colleagues is
that “people might not have well-formulated, strongly held views on what
forms of care at the end of life will best promote their values” (Halpern
et al., 2013, p. 409). Rather than reflecting deeply ingrained preferences,
their responses to advance directive document choices may be constructed
at the time they are asked to provide them, similar to what has been ob-
served with respect to other health care choices (Halpern et al., 2007). This
hypothesis was tested with 132 patients having incurable lung disease and
no prior directive (Halpern et al., 2013). Patients were randomly assigned
to be presented with one of three advance directives that differed only in
their embedded default options. While most of the patients chose what the
authors called comfort-oriented care, the proportion making that choice
was much higher in the group receiving the “comfort default” directive.
When, subsequently, the study design was explained to patients along
with the data showing how defaults had affected the choices of the patient
groups, only 2.1 percent of participants reconsidered their selections, and
no patients revised their original choices. This result suggests that changes
to the way advance directives are structured that make it simple for patients
to choose the kind of care most patients prefer (always with the option to
30 An early successful application of “opt-out” decision making was designed to encourage
people to participate in an employer-subsidized 401(k) savings plan. Automatically enrolling
employees unless they actively opted out “materially increase[d] participation while maintain-
ing a high level of employee satisfaction” (Nease et al., 2013, p. 245).

choose otherwise) might “provide a novel way to improve end-of-life care

for large populations of seriously ill patients” (Halpern et al., 2013, p. 414).
Decision Aids
Decision aids have been developed to guide discussion, support pa-
tients, and make discussion of difficult issues easier.31 Recognizing that
patients nearing the end of life are likely to be in a state of decline, the
designers of these aids generally attempt to make their completion as low
burden as possible. Many of these tools have been tested and used in the
palliative care setting or with cancer patients, and many of them apply to
a single decision, such as whether to place a feeding tube in a cognitively
impaired patient.
Even an apparently simple open-ended question such as “What is your
understanding of your illness?”—certainly fundamental to a discussion of
choices—can have significant clinical utility. A study of patient responses to
this question found substantial differences among patient groups: 77 per-
cent of patients with cancer could name or describe their condition, some-
times using precise biomedical terms; 39 percent of patients with congestive
heart failure and 41 percent with chronic obstructive pulmonary disease
could do so; and some patients (particularly those with limited education)
had little knowledge or understanding of their illness (Morris et al., 2012).
Patients’ responses to this question may, therefore, signal the opportunity
for clinicians to provide more information about the illness, discuss how it
may affect the patients’ lives, and describe its likely course, as well as reveal
whether patients have unmet emotional needs.
Decision aids are of three general types: those used in face-to-face
encounters; those designed for use outside clinical encounters (take-home
materials, for example); and those that use some intervening medium, such
as telephone or video (Elwyn et al., 2010). Results of randomized trials
of video decision aids, reported in Table 3-5, show that across the board,
participants were comfortable with the decision aids and found them useful.
According to the authors of one of these studies, “Physicians often under-
estimate the emotional resilience of patients and their desire to be involved
in this decision-making process” (El-Jawahri et al., 2010, p. 309).
A research team at the forefront of developing and evaluating decision
aids defines them as follows:
Decision support interventions help people think about choices they face:
they describe where and why choice exists; they provide information about
31
For example, the question “Are you at peace?” may be a sufficient screening question
to identify patients for whom fuller spiritual assessment or specialized services are needed
(Steinhauser et al., 2006).

options, including, where reasonable, the option of taking no action. These

interventions help people to deliberate, independently or in collaboration
with others, about options, by considering relevant attributes; they sup-
port people to forecast how they might feel about short, intermediate and
long-term outcomes which have relevant consequences, in ways which help
the process of constructing preferences and eventual decision making, ap-
propriate to their individual situation. (Elwyn et al., 2010, p. 705)
Video is not the only effective medium for decision aids. In another
recent study involving 120 patients with metastatic cancer who were no
longer receiving curative therapy (55 intervention patients, 65 control
TABLE 3-5 Effects of Video Materials on Health Care Decisions Among

Selected Audiences
Video Content Result Audience
Patient with advanced Proportion choosing comfort General population over
dementia care* increased from 50% to age 40
(Deep et al., 2010) 89%
Goals of care (life- 80% of viewers chose comfort Patients in skilled nursing
prolonging, basic, or care,* compared with 57% in facilities
comfort care*) control group
(Volandes et al., 2012a)
Goals of care 91% of viewers chose comfort People with advanced

(El-Jawahri et al., 2010) care,* compared with 22% in cancer
control group
Cardiopulmonary 20% of viewers wanted People with advanced
resuscitation (CPR) CPR, compared with 48% in cancer
(Volandes et al., 2013) control group
CPR 40% of viewers had People with pancreatic or
(Epstein et al., 2013) their advance care plans hepatobiliary cancer
documented 1 month after
the intervention, compared
with 15% in control group;
viewers’ preferences for
CPR changed significantly
postintervention, with 24% no
longer wanting CPR
Goals of care Statistically significant People with advanced
(Volandes et al., 2012b) decreases in proportion who cancer
wanted CPR or ventilation
*The phrase “comfort care” was used by the authors and described as care that maximizes
comfort and alleviates pain or suffering.

patients), the intervention group received a pamphlet (“Living with Ad-

vanced Cancer”) and a discussion with a psychologist about preferences
and values (Stein et al., 2013). Those receiving the intervention had do-not-
resuscitate orders placed earlier and were less likely to die in the hospital
than patients in the control group. Previous research had indicated that
providing the pamphlet alone caused patients distress; with the addition
of the discussion with a psychologist, no negative impact on patients or
caregivers was found.
The timing of the use of decision aids also is important. By the time a
patient is admitted to a hospital palliative care unit, for example, many of
the most significant decisions may have been made, or patients may be too
sick or preoccupied to participate (Matlock et al., 2011).
MODEL ADVANCE CARE PLANNING INITIATIVES

The National Quality Forum’s National Framework and Preferred
Practices for Palliative and Hospice Care Quality includes seven preferred
practices related to advance care planning (NQF, 2006). They reflect many
of the issues raised in this chapter, and many build on positive experiences
with model advance care planning initiatives that have improved the effec-
tiveness of the process or its reach in the population. The seven practices
are as follows:
• Document the designated surrogate/decision maker in accordance

with state law for every patient in primary, acute, and long-term
care and in palliative and hospice care.
• Document the patient/surrogate preferences for goals of care, treat-
ment options, and setting of care at first assessment and at frequent
intervals as conditions change.
• Convert the patient treatment goals into medical orders, and ensure
that the information is transferable and applicable across care set-
tings, including long-term care, emergency medical services [EMS],
and hospital care, through a program such as the Physician Orders
for Life-Sustaining Treatment (POLST) program.
• Make advance directives and surrogacy designations available
across care settings, while protecting patient privacy and adherence
to Health Insurance Portability and Accountability Act (HIPAA) of
1996 regulations, for example, by using Internet-based registries or
electronic personal health records.
• Develop health care and community collaborations to promote
advance care planning and the completion of advance directives

for all individuals, for example, the Respecting Choices and Com-
munity Conversations on Compassionate Care programs.
• Establish or have access to ethics committees or ethics consultation
across care settings to address ethical conflicts at the end of life.
• For minors with decision-making capacity, document the children’s
views and preferences for medical care, including assent for treat-
ment, and give them appropriate weight in decision making. Make
appropriate professional staff members available to both the child
and the adult decision maker for consultation and intervention
when the child’s wishes differ from those of the adult decision
maker (NQF, 2006, pp. 42-45).
These standards reflect several innovations in advance care planning

that have occurred since Approaching Death (IOM, 1997) was published.
These innovations overcome some of the difficulties experienced with con-
ventional advance directives related to timing, relevance, lack of support,
and unavailability when needed.
Physician Orders for Life-Sustaining Treatment

The POLST paradigm is an approach to advance care planning de-
signed to ensure that seriously ill or frail patients can choose the treat-
ments they want or do not want and that their wishes are documented
and will be honored in an emergency (National POLST, 2012a). POLST
is a clinical process designed to facilitate communication between health
care professionals and patients, their families, their health care agents,
or their designated surrogates. The process encourages shared, informed
medical decision making. The result is a set of portable medical orders,
POLST forms (see Annex 3-2), that respects the patient’s goals for care
with regard to the use of cardiopulmonary resuscitation; artificially ad-
ministered nutrition; and other medical interventions, such as intubation
and future hospitalization (Bomba et al., 2012; National POLST, 2012a).
Medical intervention options generally are described as “comfort measures
only,” “limited additional interventions,” and “full treatment” and align
with the intensity of the desired interventions. “Comfort measures only”
indicates that the primary goal for care is maximizing comfort. If comfort
needs cannot be met in the patient’s location, the patient is transported to
a clinical care setting where those needs can be met. “Comfort measures”
are medical care and treatment provided with the primary goal of relieving
pain and other symptoms and reducing suffering, and may include offer-
ing food and fluids by mouth; turning the patient in bed; providing wound
care; and providing oxygen, suctioning, and other manual treatment of air-
way obstruction for comfort. “Limited additional interventions” includes

comfort measures plus some medical interventions, such as administration

of antibiotics and intravenous fluids. “Full treatment” includes measures
provided in the other two categories, as well as use of additional medical
interventions, such as intubation or mechanical ventilation.32
These medical orders support the person’s preferences with respect to
treatment, preferred site for receiving care, and death, and can be reviewed
and revised as needed (Bomba et al., 2012; National POLST, 2012a). They
are intended to stay with patients near the end of life as they are transferred
from home to hospital or any other type of care facility and to be in force
wherever patients may be. POLST are followed in all care settings and by all
health care professionals, including emergency medical services personnel,
who in an emergency, cannot interpret a living will or take orders from a
health care agent (Bomba et al., 2012; National POLST, 2012b,c).
POLST are not intended for everyone; they are for people with serious
illnesses or frailty whose health care professionals would not be surprised
if they died within the next year, based on their current health status and
prognosis. POLST also are appropriate for patients who reside in a long-
term care facility or receive long-term services at home as a result of frailty,
and for persons of advanced age who want to avoid or receive any or all
life-sustaining treatment. Among vulnerable populations, including persons
with disabilities, POLST are intended only for seriously ill or frail patients
facing end of life, not the entire population (Bomba et al., 2012; National
POLST, 2012a).
The POLST process begins with the clinician’s preparing for the dis-
cussion by first reviewing the patient’s current health status and prognosis
to ensure that POLST are appropriate for that patient. The second step
entails retrieving and reviewing completed advance directives and prior
do-not-resuscitate and/or POLST forms; the third, determining the patient’s
capacity to make POLST decisions; and the fourth, educating the decision
maker about POLST. A conversation or series of conversations between
the patient and trained clinicians helps define the patient’s values, beliefs,
and goals for care that will drive the choice of interventions. The discus-
sion can occur in all clinical care settings, including the physician’s office,
the long-term care facility, the hospital, or the patient’s home. If the patient
lacks the capacity to make medical decisions outlined on the POLST form,
discussion occurs with the health care agent or the appropriate surrogate,
identified under state law. The clinician reviews possible treatment options
on the entire POLST form and ensures shared, informed medical decision
making. The POLST form is signed by the physician, because it represents
32
Each state POLST paradigm program is responsible for developing that state’s POLST
form; therefore, the forms vary from state to state. Forms from various states are available at
http://www.polst.org/educational-resources/resource-library (accessed December 16, 2014).

a set of medical orders; in some states, nurse practitioners are authorized to

sign the form. The conversation should also be documented in the patient’s
medical record (Bomba et al., 2012).
The POLST form typically is printed in a bright, neon color so it is dif-
ficult to overlook on the patient’s home refrigerator or in an inches-thick
medical chart. It is written in plain language, avoiding both medical and
legal jargon, and intended to be based on conversations among the clini-
cian, the patient, and the health care agent (Bomba et al., 2012; National
POLST, 2012d).
The physician (or nurse practitioner, if state scope-of-practice regula-
tions allow) should review the POLST form periodically as required by
law, and also if
• the patient is transferred from one care setting or care level to

another,
• there is a substantial change in the patient’s health status (for better
or worse), or
• the patient or other decision maker changes his or her mind about
treatment.
The advantages of POLST forms are such that their use is supported
by the American Hospital Association, AARP, the National Hospice and
Palliative Care Organization, and other groups. At the community level, a
project sponsored by Excellus BlueCross and BlueShield in Upstate New
York has worked to educate the community about that state’s POLST
program (called Medical Orders for Life-Sustaining Treatment [MOLST])
(Compassion and Support, 2014a). The project has engaged employers,
insured members, and clinicians in efforts to increase advance care plan-
ning and adherence to patients’ informed preferences (see also Chapter 6).
The POLST form is neither an advance directive nor a replacement
for advance directives (Bomba et al., 2012; National POLST, 2012e). Both
advance directives and the POLST form are helpful advance care planning
documents for communicating patient wishes when appropriately used. As
discussed in this chapter, one of the principal problems with the “living
will” type of advance directive is that it may have been completed when a
person was in relatively good health. At that point, it is almost impossible
for people to predict the kind of care they would want in some future, more
compromised state. Another problem is that clinicians often are unaware
of the existence of the advance directive and do not always follow it if they
are, if only because they believe patients’ former wishes are not relevant
in their current situation. Finally, advance directives often do not accom-
pany patients as they transfer between care settings. The POLST form is
designed to overcome these limitations. Salient features of the POLST form

TABLE 3-6 Differences Between POLST and Advance Directives

Characteristics POLST Advance Directives
Intended for People who are seriously ill All adults
Applies to Current care Future care
Form completed by Health care professionals, Patients
based on in-depth
discussion with their
patients
Resulting form Medical orders Advance directive
Health care agent or Can engage in discussion if Cannot complete
surrogate role patient lacks capacity
Portability Clinician responsibility Patient/family responsibility
Periodic review Clinician responsibility Patient/family responsibility
SOURCE: Adapted from Bomba et al., 2012.
and the ways in which it differs from advance directives are summarized
in Table 3-6.
Like advance directives, POLST forms allow patients to choose a range
of intensities of care, from comfort measures only to full treatment, and
to indicate whether they want emergency medical services personnel to at-
tempt resuscitation. In one study of more than 700 patients with POLST
in place, 42 percent specified comfort measures only, 47 percent specified
limited interventions, and 12 percent specified full treatment (Hickman et
al., 2010).
Effects of POLST on Patient Care

The developers of the POLST paradigm have conducted a number of
studies to document its effects. These studies have yielded the following
findings:
• The treatment preferences of nursing home residents without a

POLST form were less likely to be reflected in medical orders, and
their preferences for treatment other than cardiopulmonary resus-
citation were less likely to be recorded (Hickman et al., 2010).
• Nursing home residents with POLST comfort measures only orders
were less likely to receive life-prolonging treatments than those
with POLST limited treatment or full treatment orders and those
with traditional do-not-resuscitate and traditional full-code orders
(Hickman et al., 2010).

• Having a POLST form made no difference in the amount of symp-

tom care patients received (Hickman et al., 2010).
• Treatments provided to nursing home residents were highly con-
sistent with POLST orders for resuscitation (98 percent), medical
interventions including hospitalization (91 percent), and antibiotic
administration (93 percent), but less consistent with orders regard-
ing use of feeding tubes (64 percent) (Hickman et al., 2011).
• Patients whose POLST orders specified higher levels of medical
treatment received that treatment (Hammes et al., 2012; Hickman
et al., 2011).
• Care diverged from that specified in POLST orders only rarely
(Hammes et al., 2012).
• One-half to three-quarters of patients with a POLST form specify-
ing no resuscitation attempt nevertheless had orders for limited
additional interventions or full treatment, which can include other
medical interventions or life-sustaining treatments (Fromme et al.,
2012; Hickman et al., 2009).
New York authorized the statewide use of MOLST in all care settings
in 2008 after a successful 3-year community pilot was conducted to ensure
that emergency medical services personnel could read and follow do-not-
resuscitate and do-not-intubate orders on the MOLST form (Compassion
and Support, 2008). Standardized professional training and community
education materials, policies and procedures, and a quality assurance pro-
gram were developed. Community-wide quality and implementation data
were collected from emergency medical services, hospitals, nursing homes,
hospices, assisted living facilities, enriched housing facilities, and Program
of All-inclusive Care for the Elderly (PACE) programs in two Upstate
New York counties (Caprio and Gillespie, 2008; Compassion and Support,
undated-b).
California authorized the use of POLST in 2009, and efforts have been
made to encourage facilities in the state, including nursing homes, to adopt
their use. Among 283 respondents to a survey of state nursing homes, 69
percent reported that they had admitted a resident who had a POLST form
(Wenger et al., 2012). Overall, 54 percent of nursing home residents had a
POLST form. Fewer than 10 percent of nursing homes reported any difficul-
ties in following the POLST orders or having emergency personnel follow
them; however, problems that reportedly did arise with more frequency
included
• difficulty in retrieving original POLST forms from other facilities

(62 percent of respondents),

• difficulty in getting physicians to complete (38 percent) and sign

(34 percent) the forms,
• family disagreement with the content of the forms (28 percent), and
• difficulty in interpreting POLST orders to make treatment decisions
(21 percent).
Oregon researchers conducted a small survey of emergency medical

services personnel to learn the impact of POLST on their work. They
found that POLST orders affected both treatment and decisions regarding
whether to transport patients to a hospital (Schmidt et al., 2013). Another
recent study of 58,000 decedents in Oregon found that nearly 31 per-
cent had POLST forms entered in Oregon’s POLST registry. Among those
whose completed POLST forms stated a preference for comfort measures
only (“Patient prefers no transfer to hospital for life-sustaining treatments.
Transfer if comfort needs cannot be met in current location.”), that prefer-
ence was highly likely to be honored (Fromme et al., 2014, p. 2). Only 6.4
percent of these decedents died in a hospital, compared with 34.2 percent
of decedents without a POLST form in the registry. This suggests that such
forms can be effective in limiting unwanted life-sustaining treatment.
New POLST programs in many states have carried out substantial
community engagement efforts with diverse audiences. These efforts are in-
tended to provide education about the program, especially how the POLST
form differs from conventional advance directives; to obtain consumer and
professional input; and to build momentum for statewide adoption (exam-
ples include the efforts of New York, described at http://www.compassion
andsupport.org, and those of the Massachusetts Department of Public
Health [2011]).
Challenges to POLST
Although many states have or are working to implement POLST, oppo-
sition to the paradigm has emerged in some communities, in some cases as
a result of confusion between POLST and advance directives. For example,
disability rights advocates successfully lobbied against Connecticut’s effort
to enact POLST legislation in spring 2013 because they felt POLST limited
rather than expanded patient options (Hargrave, 2013). Some Catholic
theologians and organizations, including the Catholic Medical Association,
have also raised objections to POLST (Brugger et al., 2013; Nienstedt et
al., 2013), while others have endorsed them when used properly (Catholic
Bishops of New York State, 2011). In a letter to the committee, the Catholic
Health Association, which takes the view that portable medical documents
such as POLST forms can be useful, emphasized the importance of “attend-
ing to some of the identified shortcomings and risks of these documents”

(Rodgers and Picchi, 2013, p. 2). Their concerns related to POLST include
the following:
• The definition of whom POLST are for—The core idea is that

POLST are for people who are seriously ill and near the end of life,
but deviations from that notion have been seen.33
• Relevant training of health professionals—People who work with
POLST, especially emergency personnel and staff of long-term care
facilities, need training in the POLST process; effective communica-
tions regarding its use; and other skills, such as an understanding
of the applicability of a POLST form in a given situation so they
do not deny treatment for remediable problems that are not im-
minently life-threatening.
• Potential lack of meaningful conversation—Clinicians may sim-
ply check off the boxes on the POLST form without having the
necessary conversations with patients and health care agents. In
New York State, an eight-step protocol has been developed to
guide clinician-patient/family interactions so as to ensure thought-
ful MOLST discussions (Bomba et al., 2012).
• Significance of the clinician’s signature—Physicians or other clini-
cians sign the form, but attest only that the orders are to the best of
their knowledge consistent with the patient’s current medical con-
dition and preferences, not that they participated in the discussion
of the orders. But the POLST form cannot be viewed as “simply
another form to be completed by the health care professional, sepa-
rated from the context of the advance care planning that is essential
to the POLST paradigm” (Rodgers and Picchi, 2013, p. 2), because
physicians are accountable for the medical orders in the form when
they sign it.
• Voluntary nature of POLST—Perhaps especially in long-term care
facilities and other institutional settings, the fundamental voluntary
nature of POLST, in whole or in part, must be safeguarded, and
completion of a POLST form should not be a requirement.
Respecting Choices
One of the best-known advance directive initiatives is Respecting
Choices, a community-wide effort begun in 1991 in LaCrosse, Wisconsin.
33 Forexample, Delaware’s Division of Public Health asked medical providers to discontinue

using the state’s MOLST form until it could be revised because the agency determined it was
being used for non–terminally ill patients, which is “beyond the legal parameters set forth in
regulation 4304” (Delaware Health and Social Services, 2012).

Initially working with the city’s major health systems, the program was
aimed not only at encouraging people to complete advance directives,
although that is a challenging task in itself, but also at changing the in-
stitutional and professional culture and routines to promote and respect
advance care planning in a comprehensive way (AHRQ, 2010; Gundersen
Health System, 2014a,b). The program produces educational materials for
patients; trains facilitators to discuss end-of-life questions with patients
and prepare them for the end of life; and ensures that advance directives
are available in patients’ medical records, now electronically. The project
has also adopted the POLST paradigm (Hammes et al., 2012). Each health
system promised to
• initiate advance care planning for each patient long before a medi-
cal crisis occurs,
• skillfully assist each willing patient with an individualized planning
process,
• ensure that any plans created are clear and complete,
• have plans available to the health professionals who may partici-
pate in decision making when the patient is incapacitated, and
• follow plans appropriately and respect the values and preferences of
the patient as allowed by law and organizational policy (Hammes,
2003, p. 2).
Making such a program work effectively requires embedding advance

care planning in the community’s larger health system to enable profes-
sionals to communicate and collaborate on making improvements, cre-
ating ongoing monitoring and feedback loops for quality improvement,
and sustaining the effort with ongoing financial support and staff training
(Hammes, 2003). Two years after the implementation of the Respecting
Choices program, a study found that among 540 decedents, 85 percent
had a written advance directive, which in almost all cases (95 percent)
was found in the patient’s medical record (Hammes and Rooney, 1998).
In general, treatment preferences captured in the directives were followed
when end-of-life treatment decisions were made. Accomplishing all this
requires “nothing less than a cultural shift in the health care sector”
(in der Schmitten et al., 2011, p. 8).
An early review of Respecting Choices describes six ways in which
this program differs from conventional advance care planning initiatives,
which help account for its success in achieving care in greater accord with
patient wishes:
• It treats advance care planning as an ongoing process, not as an

event designed to produce a product.

• It shifts the focus of end-of-life decision making away from docu-

ment completion and toward facilitating discussion of values and
preferences.
• It shifts the locus of planning from hospitals and physicians to the
community and family.
• It does not assume the physician is crucial to the process, but pro-
motes extensive training of nonphysician community volunteers.
• It refocuses discussion of preferences away from autonomy and
toward personal relationships, for example, by asking the question,
“How can you guide your loved ones to make the best decisions
for you?”.
• It works with hospitals and area physician offices to ensure that
completed advance directives are available in patients’ charts
(Prendergast, 2001, p. N37).
The LaCrosse initiative has been used as a model for advance care
planning programs for specific settings and populations, such as nursing
homes (in der Schmitten et al., 2011), and for patients with advanced
chronic illnesses, such as heart failure, who may be experiencing disease
complications or frequent hospitalizations (Schellinger et al., 2011; see also
Annex 3-1). Respecting Choices leader Bernard Hammes (2003) describes
several barriers to implementation that must be overcome if the program
is to be successfully replicated. First is the need to allow sufficient time to
train health professionals and discussion facilitators. At the time Hammes
was writing, the program recommended a 14-hour training program for fa-
cilitators and had found efforts to shorten this time unsuccessful. Hammes
(2003) also cites as barriers the need to make the necessary system changes
that establish advance care planning as the routine way to offer care and
the need for funding for the costs of the program. Hammes acknowledges
as well that transferring this model to more culturally diverse regions of
the United States would be a challenge because a highly diverse population
makes it more difficult to normalize the advance care planning conversa-
tion. In addition, many older people are accustomed to thinking of advance
directives as “living wills”—a one-time recording of their wishes intended
solely to preserve autonomy. They need to understand the new program’s
more organic, discussion-based approach that evolves over time with clini-
cal situations and health status.
Electronic Health Records

Electronic storage of advance directives, statements of wishes, health
care proxies, or other relevant materials—either in the patient’s electronic

BOX 3-3
New York State’s eMOLST
New York State’s eMOLST program is an example of well-coordinated elec-

tronic documentation of advance care choices. eMOLST is a secure Web-based
application that clinicians can use with patients. The application’s standardized
clinical process emphasizes shared, informed decision making in completing the
eMOLST form. In addition, a Chart Documentation Form provides details about
the eMOLST discussion, including information on patients’ values, beliefs, and
goals for care; capacity determination; and the framework for making MOLST
decisions, based on who makes the decision and where it is made, in accordance
with New York State’s Public Health Law.
eMOLST forms are created as pdf documents, which can be printed out for
patients to keep and for insertion in paper-based medical records. The forms can
also be stored or linked in electronic health records. Thus, the forms and sup-
porting documentation are accessible regardless of whether an electronic health
record is in use.
In addition, the forms become part of the state’s eMOLST registry, an elec-
tronic database that allows for ready round-the-clock availability of eMOLST
forms and the detailed Chart Documentation Form. With this system, health care
providers, including emergency personnel, can have access to eMOLST forms
and supporting documentation at any time or place.
SOURCES: Compassion and Support, 2013, 2014b, undated-a.
health record or an external database—holds promise for solving some cur-

rent problems with these documents. An example is described in Box 3-3.
A 2013 telephone survey of New York nursing homes found that al-
most 58 percent had implemented eMOLST, while 61 percent indicated
interest in the program. A similar survey of hospices in the state found that
38 percent had implemented eMOLST, while 44 percent were interested. A
similar survey of hospitals is under way.34
In theory, electronic systems should facilitate finding advance planning
documents when critical decisions must be made. If records use a standard
template, it may be easier to locate the relevant information to determine
whether current care preferences are reflected in the medical record (Yung
et al., 2010). According to Wilson and colleagues (2013, p. 1093), “Stan-
dardization is a fundamental prerequisite for efficient production and ef-
fective delivery of services,” and electronic systems can—although they do
34
Personal communication, P. A. Bomba, Community Conversations on Compassionate
Care, 2013.

not always—achieve standardization. Another potential advantage of hav-

ing advance directives in electronic health records is that they can remind
clinicians to inquire whether patients’ care preferences have changed and
whether they wish to update the identity and contact information for their
health care agent. For example, Partners Health System has pioneered an
innovative and complete electronic health record module that supports
appropriate discussion and documentation of end-of-life planning (Block,
2013). The module includes areas for documenting individuals’ preferences
for receiving information about their illness, their understanding of their
illness, and their goals and fears. Some of the other diverse and innovative
ways in which clinicians and institutions are using electronic means to sup-
port advance care planning are described in Table 3-7.
Currently, however, there are some gaps in practice. Not all advance
directive registries are linked to patients’ electronic health records. In ad-
dition, while electronic health records have increased the documentation
of advance directives, they have resulted in “an increase in inaccurate
TABLE 3-7 Selected Examples of the Use of Electronic Health Records

and Other Technologies to Support End-of-Life Planning
Example Outcome
Discharge summary template in the Given a modest incentive payment and
electronic health record to include care feedback, clinicians recorded this information
wishes expressed and health care agent for more than 90% of patients discharged,
(Lakin et al., 2013) compared with 12% of clinicians not offered
these inducements.
Various models providing an electronic Some models (such as New York’s eMOLST)
registry for 24-hour access to POLST also enable completion of standardized forms
forms and related documents (Zive and that can be integrated into patients’ electronic
Schmidt, 2012) health records.
Web-based systems for education A Nevada pilot ended because of low usage
about end-of-life choices, forms and and budget cuts; more than 5,000 accounts
assistance in their completion, and were created for a Texas repository in its first
document storage (Klugman and 3 years, and it was appreciated for its “ease
Usatine, 2012) of use.”
Interactive computer program that In preliminary stages; a pilot shows the
helps users clarify values and goals and computer program had good reliability in
record care preferences (Schubart et representing patients’ general wishes and
al., 2012) preferences.
Advance directive module in patient In preliminary stages; there is growing interest
portals, alongside modules encouraging in and use of portals by patients.
personal management of health (Bose-
Brill and Pressler, 2012)

advance directive documentation from labeling errors made in transfer of

information to the [electronic health record],” and systems of advance care
planning and electronic health records have not yet been well coordinated
(Bose-Brill and Pressler, 2012, p. 286). For example, EpicCare is one of
the principal electronic health record systems adopted by U.S. health care
providers. A study of the availability of advance care planning documents
(including living wills, POLST forms, information about health care agents,
and do-not-resuscitate orders) was conducted among active patients in
EpicCare’s ambulatory care electronic health record system (Wilson et al.,
2013). The study found that, while 51 percent of those aged 65 and older
had such a document, only about one-third of their records included a
scanned document—the only type that includes signatures, which are re-
quired to make them legally valid. Minority patients were less likely to have
a scanned document. Additional problems included a lack of standardiza-
tion in where in the record advance care planning information is recorded,
thwarting easy retrieval, and a time lag between completion of advance care
planning documents and their appearance in the electronic record.
Under the Health Information Technology for Economic and Clinical
Health (HITECH) Act,35 Medicare and Medicaid have provided significant
financial incentives for hospitals and physicians to engage in “meaningful
use” of certified electronic health record technology (CMS, 2014). To receive
these payments, physicians and hospitals must show they are “meaningfully
using” electronic records to achieve certain specific objectives established
by the Centers for Medicare & Medicaid Services. Thus far, the data stan-
dards related to advance care planning have been minimal, applying only
to hospital patients aged 65 and older, but the evolution of meaningful use
offers possibilities for expansion in various core areas, such as patient edu-
cation and patient engagement. As noted earlier in this chapter, the ACA’s
meaningful use provisions for electronic health records do not require, and
the major commercial electronic health records do not provide for, robust
documentation of advance care planning, including advance directives,
POLST, or information about designation of and contact information for a
health care agent. Meaningful use stage 2 includes as an objective only to
“record whether a patient 65 years old or older has an advance directive”
(CMS, 2012c, p. 1); further, this is not considered a “core” objective, and
it is relevant only for eligible hospitals and critical access hospitals, not for
eligible professionals (CMS, 2012d,e). Final recommendations from the
Health Information Technology Policy Committee for meaningful use stage
3 maintained this stage 2 objective; however, the policy committee is now
35 Health Information Technology for Economic and Clinical Health (HITECH) Act, Title
XIII of Division A and Title IV of Division B of the American Recovery and Reinvestment Act
of 2009 (ARRA), Public Law 111-5, 111th Cong., 1st sess. (February 17, 2009).

recommending that it be a core objective for eligible hospitals and a menu

objective for eligible professionals (HHS, 2014). (See also the discussion of
research needs related to electronic health records in Chapter 5, as well as
that chapter’s recommendation.)
A PROPOSED LIFE CYCLE MODEL OF

ADVANCE CARE PLANNING
As reflected in the standards of the National Framework and Preferred
Practices for Palliative and Hospice Care Quality (NQF, 2006), discussed
earlier, good advance care planning is not a one-time event, but should
occur at appropriate decision points throughout life, roughly as detailed
below (Benson and Aldrich, 2012; Bomba, 2005). The following life cycle
model of advance care planning is based on these standards and practices,
findings from the extant literature reviewed in this chapter, and the com-
mittee’s expertise and expert judgment. Considering the aspects of advance
care planning throughout the life cycle continuum normalizes the process
and aims to avoid the emotional burden sometimes experienced by patients,
families, and loved ones who have not adequately prepared for making
end-of-life care decisions. This proposed model has implications for quality
improvement programs, clinician training, public and patient education,
and payment systems.
Milestone-Specific
Under the life cycle model proposed by the committee, an initial con-
versation about values and life goals is held at some key maturation point—
such as obtaining a driver’s license, turning 18, leaving home to go to school
or into the military, or marriage (milestones when risks may change or the
locus of responsibility shifts):
• The presumption is that the person is generally healthy and men-

tally competent, but like everyone is at risk for acute illness or in-
jury and sudden (and possibly temporary) loss of capacity to make
medical decisions.
• The purpose of the conversation at this point is to help normalize
the advance care planning process by starting it early, to identify
a health care agent, and to obtain guidance in the event of a rare
catastrophic event.
• The consultation might be performed by a trained counselor, ad-
vanced practice nurse, physician assistant, or social worker.

Situation-Specific
Additional discussion of values and life goals is held, for example,
with people in high-risk occupations; those involved in high-risk activities,
including military training or deployment; and those with major genetic or
congenital issues:
• Again, the presumption is that the person is in good health.

• The purpose is to ensure that a health care agent has been desig-
nated and to take into consideration any family issues (e.g., spouse,
children).
• The consultation might be performed by a trained counselor, ad-
vanced practice nurse, physician assistant, or social worker.
As Part of Primary Care

Regular and periodic conversations are held with patients who do not
have a serious disease regarding their values, goals, and preferences:
• This conversation can be led by a nonphysician.

• The choice of health care agent should be reviewed.
Initial Diagnosis of Chronic Illness (Disease Management)

Further discussion takes place at the initial diagnosis of a chronic life-
limiting illness (although the end-point still may be years out):
• A physician should explain the diagnosis, the likely course of the

illness, complications to watch for, and ways to slow the disease’s
progression.
• A nonphysician can ensure that a health care agent is named and
encourage a conversation about what it means to be an agent and
what patient-agent discussions should take place.
As Health Worsens (Case Management)

Discussion also takes place at turning points in the disease (major
treatment changes; significant side effects or “turns for the worse”; onset
of comorbidities):
• Members of the care team can participate in these discussions,

which should also include the designated health care agent. As the

disease worsens, family members may benefit from counseling and

practical advice. Spiritual counseling can be offered.
• Patient and family should be asked how much information they
want about prognosis and what to expect.
In the Final Year of Expected Life

Discussion takes place again when death would not be a surprise if it
occurred in the next year:
• The opportunity for thoughtful POLST discussions is offered to

increase the likelihood that preferences for care and treatment are
accessible and honored.
• A “palliative care time out”—a required family meeting after a
patient has been in intensive care for a certain number of days—is
held so that everyone stops and reconsiders what is being done and
why.
• Members of the interdisciplinary health care team work with the
family and health care agent to support their role and potentially
forestall complicated bereavement.
• Members of the interdisciplinary health care team obtain help for
the family with practical matters.
Special Considerations for Seriously Ill Children

Children transitioning from childhood to adulthood should choose a
health care agent. For minors with decision-making capacity near the end
of life, according to the NQF standard, the child’s views and preferences
for medical care, including assent for treatment, should be documented and
given appropriate weight in decision making (NQF, 2006; Dahlin, 2013).
When the child’s wishes differ from those of the adult decision maker, ap-
propriate professional staff members should be made available for consulta-
tion and intervention.
RESEARCH NEEDS
A large body of research exists on advance directives—whether they
have been created, whether they have been followed, and what impact
they have on important outcomes of care. This literature is a principal
reason that the usefulness of simple checkbox-style documents has come
into question. Much less research has been conducted on the effective-
ness of more thorough advance care planning conducted over time and
tailored to immediate decisions as needed, as in the life cycle model de-

scribed above. Also needed is further investigation into how advances in

thinking about shared decision making and behavioral economics can be
applied specifically in end-of-life situations. A focus on preparing people
for in-the-moment decision making, rather than specifying exact treatment
preferences, holds promise as well. With respect to the POLST paradigm
and other community-wide efforts to encourage advance care planning,
the research challenge is one of developing and validating best practices to
ensure the integrity of these program models as they are diffused to other
settings. Likewise, investigations should be initiated to determine the most
effective ways in which electronic health records can support advance care
planning.
Decision-making theory points to the various means used by individu-
als to arrive at important decisions; the stages of change theory described
in this chapter is one such model. A better understanding of patient and
family decision-making styles might help clinicians work with their patients
more effectively and lead to decisions most relevant and appropriate to each
patient. In addition, more information is needed on the way the care system
respects, responds to, and sometimes shapes the decisions of patients and
whether or in what ways this is affected by race, gender, income, literacy,
insurance status, or other factors. Findings from such research should be
useful in improving communication between clinicians and the full range
of patients they serve. This type of research might lead to the development
of appropriate decision supports as well.
Specific research needs include investigation into the effectiveness of
strategies for advance care planning (versus advance directives) and their
effects on achieving concordance with patients’ informed preferences and
quality of care. Specific needs relate also to
• the development of guidelines for pediatric and adolescent advance

care planning;
• continued research toward understanding children’s involvement in
end-of-life decision making and comparative effectiveness studies
of different approaches to decision support and communication;
• understanding of racial, ethnic, and cultural differences in advance
care planning among nursing home residents;
• best practices and needs for different Asian, Hispanic, and South
Asian populations;
• ways to improve shared decision making;
• the significance of and strategies for implementing choice architec-
ture in advance care planning programs; and
• the most effective and cost-effective designs for financial incentives
and reimbursement for clinicians to participate in advance care

planning, recognizing that doing so takes time and may require

repeated consultations.
Findings and Conclusions

This study yielded the following findings and conclusions on alignment
of the care patients receive with the care they want.
Decision-Making Capacity
Most people nearing the end of life are not physically, mentally, or
cognitively able to make their own decisions about care. Approximately
40 percent of adult medical inpatients, 44-69 percent of nursing home
residents, and 70 percent of older adults facing treatment decisions are
incapable of making those decisions themselves. Furthermore, the majority
of these patients will receive acute hospital care from physicians who do not
know them. As a result, advance care planning is essential to ensure that
people receive care that reflects their values, goals, and preferences (Kim et
al., 2002; Nelson et al., 2006; Raymont et al., 2004; Silveira et al., 2010).
Comfort-Focused Care Versus Acute Care

People who capture their preferences for care near the end of life most
commonly, but not always, choose care that is focused on alleviating pain
and suffering. Because the default mode of treatment is acute care in the
hospital, however, a higher prevalence of advance care planning and medi-
cal orders will be more likely to achieve patient preferences (Billings, 2012;
Mack et al., 2010b; Wright et al., 2008).
Implementation of Patient Wishes

Most people, even those who are older and have serious illnesses, do
not complete advance directives, and even when these documents are com-
pleted, they rarely affect treatment decisions. They often are unavailable or
difficult to interpret, and they may contradict the preferences of the family
or clinicians. On the other hand, people who have had conversations about
end-of-life care values, goals, and preferences (although they may not have
completed formal advance directive documents) are less likely to receive
unwanted treatment. Advance care planning should be considered a life-
long process. Health care agents should be identified early in this process,
and for people with advanced serious illnesses, POLST forms should be

used (Ditto et al., 2006; Fried et al., 2007; Hammes et al., 2012; Hickman
et al., 2011; Kelley et al., 2011; NQF, 2006). However, most people—
particularly younger, poorer, minority, and less educated individuals—do
not have conversations about end-of-life care. Clinicians need to recognize
the multiple barriers to effective communication on these issues, initiate
the conversation themselves, and take time and make the effort to ensure
that patient and family decisions are made with adequate information and
understanding (Clements, 2009; Curtis and Engelberg, 2011; Phipps et al.,
2003; Sudore et al., 2010; Volandes et al., 2008a; Waite et al., 2003).
Lack of Clinician Communication Skills

The quality of communication between clinicians and patients who
have advanced serious illnesses or are nearing death falls far short of the
ideal, particularly with respect to discussing prognosis, dealing with emo-
tional and spiritual concerns, and finding the right balance between hoping
for the best and preparing for the worst. Advance care planning will not
succeed without improved communication generally. Incentives, quality
standards, and system support for the time required to conduct such con-
versations are necessary to promote improved communication that meets
the standards expected by patients and families (Anderson et al., 2008;
Back et al., 2003; Dias et al., 2003; Epstein and Street, 2007; NQF, 2006;
Smith et al., 2013b).
Recommendation 2. Professional societies and other organizations

that establish quality standards should develop standards for clinician-
patient communication and advance care planning that are measur-
able, actionable, and evidence-based. These standards should change as
needed to reflect the evolving population and health system needs and
be consistent with emerging evidence, methods, and technologies. Pay-
ers and health care delivery organizations should adopt these standards
and their supporting processes, and integrate them into assessments,
care plans, and the reporting of health care quality. Payers should tie
such standards to reimbursement, and professional societies should
adopt policies that facilitate tying the standards to reimbursement,
licensing, and credentialing to encourage
• all individuals, including children with the capacity to do so, to

have the opportunity to participate actively in their health care
decision making throughout their lives and as they approach death,
and receive medical and related social services consistent with their
values, goals, and informed preferences;
• clinicians to initiate high-quality conversations about advance care

planning, integrate the results of these conversations into the ongo-

ing care plans of patients, and communicate with other clinicians
as requested by the patient; and
• clinicians to continue to revisit advance care planning discussions
with their patients because individuals’ preferences and circum-
stances may change over time.
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Zhang, B., A. A. Wright, H. A. Huskamp, M. E. Nilsson, M. L. Maciejewski, C. C. Earle,
S. D. Block, P. K. Maciejewski, and H. G. Prigerson. 2009. Health care costs in the last
week of life: Associations with end of life conversations. Archives of Internal Medicine
169(5):480-488.
Zheng, N. T., D. B. Mukamel, T. Caprio, S. Cai, and H. Temkin-Greener. 2011. Racial dispari-
ties in in-hospital death and hospice use among nursing home residents at the end-of-life.
Medical Care 49(11):992-998.
Zier, L. S., P. D. Sottile, S. Y. Hong, L. A. Weissfeld, and D. B. White. 2012. Surrogate deci-
sion makers’ interpretation of prognostic information: A mixed-methods study. Annals
of Internal Medicine 156(5):360-366.
Zilberberg, M. D., and A. F. Shorr. 2012. Economics at the end of life: Hospital and ICU
perspectives. Seminars in Respiratory and Critical Care Medicine 33(4):362-369.
Zive, D. M., and T. A. Schmidt. 2012. Pathways to POLST registry development: Lessons
learned. http://www.polst.org/wp-content/uploads/2012/12/POLST-Registry.pdf (accessed
October 2, 2013).

ANNEX 3-1:
ADVANCE CARE PLANNING IN THE CONTEXT
OF COMMON SERIOUS CONDITIONS
For each of the four common serious conditions described in this ap-
pendix, all of which are leading causes of death in the United States, the
failure to provide palliative care—important components of which are the
setting of treatment goals and effective communication among patient, fam-
ily, and clinicians—is a major shortcoming in the quality of care.
Heart Failure
Heart failure was the primary cause of more than 56,000 deaths in
the United States in 2009 and was a contributing cause in 1 of every 9
deaths (274,000 deaths) (Go et al., 2013). About half of people who have
heart failure die within 5 years of diagnosis (CDC, 2013a). The condition
accounts for some 800,000 hospital admissions through the emergency
department each year (Collins et al., 2013).36
Patients and families need good counseling so they understand the
specific end-of-life quandaries raised by heart failure. These include the
disease’s unpredictability and the considerable risk of sudden death, which
heightens the need to designate a health care agent and specify the circum-
stances under which permanent pacemakers or defibrillators should be
deactivated (Shah et al., 2013).
A comprehensive review of almost 25 years of medical literature found
little evidence of discussions between health care professionals and heart
failure patients regarding care preferences, disease progression, or future
care options (Barclay et al., 2011). The authors note the frequent lack of
agreement between doctors and patients/family members regarding whether
such discussions had occurred and the information that was exchanged (see
also DesHarnais et al., 200737; Kirkpatrick et al., 2007). Although some
of these studies involved relatively small numbers of patients, consistent
findings were that heart failure patients
• have mixed views about having these conversations, with some

wanting a great deal of information and some wanting no details
about their condition; and
36 Heart failure hospitalizations are considered an ambulatory care–sensitive condition by
the federal Agency for Healthcare Research and Quality: http://www.qualitymeasures.ahrq.

gov/content.aspx?id=38562 (accessed December 16, 2014).
37 The study by DesHarnais and colleagues (2007) involved 30 patients with heart failure
(42 percent of the study population), as well as 41 patients with terminal cancer diagnoses.

• are most likely to want such conversations when they are unwell
and in the hospital (a time when they may be least able to process
information effectively).
In addition, health care professionals
• find establishing a diagnosis and prognosis for heart failure dif-

ficult, which complicates the task of explaining the condition to
patients in a way that is not frightening and determining the ap-
propriate timing for the discussion (Barclay et al., 2011);
• do not know patient preferences for pain control and place of death
and the financial/religious considerations that factor into those
preferences (DesHarnais et al., 2007); and
• tend to focus on immediate concerns of disease management, in-
stead of viewing heart failure as a terminal illness (Barclay et al.,
2011).
The articles reviewed by Barclay and colleagues (2011) indicate that

patients value clinicians’ communication skills, although many cardiology
professionals believe they lack such skills. Clinicians’ time pressures and
manner and patients’ reluctance to ask questions are among the identified
barriers to conversation on these issues.
A heart failure–specific advance care planning model was tested in a
Midwest health system (Schellinger et al., 2011). The model used the Re-
specting Choices program, discussed earlier in this chapter, and included
a facilitated, in-depth interview with patients and their family/health care
agents. Discussion tools completed during the disease-specific advance care
planning interviews were scanned into patients’ electronic health records.
The study found no significant difference between patients among whom
the model was used and a control group with respect to inpatient and emer-
gency department admissions, although among patients who died, those
who had completed their advance care planning were more than twice as
likely to have been enrolled in hospice. The health system’s management
was sufficiently encouraged by this study’s effectiveness in recruiting pa-
tients and achieving completion of advance directives to expand training in
the model, improve the visibility of advance care planning information in
the electronic health record, and continue implementation efforts.
Chronic Obstructive Pulmonary Disease (COPD)

COPD is the cause of significant morbidity and mortality worldwide
(WHO, 2014). In the United States, it is the third leading cause of death
(CDC, 2012), and accounted for 715,000 hospitalizations in 2011, ap-

proximately 65 percent of which were among adults aged 65 and older

(American Lung Association, 2013). Like heart failure, COPD is a frequent
cause of emergency hospitalizations, is progressive, has frightening and dis-
abling symptoms (principally severe shortness of breath and anxiety), has
an unpredictable trajectory, is associated with multiple comorbidities, and
is a not infrequent cause of sudden death.
Few patients with COPD have discussed their end-of-life preferences
with their physician (Heffner, 2011; Patel et al., 2012), and many do not
know they have a life-limiting illness or even what that illness is (Gardiner
et al., 2009). The barriers to greater advance care planning discussions
resemble those for other medical conditions, with the added difficulty of
multiple COPD phenotypes and multiple associated comorbid conditions
that can affect the disease’s course (Heffner, 2011; Patel et al., 2012).
Patients with COPD have given physicians low marks with respect to
discussing the specific issues of prognosis, what dying might be like, and
spirituality and religion, while at the same time acknowledging their general
communication skills (willingness to listen and address patients’ questions
and concerns) (Curtis et al., 2004). Communication about care planning
typically occurs in the crisis situation of an intensive care unit rather than
in the primary care physician’s office, with each discipline believing the
conversation is someone else’s responsibility (Gott et al., 2009).
COPD’s acute exacerbations followed by partial recovery “lull physi-
cians into thinking [advance care planning] can wait until a future date
and clouds the definition of what constitutes ‘end of life’ because points
of transition are so poorly recognizable” (Heffner, 2011, p. 105). In this
unpredictable disease, models for in-the-moment decision making may be
more useful than discussions about future preferences based on hypothetical
outcomes (Patel et al., 2012).
Mental health issues that characterize COPD (and many other chronic,
progressive conditions) further complicate advance care planning discus-
sions. The link between cigarette smoking and COPD stimulates feelings of
remorse, shame, and guilt, which decrease patients’ motivation for engag-
ing in advance care planning and suggest a need for psychological support
and possible psychotherapeutic treatment (Heffner, 2011; Lindqvist and
Hallberg, 2010).
Depression and anxiety are relatively common in chronic diseases, and
are linked to increased health care utilization and higher disability rates.
Depression also affects patients’ choices about care and “leads to social
isolation and loneliness, which are also experienced by patients’ family
caregivers,” who may stop encouraging them to engage in advance care
planning (Heffner, 2011, p. 106).

Cancer
Most of the research on advance care planning for patients with spe-
cific diseases has been conducted among patients with cancer, which is
responsible for more than 500,000 U.S. deaths per year (CDC, 2013b).
“Cancer is an emotionally laden, often disruptive, and sometimes tumultu-
ous experience for patients, families and providers” (Walling et al., 2008,
p. 3896). For that reason alone, an essential aspect of good oncology care
is good communication about the disease, its path, and choices for treat-
ment (Trice and Prigerson, 2009). (See also the section of this chapter on
handling emotional encounters.)
Advance care planning is recommended for patients with cancer at
several specific points: at diagnosis, at any subsequent key time when goal-
oriented discussions are appropriate (e.g., when invasive procedures or new
chemotherapy regimens are contemplated, when neurological symptoms or
brain metastases appear, or upon admission to an intensive care unit), and
before an expected death (Walling et al., 2008). Guidelines from the Na-
tional Comprehensive Cancer Network and the National Consensus Project
for Quality Palliative Care recommend that physicians have an advance
care planning discussion with any patients who have “incurable” cancer
and an expected life span of less than 1 year (Bomba and Vermilyea, 2006;
Dahlin, 2013; NCCN, 2013).
Treatment preferences of patients with advanced cancer often are un-
expressed and undiscussed (Mack et al., 2010b), and care often reflects
“the prevailing styles of treatment in the regions and health care systems
where they happen to receive cancer treatment” (Goodman et al., 2013,
p. 1). If these discussions occur, evidence from large studies suggests they
tend to occur late in the disease trajectory, when patients already are in
decline, and during acute hospital admissions, whereas they might better
be accomplished during less stressful outpatient visits (Mack et al., 2012).
However, patients who have end-of-life discussions of any kind are
more likely than those who do not to receive care in accordance with their
wishes, especially when those discussions take place relatively early in the
course of the illness (Goodman et al., 2013). Compared with patients who
do not have these discussions, those who do, as well as patients who un-
derstand they are terminally ill, are more likely to receive end-of-life care
consistent with their preferences (Mack et al., 2010b). Those who have end-
of-life discussions also have lower rates of ventilation, resuscitation, and
admission to the intensive care unit and are more likely to enroll in hospice
earlier; early hospice enrollment is associated with improved patient and
caregiver quality of life (Wright et al., 2008).
Despite these benefits, while some people “set limits on the amount
of discomfort and treatments they will accept,” others “want all possible

treatments to prolong life, regardless of discomfort” (Byock, 2013, p. 7).

Ironically, it is possible that choosing intensive or life-extending treatment
in the face of advanced disease does not always increase longevity (e.g.,
Mack et al., 2010b). In a highly regarded randomized controlled trial of
early introduction of palliative care in metastatic lung cancer,38 survival
was actually longer in the patients who received palliative care and less
chemotherapy (Temel et al., 2010).
The degree to which patients want to discuss end-of-life matters var-
ies among individuals and families, over time, and in the face of changing
circumstances, so that “the information preferences of a particular patient
cannot be reliably predicted by demographic, cultural, or cancer-specific
factors” (Russell and Ward, 2011, p. 191). Doctors are not accurate at
guessing what those preferences will be; they must ask, although evidence
suggests that this does not occur systematically. Mack and colleagues
(2012) found that medical oncologists documented end-of-life discussions
with only about one-quarter of their patients.
Dementias
Alzheimer’s disease is the sixth leading cause of death in the United
States and was the direct cause of more than 83,000 deaths in 2010 (CDC,
2013b), although pneumonia or other manifestations of frailty often are
listed as the cause of death for people with Alzheimer’s disease and de-
mentia. Estimates are that nearly one-half of Americans aged 85 and older
have Alzheimer’s disease (CDC, 2011). More than one-half of patients with
Alzheimer’s disease (54 percent) lack decision-making capacity, and deci-
sions about their care eventually end up being made by their health care
agents or surrogates (Sessums et al., 2011).
Dementia differs from many other cognitive impairments in that the
people afflicted went through a lifetime of making decisions and acquired
the inability to continue doing so only with advancing age or the appear-
ance of other chronic conditions. Thus, there presumably was a period of
many years during which people with dementia would have been capable
of expressing preferences for treatment.
Dementias are also different from many other conditions in that they
typically are progressive. Huntington’s disease, for example, is a progressive
neurodegenerative disorder for which there is no disease-altering treatment
and that eventually results in institutionalization. Because of the pattern
of erratic and impulsive behavior early in the disease, those afflicted often
38
In the Temel et al. (2010) study, palliative care specifically included the advance care
planning activities of establishing goals of care and assisting with decision making regarding
treatment.

lose the support of friends or family, and patients have difficulty express-
ing themselves verbally. In a study involving 53 specialized nursing home
residents with Huntington’s disease, one-quarter of the patients (or their
representatives) requested cardiopulmonary resuscitation (Dellefield and
Ferrini, 2011). By contrast, a study of 323 nursing home residents found
that when health care agents understood the patient’s poor prognosis and
the clinical complications typical in advanced dementia, they were much
less likely to authorize burdensome interventions, such as hospitalization,
emergency room visits, tube feeding, or intravenous therapy (Mitchell et al.,
2009). In this study, fewer than one in three of the health care agents had
been counseled by a physician about these complications; even fewer (18
percent) had received prognostic information from a physician.

ANNEX 3-2:
OREGON PHYSICIAN ORDERS FOR
LIFE-SUSTAINING TREATMENT (POLST) FORM

HIPAA PERMITS DISCLOSURE TO HEALTH CARE PROFESSIONALS & ELECTRONIC REGISTRY AS NECESSARY FOR TREATMENT
Physician Orders for Life-Sustaining Treatment (POLST)

Follow these medical orders until orders change. Any section not completed implies full treatment for that section.
Patient Last Name: Patient First Name: Patient Middle Name: Last 4 SSN:
Address: (street / city / state / zip): Date of Birth: (mm/dd/yyyy) Gender:

/ / M F
CARDIOPULMONARY RESUSCITATION (CPR): Unresponsive, pulseless, & not breathing.
A  Attempt Resuscitation/CPR
Check If patient is not in cardiopulmonary arrest,
One  Do Not Attempt Resuscitation/DNR follow orders in B and C.
MEDICAL INTERVENTIONS: If patient has pulse and is breathing.
B  Comfort Measures Only. Provide treatments to relieve pain and suffering through the use of any
Check
One medication by any route, positioning, wound care and other measures. Use oxygen, suction and
manual treatment of airway obstruction as needed for comfort. Patient prefers no transfer to
hospital for life-sustaining treatments. Transfer if comfort needs cannot be met in current location.
Treatment Plan: Provide treatments for comfort through symptom management.
 Limited Treatment. In addition to care described in Comfort Measures Only, use medical treatment,
antibiotics, IV fluids and cardiac monitor as indicated. No intubation, advanced airway interventions,
or mechanical ventilation. May consider less invasive airway support (e.g. CPAP, BiPAP). Transfer
to hospital if indicated. Generally avoid the intensive care unit.
Treatment Plan: Provide basic medical treatments.
 Full Treatment. In addition to care described in Comfort Measures Only and Limited Treatment,
use intubation, advanced airway interventions, and mechanical ventilation as indicated. Transfer to
hospital and/or intensive care unit if indicated.
Treatment Plan: All treatments including breathing machine.
Additional Orders: _________________________________________________________________
ARTIFICIALLY ADMINISTERED NUTRITION:
C  Long-term artificial nutrition by tube.
Offer food by mouth if feasible.
Additional Orders (e.g., defining the length
Check
One  Defined trial period of artificial nutrition by tube. of a trial period):________________________
 No artificial nutrition by tube. _______________________________________
D DOCUMENTATION OF DISCUSSION: (REQUIRED) See reverse side for add’l info.

Must
Fill Out
 Patient (If patient lacks capacity, must check a box below)
Health Care Representative (legally appointed by advance directive or court)

Surrogate defined by facility policy or Surrogate for patient with developmental disabilities or
significant mental health condition (Note: Special requirements for completion- see reverse side)
Representative/Surrogate Name: _________________________________Relationship: ____________________
E PATIENT OR SURROGATE SIGNATURE AND OREGON POLST REGISTRY OPT OUT

Signature: recommended This form will be sent to the POLST Registry unless the
patient wishes to opt out, if so check opt out box:
F ATTESTATION OF MD / DO / NP / PA (REQUIRED)
By signing below, I attest that these medical orders are, to the best of my knowledge, consistent with the patient’s
Must
Print current medical condition and preferences.
Name, Print Signing MD / DO / NP / PA Name: required Signer Phone Number: Signer License Number: (optional)
Sign &
Date
MD / DO / NP / PA Signature: required Date: required Office Use Only
S E N D F O R M W I T H P AT I E N T W H E N E V E R T R AN S F E R R E D O R D I S C H AR G E D
S U B M I T C O P Y O F B O T H S I D E S O F F O R M T O R E G I S T R Y I F P AT I E N T D I D N O T O P T O U T I N S E C T I O N E
© CENTER FOR ETHICS IN HEALTH CARE, Oregon Health & Science University. 2014

HIPAA PERMITS DISCLOSURE TO HEALTH CARE PROFESSIONALS & ELECTRONIC REGISTRY AS NECESSARY FOR TREATMENT
Information for patient named on this form PATIENT’S NAME:

The POLST form is always voluntary and is usually for persons with serious illness or frailty. POLST records your wishes
for medical treatment in your current state of health (states your treatment wishes if something happened tonight). Once
initial medical treatment is begun and the risks and benefits of further therapy are clear, your treatment wishes may
change. Your medical care and this form can be changed to reflect your new wishes at any time. No form, however, can
address all the medical treatment decisions that may need to be made. An Advance Directive is recommended for all
capable adults and allows you to document in detail your future health care instructions and/or name a Health Care
Representative to speak for you if you are unable to speak for yourself. Consider reviewing your Advance Directive and
giving a copy of it to your health care professional.
Contact Information (Optional)
Health Care Representative or Surrogate: Relationship: Phone Number: Address:
Health Care Professional Information

Preparer Name: Preparer Title: Phone Number: Date Prepared:
PA’s Supervising Physician: Phone Number:
Primary Care Professional:
Directions for Health Care Professionals

Completing POLST
• Completing a POLST is always voluntary and cannot be mandated for a patient.
• An order of CPR in Section A is incompatible with an order for Comfort Measures Only in Section B (will not be accepted in Registry).
• For information on legally appointed health care representatives and their authority, refer to ORS 127.505 - 127.660.
• Should reflect current preferences of persons with serious illness or frailty. Also, encourage completion of an Advance Directive.
• Verbal / phone orders are acceptable with follow-up signature by MD/DO/NP/PA in accordance with facility/community policy.
• Use of original form is encouraged. Photocopies, faxes, and electronic registry forms are also legal and valid.
• A person with developmental disabilities or significant mental health condition requires additional consideration before completing the
POLST form; refer to Guidance for Health Care Professionals at www.or.polst.org.
Oregon POLST Registry Information
Health Care Professionals: Registry Contact Information: Patients:
(1) You are required to send a copy of both Mailed confirmation packets from Registry
sides of this POLST form to the Oregon Phone: 503-418-4083 may take four weeks for delivery.
POLST Registry unless the patient opts Fax or eFAX: 503-418-2161
out. www.orpolstregistry.org MAY PUT REGISTRY ID STICKER HERE:
(2) The following sections must be [email protected]
completed:
• Patient’s full name Oregon POLST Registry
3181 SW Sam Jackson Park Rd.
• Date of birth
Mail Code: CDW-EM
• MD / DO / NP / PA signature Portland, Or 97239
• Date signed
Updating POLST: A POLST Form only needs to be revised if patient treatment preferences have changed.
This POLST should be reviewed periodically, including when:
• The patient is transferred from one care setting or care level to another (including upon admission or at discharge), or
• There is a substantial change in the patient’s health status.
If patient wishes haven’t changed, the POLST Form does not need to be revised, updated, rewritten or resent to the Registry.
Voiding POLST: A copy of the voided POLST must be sent to the Registry unless patient has opted-out.
• A person with capacity, or the valid surrogate of a person without capacity, can void the form and request alternative treatment.
• Draw line through sections A through E and write “VOID” in large letters if POLST is replaced or becomes invalid.
• Send a copy of the voided form to the POLST Registry (required unless patient has opted out).
• If included in an electronic medical record, follow voiding procedures of facility/community.
For permission to use the copyrighted form contact the OHSU Center for Ethics in Health Care at [email protected] or (503) 494-3965.
Information on the Oregon POLST Program is available online at www.or.polst.org or at [email protected]
S E N D F O R M W I T H P AT I E N T W H E N E V E R T R AN S F E R R E D O R D I S C H AR G E D , S U B M I T C O P Y T O R E G I S T R Y
© CENTER FOR ETHICS IN HEALTH CARE, Oregon Health & Science University. 2014


Professional Education and Development
Education of health professionals who provide care to people nearing

the end of life has improved substantially in several areas since the Institute
of Medicine (IOM) reports Approaching Death (IOM, 1997) and When
Children Die (IOM, 2003) were published. Most notably, hospice and pal-
liative medicine has become established as a defined medical specialty, with
10 cosponsoring certification boards. Despite this progress, however, major
educational deficiencies remain with respect to end-of-life care.
This chapter begins by summarizing progress made in professional
education with respect to end-of-life care since the above two IOM reports
were issued, as well as deficiencies that remain. It then describes impedi-
ments to teaching all physicians and nurses about palliative care. Remov-
ing these impediments would enhance basic palliative care as provided by
clinicians who are not hospice and palliative medicine specialists. Next, the
chapter describes the roles and preparation of palliative care team mem-
bers, including specialists in palliative care in the professions of medicine,
nursing, social work, pharmacy, and chaplaincy; rehabilitation therapists
and direct care workers are also discussed. The chapter ends with the com-
mittee’s findings, conclusions, and recommendation on creating change in
professional education.
PROGRESS AND CONTINUING NEEDS

When Children Die recommends creating and testing end-of-life care
curricula and educational experiences for all health care professionals who
work with children and families, as well as specialty clinicians and palliative
221

care specialists (IOM, 2003). Approaching Death includes a recommenda-

tion to raise palliative medicine to specialty or near-specialty status. The
report’s recommendation 5 says, in part, “Palliative care should become, if
not a medical specialty, at least a defined area of expertise, education, and
research” (IOM, 1997, pp. 9, 12; see also pp. 224-227). This important
recommendation has been realized with the board certification of thousands
of hospice and palliative medicine specialists drawn from other disciplines.
Palliative care specialties have been developed as well for advanced prac-
tice nurses and registered nurses. A palliative care specialty has emerged in
social work, and another is under way in chaplaincy. Nearly 100 hospice
and palliative medicine fellowship programs, with the capacity to graduate
some 200 fellows annually, have gained accreditation. Similar gains have
occurred in nursing and social work. Clinical experiences in hospital-based
palliative care and outpatient hospice have become more widely available.
Other areas of progress include the following:
• Faculty preparation—Increasing numbers of faculty members have

palliative care credentials. Since Approaching Death was pub-
lished, important efforts to train faculty have included the Faculty
Scholars Program for physicians and nurses and the Social Work
Leadership Development Awards, both initiatives of the Open Soci-
ety Institute’s Project on Death in America (Open Society Institute,
2004). Such efforts have also included the End of Life/Palliative
Education Resource Center (Medical College of Wisconsin, un-
dated) and faculty recognition through the U.S. Department of Vet-
erans Affairs (VA) Faculty Leader Project for Improved Care at the
End of Life (Stevens et al., 1999). Two major ongoing continuing
education programs—the Education in Palliative and End-of-life
Care program and End-of-Life Nursing Education Consortium—
together have trained thousands of physicians and nurses through
a train-the-trainer approach.
• Medical education—Medical students today have greater exposure
than before to end-of-life knowledge and skills in medical schools.
Education in palliative care is offered in 99 percent of U.S. medical
schools, usually as part of another course, and all medical schools
offer some type of instruction on death and dying, although the
average total instruction is a mere 17 hours in the 4-year curricu-
lum (Dickinson, 2011). In a 2013 annual survey conducted by the
Association of American Medical Colleges, nearly 80 percent of
graduating medical students deemed the instruction they received

PROFESSIONAL EDUCATION AND DEVELOPMENT 223
in palliative care and pain management appropriate, and about 20

percent thought it inadequate (AAMC, 2013).1
• Professional infrastructure—As reflected in many of the sources
cited in this report, important research on palliative care has been
published in first-tier journals, and several new peer-reviewed jour-
nals on palliative care have been launched. Moreover, the number
of active organizations dedicated to the advancement of palliative
care, partly through the setting or promotion of standards, has
grown and now includes the American Academy of Hospice and
Palliative Medicine, the Center to Advance Palliative Care, the
National Hospice and Palliative Care Organization (formerly the
National Hospice Organization), the Hospice and Palliative Nurses
Association, and the Social Work Hospice and Palliative Care
Network.
• Knowledge base—Major gains have been made in the knowledge
base of palliative care. These gains are evidenced in palliative care
textbooks (e.g., in medicine, Hanks et al. [2009] and Bruera et al.
[2009]; in nursing, Ferrell and Coyle [2010]; and in pediatrics,
Hinds et al. [2010], Wolfe et al. [2011], and Carter et al. [2011]),
as well as in increased palliative care content in nonspecialty texts.
Despite these gains, however, two important deficiencies persist. First,

these knowledge gains have not necessarily been matched by the transfer of
knowledge to most clinicians caring for people with advanced serious ill-
nesses. As was true at the time Approaching Death was published in 1997,
the topic of death and dying does not have a strong presence in the medical
school curriculum. Similarly, in the care of very sick children, many family
physicians, pediatricians, and their counterparts and colleagues in nursing
and social work have developed an expertise in palliative care, but the
overall pattern of inattention to palliative and end-of-life care observed in
When Children Die still appears to predominate in the pediatric world. To
illustrate, a 2003 survey of 49 pediatric residents at the Children’s Hospital
of Pittsburgh found “minimal training, experience, knowledge, competence,
and comfort in virtually all areas of palliative care for children,” with no
significant improvement in any of these areas from the first to the third year
of training (Kolarik et al., 2006, p. 1952). Other studies have also found
that physicians and other health professionals continue to experience mini-
1 By contrast, in an earlier telephone survey of 1,751 U.S. medical students and residents,
two-fifths said they felt unprepared to address dying patients’ fears, to manage their own
feelings about patients’ deaths or help bereaved families, and to teach end-of-life care, and
nearly half said dying patients were not considered good teaching cases (Sullivan et al., 2003).

mal or no training in palliative care for the pediatric population (Liben et

al., 2008; Rapoport et al., 2013; Serwint et al., 2006).
The second major remaining deficiency involves the limited number
of palliative care specialists. As noted in a later section of this chapter, ap-
proximately 6,500 physicians are board certified in hospice and palliative
medicine. In 2010, the national shortage in this specialty was estimated to
be between 6,000 and 18,000 physicians (Lupu and American Academy
of Hospice and Palliative Medicine Workforce Task Force, 2010). In one
sense, this shortage estimate could be interpreted as too high because it
was based on a supply of only 4,400 palliative care specialists and on a
model of demand reflecting staffing levels at “exemplar” institutions.2 In
another sense, the estimate could be interpreted as too low because it was
not population based (or empirically determined). Moreover, it rested on an
apparent assumption that people do not need, and present no demand for,
specialty palliative care services outside of institutional settings.
However, many people outside of institutional settings do need what in
this report is termed basic palliative care (see Box 1-2 in Chapter 1). Basic
palliative care is vital because hospice and palliative medicine specialists
will never be sufficient in number to provide regular face-to-face treatment
of every person with an advanced serious illness. Hospice and palliative
medicine specialists supplement, and do not replace, the palliative care
services of clinicians in primary care and disease-oriented specialties.
I am a family physician who provides end-of-life care in a rural

setting for patients, both at a nursing home and in their personal
homes. As difficult as these situations can be, as medical providers
we can provide a great deal of comfort walking patients and fami-
lies through these end-of-life events by detailing how the events
normally transpire. More important, though, is that we are able to
provide mental and spiritual care for the patient and family. Once
the patient and family realize they are in an end-of-life situation,
they are almost always open to care options to help make the dying
process meaningful and physically comfortable for the patient.*
2 In the cited study, the “exemplar” institutions used in modeling demand included three hos-
pices and one academic medical center, and the estimate was based on the Center to Advance
Palliative Care’s recommended staffing level of one hospice and palliative medicine physician
for every 12 patients (CAPC, 2014; Lupu and American Academy of Hospice and Palliative
Medicine Workforce Task Force, 2010).

BOX 4-1
Domains of Clinical Competence in End-of-Life Care
Scientific and clinical knowledge and skills

• Symptom control and medication management
• Patient assessment and caregiver assessment
• Physical and emotional symptoms
• Advance care planning
Interpersonal skills and knowledge

• Communication
• Respecting patient and family choices (overlap with ethics)
Ethical and professional principles

• Doing good
• Avoiding harm
• Respecting patient and family choices (overlap with interpersonal skills)
Organizational skills
• How the clinician interacts with the system
Approaching Death (IOM, 1997) and When Children Die (IOM, 2003)
specify the same four domains of clinical competency in palliative care: sci-
entific and clinical knowledge; interpersonal skills and knowledge, ethical
and professional principles, and organizational skills. These domains are
as relevant today as they were when those earlier reports were produced.
Box 4-1 summarizes these domains.
IMPEDIMENTS TO CHANGING THE CULTURE

OF CARE THROUGH EDUCATION
Health professions education can help transform the care of people
with advanced serious illnesses. Indeed, far-reaching changes in how physi-
cians, nurses, and other health professionals are educated and trained may
be necessary to effect that transformation.
In the committee’s judgment, three impediments in health professions
education and development have obstructed coordination, compassion, and
choice in end-of-life care. Interacting with each other, these impediments
reinforce a general inadequacy in preparing physicians, nurses, and other
health professionals to provide basic palliative care, and overcoming them

would greatly improve the palliative care landscape. The three impediments
are as follows:
• Curriculum deficits: The usual curricula of medical and nursing

schools contain too little content on palliative care. Many physi-
cians and nurses have entered practice with only a limited under-
standing of palliative care and generally are ill equipped to meet
patients’ basic palliative care needs.
• Lack of interprofessional collaboration: Education for medical
professionals takes a generally siloed approach, whereas palliative
care requires an interdisciplinary, team-based approach. Having
been educated separately, physicians, nurses, and other health pro-
fessionals have not had the opportunity to develop teamwork skills
and attitudes.
• Neglect of communication skills: Communication skills are ne-
glected in both the undergraduate (medical school) and graduate
(internships, residencies, and fellowships) education of physicians,
as well as in the preparation of nurses and other health professionals.
Curriculum Deficits
Undergraduate and Graduate Medical Education

In a major advance, the Liaison Committee on Medical Education
now requires accredited U.S. and Canadian medical schools to teach end-
of-life care.3 To the extent that this policy is carried out, nearly all future
physicians will be at least somewhat prepared to practice basic palliative
care. However, the Liaison Committee’s requirement is vague—it does not
specifically mention palliative care, for example—and it does not appear
to be rigorously enforced through specific standards or clear expectations.
Perhaps partly as a consequence, end-of-life care, including principles and
practices of palliative care and hospice and palliative medicine, still is not
taught widely and intensively in U.S. medical schools.
As noted above, palliative care usually is offered only as part of another
course. In a 2008 survey on palliative care in 128 U.S. medical schools, only
47 responded, and just 14 of these had a required course (Van Aalst-Cohen
et al., 2008). A recent review found an “absence of sufficient formal class-
room and clinical instruction” in palliative care and concluded that most
3 Liaison Committee on Medical Education standard ED-13 states, in full: “The curriculum
of a medical education program must cover all organ systems, and include the important
aspects of preventive, acute, chronic, continuing, rehabilitative, and end-of-life care” (Liaison
Committee on Medical Education, 2013, p. 10). This policy was initiated in 2000.

medical students learn about the subject largely informally, through “the
‘hidden’ curriculum.”4 In these authors’ view, this hidden content often
presents negative messages, such as “death is a medical failure,” and there
is no reason to assign students to dying patients because there is “nothing
to learn” from them (Horowitz et al., 2014, p. 63).
When palliative care is taught, results can be impressive. A review
of nine studies published in 1996-2006 found “a wide range of format
structures and curriculum content,” but the author notes that all of the
studies “demonstrate that end-of-life educational curricula and clinical
training improve the competency of medical students” (Bickel-Swenson,
2007, pp. 233-234). A qualitative assessment of the reflective written com-
ments of 593 third-year medical students before and after taking a 32-hour
didactic and experiential clerkship that included home hospice visits and
inpatient hospice care found a 23 percent improvement in knowledge, a
56 percent improvement in students’ feelings of competence, and a 29 per-
cent decrease in their concerns (von Gunten et al., 2012).
Other examples of how hospice and palliative medicine content has
been incorporated into medical school curricula include
• George Washington University’s standardized patient case on pal-

liative care in the second year, coupled with a course on medical
interviewing and decision making;
• the University of Rochester’s content on advance care planning,
chronic pain management, and discussion of treatment goals pro-
vided in the first and second years, supplemented by a session on
palliative care in a 2-week follow-up to a clinical rotation in the
third year (Shaw, 2012);
• development of a 4-year integrated curriculum and establishment
of an Office of Palliative Care by Northeast Ohio Medical Univer-
sity (Radwany et al., 2011); and
• the Association of American Medical Colleges’ collaboration with
the Coalition to Transform Advanced Care to identify relevant core
competencies.5
4 The “hidden curriculum” is expressed through institutional policies, evaluation activities,

resource allocations, and institutional “slang,” among other means (Hafferty, 1998). For
further discussion and a personal view, see Liao (2014).
5 Core competencies in geriatric education, identified by the Association of American Medi-
cal Colleges with support from the John A. Hartford Foundation, include some aspects of
hospice and palliative medicine: pain management; the importance of interdisciplinary care;
and psychological, social, and spiritual needs of patients with advanced serious illness and
their families (Leipzig et al., 2009; see also Sanchez-Reilly and Ross, 2012, p. 118).

The need for a systematic approach to medical schools’ commitment to

hospice and palliative medicine has been described as follows:
An educationally rich palliative care curriculum should include didactic
and clinical experiences where learners observe the role-modeling of com-
petent and compassionate palliative care and have supervised experiential
opportunities. Improvements within individual schools/residencies still
largely rely on the presence of an effective palliative medicine champion
who combines commitment and vision, leadership skills, education skills,
and clinical skills. To provide meaningful clinical experiences for learners
and to mainstream palliative medicine[,] it is crucial to provide faculty
development in primary palliative care skills to non-HPM faculty to ensure
care for the growing population of complex chronically and seriously ill
people. (Sanchez-Reilly and Ross, 2012, p. 120)
The structures of academic medical centers and cancer centers typi-

cally are rooted in more established specialties, impeding the ability of
hospice and palliative medicine specialists to become educators. These
structures also fail to facilitate interprofessional training. What appears
to be needed is a core of board-certified hospice and palliative medicine
specialists serving in appropriate departments or divisions as educators
of medical students and residents and as liaisons with colleagues in other
professions, especially nursing, social work, and chaplaincy. A few efforts
have been made to train medical school faculty members in palliative care.
The annual 2-week Program in Palliative Care Education and Practice at
Harvard Medical School was rated as “transformative” by 82 percent of
respondents who participated in 2000-2003 (Sullivan et al., 2005). The
shortage of hospice and palliative medicine faculty may in part reflect the
low levels of funding for palliative care research noted in Chapter 2, with
faculty members’ ability to attract research dollars being a high priority for
medical schools.
One way to ensure attention to hospice and palliative medicine in the
undergraduate curriculum, in graduate training, and in the minds of fu-
ture physicians is to include more of this content in medical licensure and
specialty board certification examinations. Currently, little hospice and
palliative medicine content appears in the main licensure test, Step 3 of
the United States Medical Licensing Examination. As the final phase of the
physician licensure examination process, Step 3 centers on biomedical and
clinical science and is open to all medical and osteopathic school graduates
who have passed Steps 1 and 2. Authoritative content outlines provide an
overview, or “blueprint,” of the content for 15 areas of the Step 3 examina-
tion (United States Medical Licensing Examination, 2013). Although a few
test questions related to specific disorders conceivably involve the terminal
phases of illness, there is no blueprint for end-of-life care.

Sufficient hospice and palliative medicine content is also lacking in

many board certification examinations in specialties in which basic pal-
liative care is especially relevant. In oncology, end-of-life care and com-
munication combined are only 2 percent of the entire examination (ABIM,
2013a). The closest thing to hospice and palliative medicine content in the
cardiovascular recertification examination, taken by current cardiologists
and other cardiovascular disease practitioners, is a topic called “ethics,
malpractice, other” within a “miscellaneous” portion of the exam content
that is only 1.5 percent of the entire examination (ABIM, 2013b). In the
certification examination for general internal medicine, “palliative/end-of-
life care” is 3 percent of the examination content (ABIM, 2013c).
Continuing Medical Education

Because many or most physicians have had little exposure to hospice
and palliative medicine in their undergraduate and graduate education, ef-
forts have been made to fill the gap through continuing medical education.
Most notably, a program originally named Education for Physicians on
End-of-life Care (EPEC) was developed in the late 1990s by the American
Medical Association with support from the Robert Wood Johnson Founda-
tion. EPEC has reached many physicians and other professionals through
small-group training sessions and has as its mission “to educate all health-
care professionals in the essential clinical competencies of palliative care”
(EPEC, 2013b).
EPEC uses a train-the-trainer approach to disseminate knowledge and
improve skills. Participants rated the project highly from the beginning,
and 92 percent of 200 physicians participating in EPEC training in 1999-
2000 reported that they used its content in their teaching (Robinson et al.,
2004). Since being renamed Education in Palliative and End-of-life Care,
EPEC has developed numerous learning modules and now disseminates
them through various venues—conferences, online learning, and specialized
training, with didactic sessions, videotape presentations, interactive discus-
sions, and practical exercises (CAPC, 2013). Nurse practitioners and other
nonphysicians also take advantage of EPEC, making it an interdisciplinary
training platform.
Illustrating EPEC’s current scope, EPEC-Pediatrics has 23 core and 2
elective topics, taught through 20 distance learning modules and 6 1-day,
in-person conference sessions (EPEC, 2013a). Since 2012, physicians and
nurse practitioners have participated in “Become an EPEC-Pediatrics
Trainer” workshops.6 Caregivers, emergency medicine, long-term care, on-
6 Personalcommunication, S. Friedrichsdorf, Children’s Hospitals and Clinics of Minnesota,

February 6, 2014.

cology, and veterans are among the many other subjects of EPEC training.
EPEC has become essentially self-sustaining through participation fees, and
it partners with diverse professional associations and other organizations,
such as the National Cancer Institute (NCI, 2013).
Legislation in the state of California requires that most physicians ob-
tain 12 hours of continuing education in pain management and end-of-life
care.7 State legislatures or medical licensing boards sometimes do require
that physicians, as a condition of periodic relicensure, take continuing edu-
cation courses on specified, socially pressing topics, although it is not clear
that such continuing education mandates are effective in changing practice
patterns.8 However, among 81 physicians taking a course complying with
the California requirement, two-thirds of 51 immediate respondents re-
ported an interest in changing their practice patterns, and most (90 percent)
of 31 respondents reported 4 months later that their practice patterns had
indeed changed (Leong et al., 2010).
Interdisciplinary formats are a common feature of continuing education
in communication related to end-of-life care. At Children’s Hospital Boston,
physicians participated with nurses, social workers, psychologists, and
chaplains involved in pediatric critical care in a day-long interprofessional
communication program (the Program to Enhance Relational and Com-
munication Skills, or PERCS). The program was created by the Institute for
Professionalism and Ethical Practice. In a survey of 110 participants, 106
responded immediately, and 57 of these returned a follow-up questionnaire
5 months later. Respondents were nearly unanimous in indicating that the
course improved their skills and confidence in communication (Meyer et
al., 2009).
In some cases, continuing education requirements may limit patient
care. In 2012, for example, the U.S. Food and Drug Administration (FDA)
adopted a risk evaluation and mitigation strategy for prescribing more
than 30 extended-release and long-acting opioid analgesic medications
that “strongly encourages” prescribers to take a continuing medical educa-
tion course on opioid prescribing (FDA, 2013). The FDA supports making
this education mandatory and linking it to prescriber registration with
the Drug Enforcement Administration (American Pharmacists Association,
2012; FDA, 2013). Although prescribers of these frequently abused drugs
certainly should be aware of the attendant risks (see IOM, 2011, pp. 142-
7 California AB487 (2001), Cal. Bus. & Prof. Code, sec. 2190.5. This is a one-time require-
ment. Pathologists and radiologists are exempt. Exemptions may also be granted to physicians
who are not engaged in direct patient care, do not provide patient consultations, or do not
reside in California.
8
For a meta-analysis of the outcome literature on continuing medical education, see
Mansouri and Lockyer (2007).

148),9 such a requirement might dissuade some clinicians from prescribing

opioids at all, thereby limiting the availability of an important pain relief
modality for people with advanced serious illnesses.
Nursing Education
Accreditation standards for undergraduate baccalaureate nursing pro-
grams, adopted by the American Association of Colleges of Nursing in
2008, specify that all baccalaureate nursing graduates should be prepared
to “implement patient and family care around resolution of end-of-life and
palliative care issues, such as symptom management, support of rituals,
and respect for patient and family preferences” (AACN, 2008, p. 31). This
mandate is analogous to the Liaison Committee on Medical Education
standard noted above.
Historically, the lack of emphasis on palliative care seen in medical
education appears to have been duplicated in nursing education. For ex-
ample, registered nurse anesthetists received little training in palliative or
end-of-life care as students, and a literature search involving preparation
of certified registered nurse anesthetists found “no publications addressing
the importance of incorporating elements of palliative care into nursing and
nurse anesthesia practice” (Callahan et al., 2011, p. S15).
Oncology nurses were found to be so consistently distressed when com-
municating with patients and families about end-of-life care that develop-
ment of a communication curriculum was considered necessary for use in
early palliative care (Goldsmith et al., 2013). An examination of palliative
care education for pediatric nurses showed that nurses entering practice
“often were grossly unprepared to care for children and families in need of
end-of-life care” (Malloy et al., 2006, p. 555). However, a survey of 279
pediatric nurses in Florida found “a good level of baseline knowledge of
palliative care” (Knapp et al., 2009, p. 432), especially in cities with a pe-
diatric palliative care program (Knapp et al., 2011).10 In a 2006 survey in
which 71 percent of baccalaureate nursing schools participated, 99 percent
reported some offering on death and dying, but on average, these totaled
less than 15 hours of instruction (Dickinson, 2007).
Several organizations have joined forces to train nursing school faculty
and potential nursing mentors in palliative care. The End-of-Life Nursing
Education Consortium (ELNEC) was initiated in 2000 with 4 years’ sup-
9 In a 2014 state of the state address devoted entirely to problems of addiction, Vermont
Governor Peter Shumlin said that treatment for opiate addiction in his state increased by 770
percent, to 4,300 cases (or 1 in about every 150 residents), between 2000 and 2012 (Seelye,
2014). Nationwide opioid overdoses tripled in 20 years, causing 15,500 deaths in 2009 (CDC,
2013).
10 A “concept analysis” of pediatric palliative nursing care is provided in Stayer (2012).

port from the Robert Wood Johnson Foundation. The ELNEC program is
administered by the American Association of Colleges of Nursing and City
of Hope National Medical Center. The National Cancer Institute began to
train graduate nursing faculty members using ELNEC in 2002. ELNEC
content consists of eight modules,11 and participants receive a textbook,
a 1,000-page syllabus, and other resource materials. More than 15,000
nurses and others, an estimated 11,500 of whom are nurse educators, had
received ELNEC training by 2013. Besides the core ELNEC training, sepa-
rate courses exist for oncology, pediatrics, critical care, geriatrics, veterans,
public hospitals, and advanced practice registered nursing (ELNEC, 2013).
Examples exist in which palliative care is integrated into the undergrad-
uate nursing curriculum. At the University of Rochester School of Nursing,
topics roughly conforming to the eight ELNEC modules are included in
a core end-of-life curriculum, and a hospice and palliative care elective is
offered (University of Rochester Medical Center, 2013). At the University
of California, San Francisco, School of Nursing, a course in palliative and
end-of-life care recently became mandatory for many of the school’s pro-
grams (Schwartz, 2012). In a very different approach, one nursing school
offers a course on palliative and end-of-life care structured around three
apprenticeships—in cognitive learning, clinical reasoning and know-how,
and moral reasoning (Hold et al., 2014).
A major textbook in palliative nursing is divided into general prin-
ciples, symptom assessment and management, the meaning of hope in the
dying, spiritual care, special patient populations, end-of-life care across set-
tings, pediatric palliative care, special issues for the nurse in end-of-life care,
international models of palliative care, and a conclusion on a good death
(Ferrell and Coyle, 2010). Another textbook is divided into caring for the
whole person, social and professional issues, psychosocial considerations,
and physical aspects of dying (Matzo and Sherman, 2010).
Schools of Public Health

Medical and nursing schools are not the only health professions educa-
tion venues that find little room in their curricula for end-of-life and pallia-
tive care. In 2011-2013, only 3 of the 49 accredited U.S. schools of public
health offered a course on end-of-life care policy. Another 6 public health
schools offered some content on end-of-life concerns, but most of these
offerings embedded this content in courses on aging policy and so did not
consider the entire life span (Lupu et al., 2013). A curriculum on the topic
11 The eight ELNEC modules are nursing care at the end of life; pain management; symptom
management; ethical/legal issues; cultural considerations in end-of-life care; communication;

loss, grief, and bereavement; and preparation for and care at the time of death.

has been developed under the auspices of the Foundation for Advanced
Education in the Sciences at the National Institutes of Health, but it appar-
ently has not been widely adopted.
Public health courses on end-of-life care could help lead future health
care administrators and policy makers and their educators to incorporate
principles of palliative care into health care systems. To illustrate, local,
state, and national population health strategies could emphasize the quality
of life of people with advanced serious illnesses, promote palliative care in
health professions education, provide assistance to family caregivers, and
ensure greater availability of bereavement services.
Cross-Cutting Considerations
As a clinical field in which communication is exceptionally important,
palliative care lends itself to education approaches other than didactic
lectures. Simulation techniques, experiential learning, role playing (with or
without outside actors), team-building exercises, interdisciplinary seminars,
use of social media, journal or research clubs, and other nontraditional or
supplemental methods of learning all may be appropriate in building stu-
dents’ knowledge and skills. Educational approaches could include clerk-
ships and other placements in hospices or other palliative or long-term care
settings, interviews and conversations with patients and families, case stud-
ies involving unwanted or futile treatment, an opportunity to accompany a
hospital chaplain on rounds, preparation and discussion of research papers,
telehealth or telemedicine demonstrations, and exploration of attitudes
toward health care in a minority community.
Perhaps more than most other clinical specialties, hospice and palliative
medicine calls on clinicians to be flexible and embrace uncertainty, espe-
cially in prognosis. Health professionals involved in either basic or specialty
palliative care must respond in timely and appropriate ways when advanced
disease trajectories take an unexpected path. Hospice and palliative medi-
cine’s focus on maximizing patient comfort and quality of life requires a
different mind-set on the part of the care team, and often, considerable
creativity.
Lack of Interprofessional Collaboration

The development of high-functioning teams of health professionals is
receiving increased attention. Forms of collaboration include interprofes-
sional, or multiple professions working together toward a common goal,
and transdisciplinary, or multiple professions working together under a
shared model with a common language (IOM, 2013a). In this report, the
term “interprofessional” education encompasses the concept of transdis-

ciplinary education. In these and other collaborative arrangements, physi-

cians and other participating health professionals subordinate their own
interests to the interests of the team and evince core humanistic values, such
as honesty and integrity, caring and compassion, altruism and empathy,
respect for others, and trustworthiness (IOM, 2013a; Swick, 2000).
Professional education can encourage or obstruct interprofessional col-
laboration. It can foster team-building skills, such as communication, and
important team-supporting attributes, such as trust and a focus on results.
George Thibault, president of the Josiah Macy Jr. Foundation, suggested
at a recent IOM workshop that team-based competencies should be a core
goal of health professions education, and a theme of that workshop was the
importance of leadership, including educational leadership, to effect such a
cultural change (IOM, 2013b).
In reality, however, most health professions education is siloed. Ac-
cording to a Macy Foundation report, for example, “medical education
inculcates physicians with a ‘captain of the ship’ attitude[,] which can im-
pair interprofessional collaboration” (Josiah Macy Jr. Foundation, 2011,
p. 6). Nursing education, too, is “very siloed,” relying on a preponderance
of theory classes unconnected to practical realities (IOM, 2010, p. 20).
According to authors of a nursing-oriented review of interprofessional edu-
cation, “Despite some successes in educating the different disciplines collab-
oratively, the degree of interdisciplinary education at present is insufficient
and sporadic. Within the nursing curriculum, the content for teamwork is
present, but the evidence for education of disciplines together is sparse”
(Newhouse and Spring, 2010, p. 2).
Interprofessional collaboration is a key feature of palliative care, which,
as emphasized in Chapter 2, is largely a team enterprise. Siloed education
fosters attitudes that can lead team members to struggle over jurisdictional
turf, misunderstand each other’s processes and objectives, fail to listen to or
anticipate the concerns of other disciplines, avoid collective responsibility,
and allow individual interests to interfere with patient and family interests.
Palliative care training, by contrast, “is oriented to teams rather than
individuals,” especially in Palliative Care Leadership Centers, established
in 2004 through the Center to Advance Palliative Care with initial sup-
port from the Robert Wood Johnson Foundation. These centers provide
education programs geared to eight types of health care settings,12 fol-
lowed by a year-long mentoring program. The education programs include
a core program, consultancy-based programs oriented to a developing
or recently established palliative care program, and a pediatrics program
12 The eight types of settings used by the leadership centers are integrated health systems,
community hospitals, hospices, academic medical centers, cancer centers, children’s hospitals,
U.S. Department of Veterans Affairs (VA) facilities, and safety-net hospitals (CAPC, undated).

(CAPC, undated). Further, interprofessional fellowships in palliative care

have been established by the VA as part of that agency’s commitment to
palliative care.
Neglect of Communication Skills

Clinicians’ skill in communicating with patients and families is a key
aspect of end-of-life and palliative care, as noted in Chapter 2 and dis-
cussed at length in Chapter 3. As a pair of palliative care experts recently
commented, “Foremost, clinicians and students in the health professions
need better training in basic palliative care competencies, especially com-
munication skills” (Block and Billings, 2014, p. 1700). Research on health
professionals’ communication skills has focused primarily on physicians,
for whom the need may be greatest. This section likewise focuses on the
development of physician communication skills, but the committee believes
that the development of these skills also is important for nurses and other
health professionals.
Effective physician communication in end-of-life situations has been
described as follows:
good communication in palliative medicine adopts a modern, patient-
centered, biopsychosocial-spiritual framework, and focuses on eliciting
patient concerns, identifying their agenda, providing complete informa-
tion, but doing so in a way that allows patients and families to digest what
they hear. It is respectful, empathic, inclusive, and efficient, seeks to elicit
patients’ goals and preferences, and to match these to an individualized
plan of care. (LeBlanc and Tulsky, in press)
These authors also observe that “communication behaviors are readily

measurable, teachable, and learnable” (LeBlanc and Tulsky, in press).
Hospice and palliative medicine specialists are not alone in needing
knowledge and skill in communicating with patients and families facing the
end of life. Primary care clinicians, of course, but also oncologists, cardi-
ologists, nephrologists, intensivists, emergency physicians, hospitalists, sur-
geons, and other clinicians must effectively sound out, listen, ask, inform,
come to agreement, comfort, and in other ways achieve communication
success with patients and family members as part of basic palliative care.
Even radiologists, anesthesiologists, pain specialists, and physical medicine
specialists have occasion to communicate effectively with patients with
advanced serious illnesses and their families.
Nonetheless, physician shortcomings in communication, especially an
apparent unwillingness to discuss the full range of treatment options for
people with advanced serious illnesses, are well documented. According
to Wright and colleagues (2008, p. 1672), “Physicians . . . often avoid

EOL [end-of-life] conversations, communicate euphemistically, are overly

optimistic, or delay discussions until patients are close to death.” Inter-
views with 196 physicians caring for 70 patients who died in a hospital
revealed that 86 percent of the physicians reported knowing death was
imminent, but only 11 percent reported personally speaking with patients
about the possibility of dying (Sullivan et al., 2007). Shah and colleagues
(2013) report that many cardiologists and primary care physicians do
not discuss options with patients with heart failure, partly out of a fear
of destroying hope.
A long line of studies has established that communication skills can
be taught effectively to physicians at numerous points in their educational
careers:
• A communication intervention course led internal medicine resi-

dents to significant improvements in delivering bad news (Alexander
et al., 2006).
• A communication training course led oncology fellows to improve-
ments in comfort level and skill with difficult conversations (Back
et al., 2003).
• Similarly, a course in teaching communication skills led medical
school faculty members to greater comfort level and skill in teach-
ing communication skills (Back et al., 2009).
• Seminal UK research showed that courses in communication skills
led senior oncologists to improvements in confidence and behavior
in communication, initially and at 3 and 12 months (Fallowfield et
al., 1998, 2002, 2003).
• Three weekly sessions with an expert facilitator and a simulated
patient or caregiver led “junior doctors” working in Australian
hospitals to improvements in communication skills and greater
confidence in communicating about end-of-life problems (Clayton
et al., 2013).
• A three-pronged approach led house officers in a medical intensive
care unit rotation to improvements in confidence in conducting
family conferences; delivering bad news; and discussing do-not-
resuscitate orders, comfort care, withdrawal of life-sustaining treat-
ment, and advance directives (Seoane et al., 2012).
• Instruction sessions on communication for first- and second-year
medical students at the Warren Alpert Medical School of Brown
University were rated highly by students for their effectiveness in
enhancing communication skills and helping students gain perspec-
tive on and appreciate the complexities of health care situations
(Shield et al., 2011).

Although these results show that good communication can be taught,

there appears to be a dearth of medical faculty members actually teaching
the subject. To fill this deficit, faculty training programs in communication
have emerged. One such program is Oncotalk Teach, offered to oncology
faculty through faculty retreats and distance learning (Back et al., 2009).
In another example, 33 physicians in diverse specialties at a comprehen-
sive cancer center participated in a communications workshop; afterward,
three-fourths reported feeling comfortable with facilitating training work-
shops in communication skills (Bylund et al., 2008).
Nevertheless, the medical literature offers a paucity of information
about medical schools’ efforts to redress students’ communication difficul-
ties (Wiskin et al., 2013), and many of these efforts appear to be relatively
modest. They include, for example, two communication interventions for
third-year students at the Yale School of Medicine: a 3.5-hour workshop in
communicating difficult news; and an assignment, including preparation of
a written report, on communication and other problems in a single patient’s
end-of-life care as part of a clinical clerkship (Ellman and Fortin, 2012).
Graduate medical education also does not typically emphasize devel-
opment of communication skills. In a survey of 89 pediatric residents, for
example, all but one said acquiring effective communication skills during
their residency was a priority, but only 19 percent felt confident in discuss-
ing end-of-life issues with patients and families, 23 percent felt confident in
speaking with children about serious illness, and 27 percent felt confident
in giving bad news (Rider et al., 2008).
Communication in the advance care planning context also is not widely
taught. To the extent that future physicians learn about advance care plan-
ning, the topic typically is covered in medical ethics courses, and according
to one group of researchers, “formal curricula on advance directives are not
commonly offered by residency programs.” These researchers conducted
a survey of 59 internal medicine and family medicine residents in Texas.
Nearly half of the respondents said they did not have “sufficient knowledge
of advance directives, given my years of training” (Colbert et al., 2010,
p. 280). Some new approaches are emerging. For example, a facilitated
quality improvement workshop for internal medicine residents increased
confidence with advance care planning for patients who were not English
proficient (Tung et al., 2013). Chapter 3 provides additional detail on com-
munication challenges, including those related to advance care planning.
ROLES AND PREPARATION OF PALLIATIVE

CARE TEAM MEMBERS
Palliative care team members include physician specialists in hospice
and palliative medicine, palliative nursing specialists, hospice and pallia-

tive care social workers, pharmacists, and chaplains. Others with impor-
tant roles include rehabilitation therapists, direct care workers, and family
members.
Physician Specialists in Hospice and Palliative Medicine

For patients who receive specialty (versus basic) palliative care, the
hospice and palliative medicine specialist is responsible for managing all
diagnostic and treatment services related to comfort and relief of symp-
toms. This role, although it differs somewhat from setting to setting, is
comparable to that of the hospice medical director, who, under the Medi-
care Hospice Benefit, “has responsibility for the medical component of the
hospice’s patient care program.”13
Because of their relatively low numbers, hospice and palliative medicine
specialists typically function as consultants rather than as direct care pro-
viders. Despite this predominantly consultative role, it appears reasonable,
in the committee’s view, for patients who are referred to specialty palliative
care services to expect to be seen by a qualified palliative care physician at
some point, similar to the expectation when a patient enrolls in hospice.
A personal encounter can help reassure patients that care is being well
managed and is truly patient-centered. Even the physician’s touch can be
reassuring (Verghese et al., 2011). Likewise, personal encounters enhance
physicians’ understanding of the patient’s condition and personality and
thereby potentially improve clinical decisions and coordination of care.
Following considerable growth in hospice and palliative medicine train-
ing over the past decade, there were 107 accredited fellowship programs
in 39 states plus the District of Columbia in the 2014-2015 academic year
(ACGME, 2014). What factors lead a physician to enter this field? In a
survey of 62 fellows conducted in July 2009, 63 percent said they did not
feel prepared to manage dying patients, and 41 percent felt regret about
the care they delivered. While 59 percent had no exposure to hospice and
palliative medicine in medical school, 61 percent were exposed to it during
residency training (Legrand and Heintz, 2012).
The increase in postgraduate training has been accompanied by changes
in the certification process for physicians seeking to demonstrate compe-
tence in this field. In the 10-year period ending in 2006, the American Board
of Hospice and Palliative Medicine certified more than 2,100 physicians
(NHPCO, 2006). Then in September 2006, the new field received formal
recognition when the American Board of Medical Specialties (ABMS) ap-
proved the creation of hospice and palliative medicine as a subspecialty.
At that point, physicians certified by the previous, less formal process
13 42 CFR 418.102(d).

received “grandfathered” certification status for a period of 10 years after

their initial certification. The ABMS examination has been offered every 2
years since 2008. In 2012, the examination pass rate was 82 percent, and
3,368 candidates passed (ABEM, 2013). Beginning in 2014, completion of
an accredited hospice and palliative medicine fellowship is a prerequisite
for certification.
ABMS sponsors the hospice and palliative medicine certification ex-
amination with the participation of 10 certification boards. As Table 4-1
shows, two boards—the American Board of Internal Medicine and Ameri-
can Board of Family Medicine—account for 88 percent of all certifications
among a total complement of about 6,400 hospice and palliative medicine
specialists.
To ensure continuing competence, the ABMS certification must be
renewed every 10 years. The recertification requirements of continuing
education, training, and examinations are similar to those of other ABMS
certifications. The recertification examination, administered by the Ameri-
can Board of Internal Medicine on behalf of all 10 cosponsoring boards, is
administered simultaneously to all eligible physicians.
For osteopathic physicians, the American Osteopathic Boards of Family
Medicine, Internal Medicine, Neurology and Psychiatry, and Physical Medi-
cine and Rehabilitation offer a Certificate of Added Qualification (and peri-
TABLE 4-1 Physicians Board-Certified in Hospice and Palliative

Medicine Through the American Board of Medical Specialties, by
Specialty Board, 2008-2012
Sponsoring Board Number Certified Percentage
Internal Medicine 3,974 62
Family Medicine 1,631 26
Pediatrics 210 3
Anesthesiology 111 2
Psychiatry and Neurology 104 2
Emergency Medicine 94 1
Obstetrics and Gynecology 68 1
Radiology 62 1
Surgery 62 1
Physical Medicine and Rehabilitation 40 1
TOTAL 6,356 100
SOURCES: Personal communication, S. McGreal, marketing and communications specialist,
ABMS, February 4, 2014; ABEM, 2013; ABFM, 2013; ABIM, 2013d; ABP, 2013; ABPMR,
2013; ABPN, 2013; ABS, 2013.

odic recertification) in hospice and palliative medicine. From 2009 to 2013,

all doctors of osteopathy (DOs) who obtained board certification in any
specialty were permitted to participate in the hospice and palliative medi-
cine osteopathic certification examination, but as of 2014, only candidates
from these four boards will be eligible. As of 2012, 174 DOs held osteo-
pathic certification in hospice and palliative medicine. This figure comprises
118 family physicians, 48 internists, 3 emergency physicians, 2 neurologist-
psychiatrists, 2 surgeons, and 1 physical medicine-rehabilitation specialist
(Gross and Bell, 2013). DOs also may qualify for ABMS certification.
The total number of physicians certified in hospice and palliative medi-
cine is not readily apparent. One source estimates there were 5,000 board-
certified hospice and palliative medicine specialists in 2013 (Quill and
Abernathy, 2013), but as Table 4-1 reveals, the actual number was at least
25 percent higher. Complications entailed in computing an accurate total
include the lack of data on how many physicians who became certified in
the pre-2006 process have not yet been certified through the ABMS process
but are still practicing. Taken together, however, data from Table 4-1 and
the osteopathic certification process suggest a total of more than 6,500
board-certified hospice and palliative medicine specialists in the United
States. This figure amounts to about 0.8 percent of all practicing U.S. phy-
sicians (KFF, 2014).
In May 2014, the Hospice Medical Director Certification Board admin-
istered the first certification exam directed explicitly at the unique clinical
and administrative skills and knowledge required in a hospice setting. With
no prerequisite fellowship for this focused certification, the aim is to raise
the bar for physicians who may work closely with hospices but are not
seeking extensive tertiary training (HMDCB, 2013).
One important dimension of the adequacy of the supply of hospice
and palliative medicine specialists is race/ethnicity. The committee did
not find data on the racial/ethnic composition of the nation’s supply of
board-certified hospice and palliative medicine physicians. In the survey
of 62 fellows noted at the beginning of this section, however, none were
African American (Legrand and Heintz, 2012). Greater success in recruit-
ing minority physicians into hospice and palliative medicine would likely
make palliative care more attractive and accessible to minority patients and
families (see Chapter 3) and would enhance cultural competence within the
specialty.
Hospice and Palliative Nursing Specialists

Nurses play especially vital roles in care at the end of life. One impor-
tant role is serving as a patient advocate, ensuring that patients and families
receive culturally sensitive care and sufficient pain management and relief

of other symptoms (Hebert et al., 2011). A review of 44 articles from 10

countries found that hospital nurses aid in the decision-making process near
the end of life by serving as information brokers, supporters, and advocates,
and have sets of strategies for accomplishing each of these roles. Additional
research would aid in understanding how these roles and strategies link to
patient and family member outcomes (Adams et al., 2011).
The goal of hospice and palliative care nursing “is to promote and
improve the patient’s quality of life through the relief of suffering along the
course of illness, through the death of the patient, and into the bereavement
period of the family” (ANA, 2010b, p. 5; ANA and HPNA, 2007, p. 1).
Palliative nurses who are registered nurses assess patients for their palliative
care needs, including relief of pain and other symptoms and spiritual and
social needs. They manage symptoms such as pain, anorexia/cachexia, con-
stipation, dehydration, nausea and vomiting, diarrhea, delirium, dyspnea,
lymphedema, ascites (accumulation of excess fluid in the peritoneal cavity),
pruritus (itching), various oral conditions, fatigue, and other conditions.
Further, they coordinate care, anticipate and attend to emergencies, and
provide psychosocial care (Bruera et al., undated). Coordination, commu-
nication with families, collaboration, and patient advocacy all character-
ize nursing—in palliative care, in end-of-life care, and in general (ANA,
2010a).
Nursing has seven different specialty certifications in palliative care as
offered by the National Board for Certification of Hospice and Palliative
Nurses, geared to different levels of education and areas of training and
experience. Nurses with the most training are the advanced certified hospice
and palliative nurses—nurse practitioners or clinical nurse specialists who
deliver care similar to that delivered by physician specialists in hospice and
palliative medicine. However, state scope-of-practice laws and regulations
may impose some restrictions on practice for these nurses, such as a require-
ment that advanced practice nurses have formal physician backup protocols
or strict limits on nurses’ prescribing authority.
The group with the least amount of training is the certified hospice and
palliative nursing assistants who provide bedside care, such as assistance
with activities of daily living, under the supervision of a registered nurse.
Certified nursing assistants help implement care plans, identify impacts on
quality of life, document patient and family responses, and demonstrate
other competencies (HPNA, 2009).
Table 4-2 summarizes all seven palliative nursing certification pro-
grams, which were established between 1994 and 2004. To ensure continu-
ing competence, they require recertification within 4 years (NBCHPN®,
2014).
Palliative nursing is an increasingly well-established field. An authorita-
tive roster of nursing education programs in palliative care lists 15 programs

TABLE 4-2 Nursing Certifications in Palliative Care

Number
Type of Certification Eligibility Certified*
Advanced certified hospice and Master’s degree in nursing 943
palliative nurse from an advanced practice
palliative care accredited
education program, or certain
equivalences
Certified hospice and palliative License to practice registered 11,878
nurse nursing; 2 years of experience
in hospice or palliative care
recommended
Certified hospice and palliative License to practice registered 160
pediatric nurse nursing; 2 years of experience
caring for children with life-
limiting illnesses recommended
Certified hospice and palliative Practical/vocational nursing 1,022
licensed nurse license; 2 years of experience
as a licensed practical nurse
in hospice or palliative care
recommended
Certified hospice and palliative 2,000 practice hours in hospice 3,843
nursing assistant or palliative care under
supervision of a registered
nurse in the past 2 years
Certified hospice and palliative 2 years of full-time experience 273
care administrator within the past 3 years in an
administrative role in an area
covered by the examination, or
equivalent
Certified in perinatal loss care Professional degree (such as 62
registered nurse) and 2 years of
full-time experience in the past
3 years in perinatal loss care
and/or bereavement support
*Numbers certified are current as of April 2014.
SOURCES: NBCHPN®, 2014; Personal communication, S. L. Schafer, director of certification,
NBCHPN®, February 5, 2014.
at the master’s or doctoral level, with the eastern, southern, midwestern,

and western regions of the country each being represented by at least two
programs (HPNA, 2013).
Reflecting growth in the specialty, the Hospice and Palliative Nurses
Association now claims 11,000 members, primarily hospice and palliative
nurses, such as certified hospice and palliative nurses. The association,

the certification board, and the Hospice and Palliative Nurses Foundation
have joined in the Alliance for Excellence in Hospice and Palliative Nurs-
ing, which advocates on behalf of the field. The alliance’s concerns include
patient access, ensuring patient choice, patient-centered interdisciplinary
care, acknowledgment of the role of nurses, and enabling advanced certified
hospice and palliative nurses to practice to the full extent of their training
instead of being restricted by state scope-of-practice laws (Alliance for Ex-
cellence in Hospice and Palliative Nursing, 2013). Another practice concern
is the low staffing levels in units that provide end-of-life care, which do not
take into account patients’ spiritual and emotional needs, the importance
of having a nurse at the bedside at the time of death, and a nurse’s need for
some respite after a patient dies (Douglas, 2012).
Hospice and Palliative Care Social Workers

The role of social workers in end-of-life care often focuses on self-
determination, including bioethics consultation and advance care plan-
ning. Additional competencies include resource linkage (such as discharge
planning), case management (for care coordination), and advocacy. Social
workers are particularly concerned about the end-of-life needs of vulner-
able individuals (NASW, 2004). They often are part of palliative care
teams in hospitals, nursing homes, and hospices, and even may work in
emergency departments (Lawson, 2012). Others work in social service
agencies to provide community-based social supports for patients and
families, such as assistance with transportation, income support, and en-
rollment in health plans.
In recent years, the profession of social work has developed standards,
certifications, and advanced levels of training for those providing support
to people approaching death:
• Since 2008, the National Association of Social Workers (NASW)

has offered specialty certification in hospice and palliative care at
the level of advanced certified hospice and palliative care social
worker for licensed social workers who hold a master’s degree in
social work, have at least 2 years’ experience in hospice and pallia-
tive care, and have acquired at least 20 hours of related continuing
education.
• Since 2009, certification at the level of certified hospice and pallia-
tive care social worker has been available to licensed social workers
who hold a bachelor’s degree in social work, have at least 3 years’
experience in hospice and palliative care, and have acquired at least
20 hours of related continuing education.

These two credentials are among 18 advanced practice specialty credentials

offered by NASW as of 2014. All require biannual renewal (NASW, 2014).
Another organization, the Board of Oncology Social Work Certifica-
tion, offers advanced specialty credentials for master’s degree social work-
ers involved in oncology. While oncology encompasses a separate specialty
from hospice and palliative care, this certification requires experience in
oncology, palliative care, or end-of-life care (Board of Oncology Social
Work Certification, 2014).
Partly with support from the Project on Death in America, many
colleges and universities have developed specific courses and postdegree
certificate programs for social workers in palliative and end-of-life care
(Walsh-Burke and Csikai, 2005). That project was also instrumental in
establishing the Social Work Hospice and Palliative Care Network, an
ongoing enterprise “created to bridge the gaps in social work’s access to
information, knowledge, education, training, and research in hospice and
palliative care” (Social Work Hospice and Palliative Care Network, 2014).
The network was partly a product of two Social Work Summits on End-of-
Life and Palliative Care, held in 2005 and 2006 (Blacker et al., undated).
Many hospice and palliative care social workers practice in hospice.
Under the Centers for Medicare & Medicaid Services’ hospice conditions of
participation, hospice social workers must hold a master’s degree in social
work; hold a bachelor’s degree in social work and have 1 year of experi-
ence in a health care setting; or hold a bachelor’s degree in a related social
science discipline, have 1 year of experience in a health care setting, and
work under the supervision of a social worker holding a master’s degree
in social work (CMS, 2008, Section 418.114(b)(3)). In a survey of 1,169
hospice and palliative care social workers, most reported being engaged
in communicating the psychosocial needs of patients and families to other
members of the care team and in assessing patients’ and family members’
grief and bereavement needs; few held NASW certification (Weisenfluh and
Csikai, 2013).
NASW’s Standards for Palliative and End of Life Care cover ethics
and values; knowledge; assessment; intervention/treatment planning; at-
titude and self-awareness; empowerment and advocacy; documentation;
interdisciplinary teamwork; cultural competence; continuing education;
and supervision, leadership, and training (NASW, 2004). A major textbook
in social work palliative care includes sections on specific settings of care,
components of practice (screening, assessment, intervention), population-
specific practice, collaboration, “Regional Voices from a Global Perspec-
tive,” ethics, and professional issues (Altilio and Otis-Green, 2011).

Pharmacists
The role of pharmacists in palliative care and hospice includes
• assessing the appropriateness of medication orders and helping to

ensure the timely administration of effective medicine,
• counseling and educating other palliative care team members about
medication therapy,
• educating patients and family caregivers about the administration
and use of medications,
• ensuring the availability of compounding of unusual medications,
• addressing patient and family financial concerns relating to
medications,
• ensuring safe and legal disposal of medications after death, and
• communicating with regulatory authorities as appropriate (ASHP,
2002).
Given that symptom management for people who have advanced seri-
ous illnesses or are nearing the end of life relies heavily on the use of medi-
cations, pharmacists can play a key role in the interdisciplinary palliative
care team. In 2002, a statement of the American Society of Health-System
Pharmacists (ASHP) on the role of the pharmacy profession in hospice
and palliative care highlighted pharmacists’ responsibilities and scope of
practice. Pharmacists, said the statement, have a pivotal role to play in im-
proving pain management, including “patient specific monitoring for drug
therapy outcomes, recommending alternative drug products and dosage
forms, minimizing duplicative and interacting medications, compounding
medications extemporaneously, improving drug storage and transportation,
and educating staff, patients, and families about the most efficient ways of
handling and using medications” (ASHP, 2002, p. 1772).
Although pharmacy school accreditation standards do not require sepa-
rate courses in end-of-life care for pharmacy students, concepts associated
with pain management and palliative care are part of curriculum standards
in pharmacotherapy (ACPE, 2011). A 2012 survey of education in phar-
macy schools found an average of 6.2 hours devoted to teaching students
about death and dying, an increase from 3.9 hours in 2001 (Dickinson,
2013; Herndon et al., 2003). The 2012 survey also found that 82 percent of
pharmacy schools offered coursework on end-of-life care for pharmacists.
Pharmacy school graduates are eligible for a year-long post-graduate
(PGY1) residency in pharmacy practice, community pharmacy, or managed
care pharmacy. Individuals who wish to gain further specialization can en-
roll in a second year of residency (PGY2). ASHP serves as the recognizing
body for pharmaceutical residency programs, a role that includes monitor-

ing the implementation of the Resident Matching Program. In 2014, 26

distinct types of PGY2 specialty programs were available, including one
in pain management and palliative care. Within this one specialty, 11 indi-
vidual programs are available in the United States. Most of these programs
offer only one position per program, so a total complement of only 13 pain
management and palliative care positions was available during the 2014
match (National Matching Services, 2014). However, pharmacists need
not complete a pain management and palliative care residency program to
work in palliative care. A recent survey of pharmacists in that field found
that only 23 percent had completed a PGY1 residency, and just 5 percent
had completed a PGY2 residency (Latuga et al., 2012).
The Board of Pharmacy Specialties (BPS) offers certification in eight
specialties, as well as two areas that provide an Added Qualification cre-
dential. As recently as 2011, BPS considered adding pain and palliative
medicine as a specialty, but it has yet to do so (BPS, 2011).
Chaplains
Chaplaincy services tend to be the most visible means of meeting the
spiritual care needs of patients with advanced serious illnesses. Spiritual
care is one of eight domains of quality palliative care identified by the
National Consensus Project for Quality Palliative Care (Dahlin, 2013),
and accreditation standards require hospitals and home health agencies to
accommodate all patients’ religious and spiritual needs (Joint Commission,
2008).
Although spiritual care can be provided by physicians,14 nurses, social
workers, other clergy, practitioners of integrative medicine, and lay people,
it is the special domain of chaplains. In health care institutions, chaplains
typically strive to serve people of many different denominations.
Chaplains perform spiritual assessments of patients and families, for-
mulate spiritual treatment plans, consult with other palliative care team
members or outside clergy to ensure that spiritual needs are adequately met,
and provide direct services to patients and families. A consensus confer-
ence on spiritual palliative care developed a set of recommendations that
emphasizes spiritual assessment, responses to spiritual distress, and timely
access to chaplaincy services (Puchalski et al., 2009).
About two-thirds of U.S. hospitals have chaplains, and in hospitals
with palliative care programs, their duties may include serving palliative
care patients. Hospital chaplains conduct spiritual assessments; provide
14 In a 2005 survey of 363 family medicine residents, 96 percent agreed (and 60 percent of
these strongly agreed) they would discuss spirituality with a patient on request (Saguil et al.,
2011).

empathetic listening along with life review and emotional assistance; and
when asked, lead prayer and religious observances (Jankowski et al., 2011).
As one example of the scope of services that may be provided, a chaplaincy
program at the Methodist Hospital System in Houston trains staff in the
system’s spiritual environment of caring and when to call in a chaplain,
provides direct services to patients, and conducts community outreach
(Millikan, 2013).
In a nationwide study of hospital patients who died between 2001 and
2005, the presence of chaplaincy services was associated with a 4 percent
lower rate of hospital mortality and a 6 percent higher rate of hospice en-
rollment, after controlling for geographic variables, hospital type and size,
population density, socioeconomic status, and presence of a palliative care
program (Flannelly et al., 2012).
A study of family members of 284 deceased residents of long-term care
facilities in four states found that 87 percent of residents had received spiri-
tual care from one source or another. Family members of residents who did
receive spiritual care rated the quality of care received in the last month of
life higher than did other family members (Daaleman et al., 2008; see also
Daaleman, 2010). One impediment to spiritual care may be that the privacy
provisions of the Health Insurance Portability and Accountability Act of
1996 appear to exclude spiritual and religious healing from the definition of
health care. As a result, clergy who are not on a hospital (or nursing home)
staff cannot readily determine which of their congregants are patients there
(Tovino, 2005).
Chaplaincy services are a required element of hospice care under the
Medicare Hospice Benefit. Hospice and palliative care chaplains sometimes
perform the role of clergy for people near the end of life who do not have
a regular religious affiliation (Vitello, 2008).
Chaplains are certified by the Board of Chaplaincy Certification Inc.,
an affiliate of the 4,500-member Association of Professional Chaplains.
This workforce appears small compared with the potential need. The gen-
eral certification examination covers 29 areas of competency and exists on
two levels: board certified chaplain (BCC) and associate certified chaplain
(ACC). Both levels require an undergraduate degree, ordination or commis-
sion to function as a chaplain, a letter of endorsement from a recognized
faith group, and 2,000 hours of work experience. Additional BCC qualifica-
tions are 72 credit hours in a graduate theological program and four units
of clinical pastoral education. Additional ACC qualifications are 48 credit
hours in a graduate theological program and two units of clinical pastoral
education (BCCI, 2013).
Specialty certification in palliative care (BCC-PCC) was introduced
in 2013 as the first in an expected series of specialty chaplaincy certifica-
tions. Part of the purpose of palliative care specialty certification is to help

chaplains become fully recognized and functioning members of palliative

care teams (APC, 2013).
Other Roles
Rehabilitation Therapists
Several categories of rehabilitation therapists are active in the care of
people with advanced serious illnesses, including palliative care:
• Occupational therapists help patients perform activities of daily

living by dressing, bathing, and ensuring safety. They further assist
with instrumental activities of daily living through meal prepara-
tion and home management. They facilitate rest and sleep, play,
and social and family interaction (AOTA, 2011).
• Physical therapists provide services involving home safety, pain
management, training in the use of medical equipment, caregiver
education, patient positioning, energy conservation, breathing tech-
niques, strengthening, balance reeducation, gait training, transfer
training, and discharge planning (Cruz, 2013).
• Speech-language pathologists help relieve communication impair-
ments and swallowing difficulties (Pollens, 2004).
Direct Care Workers

According to an IOM report on workforce needs for an aging popula-
tion, direct care workers “are the primary providers of paid hands-on care,
supervision, and emotional support for older adults in the United States”
(IOM, 2008, p. 199).15 Direct care workers often provide assistance with
activities of daily living and serve the patient at the bedside morning, noon,
and night in nursing homes, private homes, and other nonhospital settings.
The category of direct care workers consists of nursing assistants, home
health aides, and personal care aides.
Direct care is not established as a profession, and workers often are
foreign born (23 percent in 2010) and constitute an almost invisible corps
of essential health care personnel. In 2008, there already were more than
3 million direct care workers, and a workforce of 4.3 million is forecast
for 2018—a projected increase of more than 40 percent in 10 years (PHI,
15 The term “direct care worker” in this context differs from some other uses of the term.
In other contexts, the term may cover not only aides but also many nurses and other health
professionals who provide services to patients directly, rather than through consultations,
administration, or other indirect ways.

2011). About 90 percent are women, and 45 percent are African American
or Hispanic (IOM, 2008).
Many direct care workers are employed by nursing homes, hospices,
home health agencies, or continuing care residential communities, and oth-
ers are hired by families and paid out of pocket for services provided in the
home. Because pay rates are low and many jobs are part-time, nearly half
of direct care workers are eligible for public assistance. A recent U.S. De-
partment of Labor regulation would bring direct care workers under mini-
mum wage legislation (Lopez, 2013). The federal government sets training
requirements for nursing assistants and home health aides who work in
nursing homes and home health agencies certified for Medicare and Med-
icaid. For other types of direct care workers, states may set requirements
(PHI, 2011). Under the Affordable Care Act, nursing homes are required
to provide in-service training to nursing assistants on dementia and resident
abuse (CMS, 2011).
Given low pay rates and other negative aspects of many direct care
jobs, as well as projected increases in demand associated with the aging
population, the IOM report cited above recommends that state Medicaid
programs increase direct-care pay rates and fringe benefits. It also recom-
mends state and federal action to increase minimum training standards,
including establishment of 120 hours of training (compared with the cur-
rent 75 hours) as a minimum requirement (IOM, 2008, Recommendations
5-1 and 5-2).
Family Members
Family members, even those who may not be fully engaged as family
caregivers, play vital roles on the palliative care team. They support the
patient. They advocate for the patient to ensure that needs are being met
and obvious errors are avoided. They assist with medication acquisition
and administration, especially in home-based care. They inform profes-
sional care team members about patient preferences and personal traits.
They contribute to, and help patients understand, the treatment plan and
how it is being implemented. And they participate in transitions from one
setting to another. As described in Chapter 2, family caregivers (with “fam-
ily” defined broadly) have a dual presence on the palliative care team, both
serving as the main provider of services from hour to hour and requiring
support services themselves.

Findings
This study yielded the following findings on creating change in profes-
sional education to improve the quality of end-of-life care.
Growth of Palliative Care Specialties

Since the IOM report Approaching Death (IOM, 1997) was published,
hospice and palliative medicine has become established as a defined medical
specialty, with 10 cosponsoring certification boards, and as a certification
of added qualification in four osteopathic specialties. As a result, more
than 6,500 physicians are now board certified in this specialty. Certifica-
tion programs in palliative care have also been established for seven levels
of nursing, two levels of social work, and chaplaincy16,17 (ABEM, 2013;
ABFM, 2013; ABIM, 2013d; ABMS, 2012; ABP, 2013; ABPN, 2013; ABS,
2013; APC, 2013; Gross and Bell, 2013; NASW, 2014; NBCHPN®, 2014).
Palliative Care in the Curriculum

In medical schools, the curriculum is required to cover end-of-life care,
but the average total offering is only 17 hours over the 4 years, and there
usually is no required course. Baccalaureate nursing programs are similarly
required to include end-of-life care, but the average total offering was most
recently determined to be less than 15 hours (AACN, 2008; Dickinson,
2007, 2011; Liaison Committee on Medical Education, 2013; Van Aalst-
Cohen et al., 2008).
Palliative Care Content in Medical Licensure

and Certification Examinations
Palliative care content in medical licensure and non–hospice and pallia-
tive medicine certification examinations appears limited. Palliative and end-
of-life care is not among the 15 areas blueprinted for Step 3 of the United
States Medical Licensing Examination. End-of-life care and communication
account for only 2 percent of the content of the oncology certification ex-
amination. The entire subject of “ethics, malpractice, other”—which con-
ceivably could include some aspects of palliative care—accounts for only
16 Personal communication, S. McGreal, marketing and communications specialist, ABMS,

February 4, 2014.
17 Personal communication, S. L. Schafer, director of certification, NBCHPN®, February 5,
2014.

0.5 percent of the content of the cardiovascular recertification examination

(ABIM, 2013a,b; United States Medical Licensing Examination, 2013).
Continuing Education in Palliative Care

Continuing education in palliative care includes two well-established
programs that use a train-the-trainer approach: Education in Palliative and
End-of-life Care (EPEC), primarily for physicians and advanced practice
nurses, and the End-of-Life Nursing Education Consortium (ELNEC) for
nurses (CAPC, 2013; ELNEC, 2013; EPEC, 2013b).
Supply of Hospice and Palliative Medicine Specialists

A shortage of 6,000-18,000 hospice and palliative medicine special-
ists has been estimated. This estimate is based on assumptions involving
hospital-based services only (Lupu and American Academy of Hospice and
Palliative Medicine Workforce Task Force, 2010).
Professions and Other Groups Providing Palliative Care

Palliative care providers include physicians (both hospice and palliative
medicine specialists and clinicians who provide basic palliative care); nurses
(including advanced certified hospice and palliative nurses, certified hospice
and palliative nurses, and nonpalliative nurses); social workers (including
advanced certified hospice and palliative care social workers and certified
hospice and palliative care social workers); pharmacists; chaplains; rehabili-
tation therapists (physical therapists, occupational therapists, and speech-
language pathologists); direct care workers (nursing assistants, home health
aides, and personal care aides); and family members (ABMS, 2012; ANA
and HPNA, 2007; AOTA, 2011; ASHP, 2002; Cruz, 2013; HPNA, 2009;
IOM, 2008; Latuga et al., 2012; Lawson, 2012; PHI, 2011; Pollens, 2004;
Puchalski et al., 2009; Weisenfluh and Csikai, 2013; see also Chapter 2).
Conclusions
The major improvement in the education of health professionals who
provide care to people nearing the end of life has been the establishment of
the specialty of hospice and palliative medicine, along with the establish-
ment or growth of palliative care specialties in nursing and social work.
Three remaining problems are insufficient attention to palliative care in
medical and nursing school curricula, educational silos that impede the
development of interprofessional teams, and deficits in equipping physi-

cians (and possibly nurses and other health professionals) with sufficient
communication skills.
To serve patients who are not currently hospitalized or do not require
specialty palliative care (and their families), there is a need for “basic” or
“primary” palliative care. As defined in Chapter 1 (see Box 1-2), basic
palliative care is provided by physicians who are not hospice and pal-
liative medicine specialists (such as general internists, family physicians,
general pediatricians, oncologists, cardiologists, nephrologists, hospitalists,
emergency physicians, anesthesiologists, intensivists, psychiatrists, and sur-
geons), along with colleagues in other health professions. The three prob-
lems noted above contribute to a general inadequacy in preparing health
professionals to provide basic palliative care.
Recommendation 3. Educational institutions, credentialing bodies, ac-

crediting boards, state regulatory agencies, and health care delivery
organizations should establish the appropriate training, certification,
and/or licensure requirements to strengthen the palliative care knowl-
edge and skills of all clinicians who care for individuals with advanced
serious illness who are nearing the end of life.
Specifically,
• all clinicians across disciplines and specialties who care for people
with advanced serious illness should be competent in basic pal-
liative care, including communication skills, interprofessional col-
laboration, and symptom management;
• educational institutions and professional societies should provide
training in palliative care domains throughout the professional’s
career;
• accrediting organizations, such as the Accreditation Council for
Graduate Medical Education, should require palliative care educa-
tion and clinical experience in programs for all specialties respon-
sible for managing advanced serious illness (including primary care
clinicians);
• certifying bodies, such as the medical, nursing, and social work
specialty boards, and health systems should require knowledge,
skills, and competency in palliative care;
• state regulatory agencies should include education and training
in palliative care in licensure requirements for physicians, nurses,
chaplains, social workers, and others who provide health care to
those nearing the end of life;
• entities that certify specialty-level health care providers should
create pathways to certification that increase the number of health

care professionals who pursue specialty-level palliative care train-

ing; and
• entities such as health care delivery organizations, academic med-
ical centers, and teaching hospitals that sponsor specialty-level
training positions should commit institutional resources to increas-
ing the number of available training positions for specialty-level
palliative care.
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Policies and Payment Systems to Support

High-Quality End-of-Life Care
Financial incentives built into the programs that most often serve peo-
ple with advanced serious illnesses—Medicare and Medicaid—encourage
providers to render more services and more intensive services than are
necessary or beneficial, and the lack of coordination among programs
leads to fragmented care, with all its negative consequences. In short, the
current health care system increases risks to patients and creates avoidable
burdens on them and their families. Meanwhile, the practical but essential
day-to-day support services, such as caregiver training, nutrition services,
and medication management, that would allow people near the end of life
to live in safety and comfort at home—where most prefer to be—are not
easily arranged or paid for.
The U.S. health care system is in a state of rapid change. The impact
of these shifting programs and incentives—and both their beneficial and
unintended negative consequences—on Americans nearing the end of life
should not be overlooked. Appropriate measurement and accountability
structures are needed to ensure that people nearing the end of life will
benefit under changing program policies. In assessing how the U.S. health
care system affects Americans near the end of life, the committee focused
on evidence that the current system is characterized by fragmentation and
inefficiency, inadequate treatment of pain and other distressing symptoms,
frequent transitions among care settings, and enormous and growing care
responsibilities for families.
While the committee focused on improving the quality of care for
people with serious advanced illnesses who may be approaching death,
it also was attentive to the need to control spending throughout the U.S.
263

health care system. Likewise, most new health program proposals for
the last several decades, up to and including the 2010 Patient Protection
and Affordable Care Act (ACA), have tried to balance increasing access
and improving the quality of care with managing costs. Indeed, decades
of experience with the nation’s flagship health care programs—Medicaid
for low-income Americans (including those who “spend down” their life
savings to become eligible) and Medicare for those aged 65 and older and
persons with disabilities—suggest that improving the quality of care can
reduce costs.
For those nearing the end of life, better quality of care through a range
of new delivery models has repeatedly been shown to reduce the need for
frequent 911 calls, emergency department visits, and unnecessary urgent
hospitalizations. Evidence suggests that palliative care, hospice, and various
care models that integrate health care and social services may provide high-
quality end-of-life care that can reduce the use of expensive hospital- and
institution-based services, and have the potential to help stabilize and even
reduce health care costs for people near the end of life. The resulting savings
could be used to fund highly targeted and carefully tailored social services
for both children and adults (Komisar and Feder, 2011; Unroe and Meier,
2013), improving patient care while protecting and supporting families.
This chapter describes those opportunities.
The U.S. health care system is a complex mix of individual profession-
als, acute and long-term care facilities, dozens of ancillary services, payers,
vendors, and many other components. Making a potentially cost-saving
change in one area, regardless of how theoretically sound it may be, may
create a response elsewhere in the system that prevents overall savings from
being achieved. For that reason, piecemeal reforms will not work, and com-
prehensive approaches are needed.
The committee notes that many positive aspects of the nation’s current
evolving health care system—the opportunities it affords for patients to
choose providers and treatments, the growing number of quality initiatives,
its investment in research and technology, and the commitment of large
numbers of professionals and institutions to care for the frailest and sickest
Americans—could be lost in draconian or ill-considered cost-containment
measures, such as stinting on needed and beneficial care. For that reason,
the committee focused on the system changes that would not only serve the
needs of the sickest patients and their families but also, as a result of bet-
ter quality, lead to more efficient, affordable, and sustainable practices. To
this end, much can be learned from existing successful programs and care
delivery models that could be applied more widely.
In May 2013 testimony before the House Committee on Ways and

POLICIES AND PAYMENT SYSTEMS 265
Means Subcommittee on Health, Alice Rivlin1 began with an interesting

question and arrived at an even more interesting answer:
Why reform Medicare? The main reason for reforming Medicare is not
that the program is the principal driver of future federal spending in-
creases, although it is. The main reason is not that Medicare beneficia-
ries could be receiving much better coordinated and more effective care,
although they could. The most important reason is that Medicare is big
enough to move the whole American health delivery system away from
fee-for-service reimbursement, which rewards volume of services, toward
new delivery structures, which reward quality and value. Medicare can
lead a revolution in health care delivery that will give all Americans better
health care at sustainable cost. (Rivlin, 2013)
Rivlin’s remarks highlight the two issues facing Medicare and the U.S.
health sector as a whole—costs and quality. These two intertwined issues
pervaded this study.
The poorer quality of care and higher costs that result from lack of
service coordination, risky and repeated transitions across settings and pro-
grams, and fragmented and siloed delivery and payment systems affect large
numbers of Americans, including those nearing the end of life. Although
it is too early to predict the ultimate effects of the ACA, it is not too soon
to start calling for accountability and transparency in care near the end of
life to ensure that the goals of health care reform are realized for the most
vulnerable and sickest beneficiaries.
This chapter describes systemic shortcomings in U.S. health care that
hinder high-quality, compassionate, and cost-effective care for people of all
ages near the end of life and their families. The chapter begins by summariz-
ing the quality and cost challenges that must be faced in efforts to redesign
policies and payment systems to support high-quality end-of-life care. It
then provides background information on the most important programs
responsible for financing and organizing U.S. health care and the perverse
incentives in those programs that affect people near the end of life. Next,
the chapter examines the gap between the services these programs pay for
and what patients nearing the end of life and their families want and need.
The chapter then turns to opportunities and initiatives to address the short-
falls and gaps in the current system and the concomitant need to establish
greater transparency and accountability in the delivery of care near the end
of life. After outlining research needs, the chapter ends with the commit-
1 Alice Rivlin is Leonard D. Schaeffer chair in health economics at the Brookings Institu-
tion, a visiting professor at the Public Policy Institute of Georgetown University, and director
of Brookings’ Engelberg Center for Health Care Reform. She recently served as a member of
the President’s Debt Commission, was founding director of the Congressional Budget Office,
served as Office of Management and Budget director, and was Federal Reserve vice-chair.

tee’s findings, conclusions, and recommendations on policies and payment

systems to support high-quality end-of-life care.
THE QUALITY CHALLENGES

Americans of any age who have a serious and potentially life-limiting
medical condition—from infants with a devastating genetic disorder, to
young adults brain-injured in an automobile crash, to frail older people
with multiple chronic diseases—can experience a system that is structured
and financed to provide costly interventions, high-tech services, and crisis
and emergency care. This system is experienced by many thousands of
people. What requires close examination and reform is how those resources
are spent and whether they are well matched to the values, goals, wishes,
and needs of patients and families. Current evidence suggests they are not.
The health care payment system in the United States is different from
that in other wealthy, industrialized nations and has resulted from the na-
tion’s unique politics and history. The U.S. system rewards the volume of
medical procedures and therapies provided, and typically neither recognizes
nor pays for the day-to-day, long-term services and supports—such as a
companion to help with dressing, bathing, and eating—that are needed
by people with advanced serious illnesses and their families (Feder et al.,
2000; MedPAC, 2011; Rivlin, 2013). As noted in Chapter 2, given an in-
formed choice, most people would prefer to have these ongoing needs met
in their homes and communities. Because they often cannot, they routinely
and repeatedly resort to 911 calls, emergency department visits, and hos-
pitalizations that are neither beneficial nor wanted (Meier, 2011). This is
poor-quality care, and it is extremely expensive.
People with advanced serious illnesses and multiple chronic condi-
tions share certain needs independent of their diagnosis, stage of illness, or
age. They have a high prevalence of pain and other distressing symptoms
that adversely affect function and quality of life. They are at high risk of
functional dependency, and the majority, like more than 60 percent of the
costliest 5 percent of Medicare beneficiaries, require help from another
person in meeting basic needs on a daily basis. Many suffer from cogni-
tive impairments, such as dementia or delirium, and from other mental
health problems, such as depression and anxiety—problems that require
specialized attention and intervention. Meeting such needs places enormous
burdens—physical, emotional, practical, and financial—on their families
and especially, as discussed in Chapter 2, on family caregivers.
In this context, the committee believes a major reorientation of Medi-
care and Medicaid is needed to craft a system of care that is properly de-
signed to address the central needs of nearly all Americans nearing the end

of life. This reorientation will require recognizing the root causes of high
utilization of the system (such as exhausted family caregivers); designing
services to address those causes (such as round-the-clock access to advice
by telephone); reallocating funding away from preventable or unwanted
acute/specialist/emergency care to support more appropriate services; and
reducing the financial incentives that drive reliance on the riskiest, least
suitable, and most costly care settings—the emergency department, the
hospital, and the intensive care unit. Fundamentally, services must be tai-
lored to the evolving needs of seriously ill individuals and families so as to
provide a positive alternative to costly acute care and to help these patients
remain safely at home, if that is their preference. Such tailoring of services
would benefit far more people than attempting to reduce services for those
in predictably imminent danger of dying.
THE COST CHALLENGES

Forty years ago, U.S. national health care expenditures totaled $75 bil-
lion, or 7.2 percent of the nation’s gross domestic product (GDP); by 1990,
they totaled 10 times that amount—$724 billion—or 12.5 percent of GDP;
and just 22 years later, in 2012, they totaled $2.8 trillion, or about 17.2
percent of GDP, having risen some $100 billion between 2011 and 2012
(Martin et al., 2014).2
With by far the largest budget of any department in the federal govern-
ment and a program scope that “touches the lives of virtually every Ameri-
can” (IOM, 2009, pp. 21-23), the U.S. Department of Health and Human
Services (HHS) exerts enormous influence over health care in America. That
influence is exerted chiefly through Medicare and Medicaid, and the cost
challenges in the Medicare and Medicaid programs are of urgent and long-
standing concern to policy analysts across the political spectrum (Altman
and Shactman, 2011, p. 345; Moffit and Senger, 2013; Robillard, 2013).
The National Commission on Fiscal Responsibility and Reform called
federal health spending the nation’s “single largest fiscal challenge over the
long run” (National Commission on Fiscal Responsibility and Reform,
2010, p. 36). Medicare and Medicaid have grown exponentially since their
establishment almost 50 years ago, and their rules and structure have done
much to shape care for the seriously ill and those who are dying. Financial
pressure on federal health spending has several causes:
2
The $2.79 trillion figure includes expenditures for personal health care ($2.36 trillion),
government administration ($33 billion), net cost of health insurance ($164 billion), and
government public health activities ($75 billion), as well as $160 billion in noncommercial
research, structures, and equipment.

• Medicare and Medicaid are expensive. The two programs cost a

combined $994 billion in 2012,3 or about 36 percent of total U.S.
national health expenditures, and are projected to cost $1.125 tril-
lion in 2014 (Cuckler et al., 2013). By consuming a large and grow-
ing portion of public spending, Medicare and Medicaid may crowd
out needed investments in education, the environment, housing,
infrastructure such as roads and bridges, alleviation of poverty,
and other areas, which together arguably have a greater effect than
medical care on population health.
• Expenditures for the two programs continue to rise and are pro-
jected to account for an increasing share of the economy. Although
overall growth in U.S. health expenditures has slowed in recent
years, spending on Medicare grew by almost one-third between
2007 and 2012 (from $432.8 billion to $572.5 billion) and on
Medicaid by about 30 percent (from $326.2 billion to $421.2 bil-
lion) (Martin et al., 2014). Medicare trustees project that the cost
of the program will grow from 3.6 percent of the nation’s GDP in
2012 to 5.6 percent in 2035 (Boards of Trustees, Federal Hospital
Insurance and Federal Supplementary Medical Insurance Trust
Funds, 2013), while Medicaid expenditures are expected to more
than double between 2013 and 2022, from $265 billion to $536
billion, especially with expansions in eligibility under the ACA
(Elmendorf, 2013).
• The population is changing. The aging of baby boomers (those
born between 1946 and 1964) and the growing number of Ameri-
cans who are living longer but with substantial burdens of chronic
disease put pressure on both Medicare (health services) and Med-
icaid (long-term care). Older people are the population group most
likely to have chronic conditions leading to functional dependency,
and spending on patients of all ages with chronic conditions ac-
counts for 84 percent of health care costs (Moses et al., 2013).4
• Family caregiving has its limits. Older Americans’ reliance on fam-
ily members—whose care was valued at $450 billion in 2009—to
serve as caregivers may be difficult to sustain (Feinberg et al.,
2011). About one-half (45 percent) of American women aged 75
and older live alone, and their children, if they have any, may be
unable to leave their own jobs to take on the caregiving role (AoA,
2013). A loss of family caregiving capacity would increase demand
for services paid for by both Medicare and Medicaid.
3 The sum of Medicare ($572.5 billion); Medicaid, federal ($237.9 billion); and Medicaid,
state and local ($183.3 billion) (Martin et al., 2014).

4 The Medicare-eligible population is 14 percent of the U.S. population and 40 percent of
the population incurring high health care costs (see Appendix E).

• The proportional tax base for the programs is shrinking. The ra-
tio of elderly Americans to working-age Americans, who pay the
taxes that fund Medicare and Medicaid, is shifting. In 1990, there
were 21 Americans aged 65 and older for every 100 working-age
Americans (Bureau of the Census, 2013); the projection for 2030
is 38 Americans 65 and older for every 100 of working age. An
ever-smaller proportion of working Americans will be asked to
contribute to health care for people at all income levels, including
those with large incomes and substantial financial assets.5
• The pay-as-you-go system has its limits. Despite popular miscon-
ceptions, Medicare is funded by current contributions and rev-
enues. In general, beneficiaries have not fully “paid in” during their
working years for the benefits they later “take out” (Jacobson,
2013). In 2010, for example, a one-income, average-wage couple
took out more than $6.00 in Medicare benefits for every $1.00
paid in (Steuerle and Quakenbush, 2012).
Analysts differ in their views on the relative importance of the various

factors implicated in the rise in federal expenditures on health care:
• One recent analysis suggests that most increases in health care costs
since 2000 have not been the result of population factors, such as
aging or demand for services, but of high prices (especially for hos-
pital care), the cost of drugs and medical devices, and administra-
tive costs (Moses et al., 2013). These authors conclude that higher
prices accounted for some 91 percent of the increase between 2000
and 2011. Average prices for everything from pharmaceuticals to
surgeries are dramatically higher in the United States than in other
countries (Klein, 2013).
• Other analyses attribute growth in health care costs to a larger mix
of factors. The Bipartisan Policy Center (2012), for example, cites
13 major contributors to costs,6 emphasizing that none of them ex-
ists in isolation and that policy interventions must address multiple
cost drivers.
5 Although higher-income beneficiaries pay somewhat more for their Part B (physician)
coverage.
6 The 13 cost contributors are fee-for-service reimbursement; fragmentation in care delivery;
administrative burden; population aging, rising rates of chronic disease, and comorbidities;
advances in medical technology; tax treatment of health insurance; insurance benefit design;
lack of transparency about cost and quality to inform consumer choice; cultural biases that
influence care utilization; changing trends in market consolidation; high unit prices of medi-
cal services; the legal and regulatory environment; and the structure and supply of the health
professional workforce.

• Based on a series of workshops on lowering health care costs and

improving outcomes, an Institute of Medicine (IOM) committee
concluded that almost 31 percent of 2009’s total health care costs
could have been avoided by eliminating unnecessary services, inef-
ficiently delivered services, excess administrative costs, prices that
were too high, missed prevention opportunities, and fraud (IOM,
2010a, Box S-2).
Because of these economic realities, recommendations simply to in-

crease total Medicare or Medicaid expenditures—say, to add new benefits
for people with advanced serious illnesses without reducing costs else-
where—are unlikely to be accepted. Conversely, proposals that demon-
strably reduce costs as a result of improving the quality of care may be far
better received by policy makers of all political persuasions.
U.S. health spending has grown more slowly than expected since the
recent recession, a trend that has persisted. The slowdown has been attrib-
uted to a number of factors, including less new technology, greater patient
cost sharing, and increased efficiency of providers (Ryu et al., 2013). If the
trend continues, public-sector health care spending through 2021 will be
substantially lower than projected, some analysts believe, and “bring much-
needed relief throughout the economy” (Cutler and Sahni, 2013, p. 848).
Others are less optimistic and believe the fundamental structural, market-
place, pricing, and demographic causes of cost growth remain unchanged
(Bipartisan Policy Center, 2012).
Despite the above analyses, people in their last year of life are widely
believed to be a main driver of excess health care spending. As described in
the background paper prepared for this study by Aldridge and Kelley (see
Appendix E), however, people in the last year of life account for just under
13 percent of total annual U.S. health care spending.7 Although the top 5
percent of health care spenders account for 60 percent of all health care
costs, almost 90 percent of that costliest 5 percent are not in their last year
of life. Since 1978, expenditures for Medicare beneficiaries in the last year
of life—many of whom have multiple chronic conditions and dementia—
have held steady at just over one-quarter of all Medicare expenditures (see
Appendix E). In light of this analysis, the oft-expressed concern about “ex-
cess spending in the last year of life” distracts from the real drivers of U.S.
health care expenditures overall, such as those described above, or those
7 This estimate is based on 2011 Health and Retirement Study data on cost of care in the
last year of life paid by Medicare, adjusted to account for costs paid by other sources (Med-
icaid, 10 percent; out of pocket, 18 percent; other, including private payers, 11 percent). The
per person estimate that resulted was then applied to all 2011 deaths to arrive at a total. A
limitation of this approach is that it excludes information on the non-Medicare population;
however, the majority of costs in the last year of life are covered by Medicare.

of the Medicare program in particular. Those drivers include the system

incentives described in this chapter, which not only push people toward
use of the expensive acute care system as a substitute for inadequate com-
munity and social services but also, by being so costly, inhibit expansion
of those services.
FINANCING AND ORGANIZATION OF END-OF-LIFE CARE

The IOM reports Approaching Death (1997) and When Children Die
(2003) acknowledge the importance of the U.S. health care system in secur-
ing the care needed by dying adults and children and the “complex and often
confusing organizational, financial, and regulatory arrangements that link
health care professionals and institutions with each other and with govern-
ments, insurers, and other organizations” (IOM, 2003, p. 181). The present
report revisits many of these entrenched problems. (Appendix B provides
an overview of progress on the two previous reports’ recommendations.)
Over the past five decades, Congress has established an array of pro-
grams intended to meet the health care needs of older and low-income
Americans:
• Medicare, the largest program, covers Americans aged 65 and

older, people with permanent disabilities receiving Social Secu-
rity Disability Income, and those with one of several specific life-
threatening conditions. As noted, Medicare is federally funded by
current revenue.
• Medicaid covers pregnant women, children, adults with dependent
children, people with disabilities, the low-income elderly, and in
some states the “medically needy”8 (KFF, 2013a). Although people
commonly think of Medicaid as a program for poor children and
their parents, fully 30 percent of the program’s 2011 expenditures
(approximately $125 billion) was for long-term care. Medicaid
is financed jointly by the federal government and the states. The
federal government allows the states wide administrative latitude,
which results in great variability in benefits and eligibility among
states.
• The nearly 10 million Americans who receive both Medicare and
Medicaid benefits are termed “dual-eligible.” A recent study of 10
years of data on the extent and causes of people “spending down”
8 States that have “medically needy” programs allow people whose income exceeds usual
Medicaid eligibility thresholds to enroll if their income minus medical expenses meets the
eligibility standard (http://www.medicare.gov/your-medicare-costs/help-paying-costs/medicaid/
medicaid.html [accessed December 16, 2014]).

their assets to become eligible for Medicaid found that almost

10 percent of the non-Medicaid population aged 50 and older be-
came Medicaid eligible by the end of the study. Almost two-thirds
of Medicaid recipients became eligible by spending down, and
people who spent down had substantially lower incomes and fewer
assets to begin with—a finding “inconsistent with the common
assumption that . . . people who spend down are predominantly
middle class” (Wiener et al., 2013, p. ES-2).
The dual-eligible population faces special challenges because the sepa-

rately created and managed health and social programs under Medicare and
Medicaid are not coordinated and contain perverse eligibility and coverage
incentives. These financial incentives create waste and result in patients
moving back and forth between care settings (and payment options) not
for medical reasons, but to maximize provider reimbursements. The result
is care that is both poor quality and very costly. The ACA created a new
Medicare-Medicaid Coordination Office, described later in this chapter, in
an attempt to address these challenges.
Table 5-1 briefly summarizes the principal programs available to meet
the needs of people with serious advanced illnesses and their families. The
paper by Huskamp and Stevenson in Appendix D provides additional de-
tail, as does the series of “Payment Basics” papers available on the website
of the Medicare Payment Advisory Commission (MedPAC, an independent
congressional agency, http://www.medpac.gov). The detailed regulations
TABLE 5-1 Major Health and Social Programs Available to People with
Serious Advanced Illnesses
Program
Number of Payments
Americans Principal Services (FY 2012
Program Who Benefit Covereda unless noted)
Traditional Medicareb (federal)
Medicare Part A 49.4 million (2012) Primarily acute inpatient $139 billion
hospital care (90 days
per illness episode),
skilled nursing facility
stays, and other services
Medicare Part B 44 million (2010) Physician visits and $102 billion
other health professional
services

TABLE 5-1 Continued

Program
Number of Payments
Medicare 14.4 million Part A and Part B $123 billion
Advantage (2013) benefits managed by
Program local and regional health
plans, with other services
(hospice, drug coverage)
optional, often for an
additional premium
Medicare Part D 36 million (2013) Outpatient drug expenses $54 billion
through prescription
drug plans (deductibles
and cost sharing apply,
except for low-income
Americans)
Medicare Hospice 1.2 million (2011) Hospice-provided $14 billion
Benefit services related to a (2011)
(under Part A) terminal illness
Medicare Home 3.4 million (2011) Skilled care at home: $21 billion
Health Care (under nursing; physical,
Parts A and B) occupational, or speech
therapy; medical social
work; home health aide
services
Medicaid (federal and state)
Medicaid Health 14.8 million elderly Inpatient and outpatient $272 billion
Insurance people and people hospital care, physician (2011)
with disabilities and other professional
(2013) services, and laboratory
and radiology; all states
except Oklahoma cover
hospice care
Long-Term Care 4.4 million adults Nursing home and home $125 billion
Assistance (2011) health care (2011)
Assistance 9.4 million Medicare premiums and $115 billion

to Medicare Medicare cost sharing, as well (2011)
Beneficiaries beneficiaries as uncovered services
(especially long-term
care) for “dual-eligible”
people
continued

TABLE 5-1 Continued

Program
Number of Payments
U.S. Department of Veterans Affairs (VA)c
Medical Care 5.6 million veteran Medical care, including $46 billion
patients long-term care, home (2012)
care, respite care, and
hospice/palliative care
Private Insurance
Usually through 149 million Wide variation in $917 billion

Employment- nonelderly coverage; almost
Related Plans for 8 percent of hospice
Employees and patients’ care is paid for
Retirees by private insurance,
compared with 84
percent paid for by the
Medicare Hospice Benefit
Medicare 10.2 million Mostly costs not covered Information not
Supplemental by Medicare, such as available
Insurance deductibles, co-insurance,
and co-payments
Long-Term Care 10 percent of the Nursing home and other 4 percent of

Insurance elderly long-term care services, long-term care
depending on the policy expenses
NOTES:
aDoes not include some services, administration, public health, and investment.
bSome people receive benefits under more than one program.
cThe VA’s medical care category includes costs of medical services, medical administration,
facility maintenance, educational support, research support, and other overhead items, but
does not include costs of construction or other nonmedical support (http://www.va.gov/
vetdata/Expenditures.asp [accessed December 16, 2014]).
SOURCES: MedPAC (payment basics): http://www.medpac.gov; Huskamp and Stevenson
(see Appendix D); Medicare Part A and Medicaid enrollees: Kaiser Family Foundation, State
Health Facts (KFF, 2014); Medicare Part B: CMS “Medicare Enrollment: National Trends”
(CMS, undated-a; KFF, 2013a); Medicaid Long-Term Care Assistance: AARP Public Policy
Institute (2013), KFF (2013a); Private insurance: Martin et al. (2014); Medicare Supplemental
Insurance: AHIP (2013); Long-Term Care Insurance: NBER (undated).

pertaining to these programs run to thousands of pages, and many of

their key features are changing as a result of the ACA. As an example, the
number of enrollees in the Medicaid program will rise substantially under
the act as many states extend coverage to newly eligible residents (most of
whom formerly lacked health insurance).
Medicare is the chief payer of care for people aged 65 and older with
advanced serious illnesses and those who elect hospice. The committee
calculated that in 2009, approximately 80 percent of U.S. deaths occurred
among people covered by Medicare. This share has grown since the pub-
lication of Approaching Death (IOM, 1997), when Medicare covered ap-
proximately 70 percent of deaths (IOM, 1997, p. 155).
Medicaid is the most significant payer for care of low-income children
with life-limiting conditions, and it paid more than two-fifths of the nation’s
total bill for nursing home and other long-term care services in 2010 (KFF,
2013a,b). Additional funding for long-term care services comes from Medi-
care (for post-acute care), the Social Services Block Grant, the VA, Older
Americans Act programs, the U.S. Department of Housing and Urban
Development, other state programs, private insurance, and out-of-pocket
spending. Families pay out of pocket for many expenses incurred in the last
years of life. In a study of 3,209 Medicare beneficiaries, total health care
expenditures in the 5 years before death not covered by insurance plans
amounted to $38,688 for individuals and $51,030 for couples in which
one spouse dies. For one-quarter of the families studied, these expenditures
amounted to more than total household assets (Kelley et al., 2013b). Note
that high out-of-pocket costs and severe financial impacts are not limited
to families with elderly decedents. Recent research has highlighted the eco-
nomic hardship—including work disruptions, income loss, and increased
poverty—among families of children who have advanced cancer and those
who die (Bona et al., 2014; Dussel et al., 2011).
One way or another, however, Medicare and Medicaid cover the great
majority of people in the last years of life, present identifiable problems,
and are clearly amenable to change through federal action. Consequently,
this chapter focuses on these two programs.
PERVERSE INCENTIVES AND PROGRAM MISALIGNMENT

At the system level, the financial incentives driving the volume of
services delivered and leading to fragmentation in the nation’s health care
system are among the most significant contributors to unnecessarily high
costs (Kamal et al., 2013). According to Elhauge (2010, p. 8), “The current
payment system perversely provides disincentives for any provider to invest
in coordination or care that might lessen the need of patients for health
care, because . . . such investments result in fewer payments for medical or

hospital services.” These perverse incentives have led to a series of discon-

nected, siloed service programs, each with different payment, eligibility, and
benefit rules and requirements.
Rigid silos of covered services are difficult for program managers,
health care facilities, clinicians, and families to overcome when trying to
meet the needs of a particular patient. In fact, one of the most burdensome
problems patients and family caregivers face is the lack of coordination and
communication among different components of the health care system. Not
knowing whom to call or who is in charge of a patient’s care is deeply frus-
trating and adds unnecessary stress to already difficult situations (National
Direct Service Workforce Resource Center, 2011). Default reliance on the
emergency care system and on 911 calls adds risk of harm, burden, and
cost. Table 5-2 summarizes how the financial incentives of public programs
affect people with serious advanced illnesses.
Absent incentives and mechanisms for true integration across program
eligibility, benefits, and financing, it will be impossible to achieve an ef-
fectively functioning continuum of care for people with advanced serious
illnesses. This situation is in sharp contrast to the IOM’s “new rules to
redesign and improve care,” which emphasize customization based on pa-
tient needs, with the patient, not the health system, as the source of control
(IOM, 2001, pp. 61-62). Technical, political, and attitudinal barriers must
be overcome to integrate funding streams and end cost shifting among
programs. Whether recent health care reforms will be able to sufficiently
realign current incentives remains to be seen.
Payer Policies and Costs of Care

Since Medicare’s inception nearly half a century ago, doctors and
hospitals have been reimbursed for the care they provide on the basis of
fees for services performed. (Figure 5-1 shows a breakdown of Medicare
benefit payments by type of service for 2012.) Fee-for-service payments
reward the volume, not the quality, of services delivered. They remain the
dominant financing model in U.S. health care despite a rising proportion
of Americans in capitated health plans, including Medicare managed care
(Medicare Advantage), and the growing number of salaried physicians
(Kane and Emmons, 2013).
Generous fee-for-service payments give physicians incentives to—even
in the final weeks of life—provide high-intensity, high-cost services, consult
multiple subspecialties, order tests and procedures, and hospitalize patients.
And because referring patients to hospice reduces the income of some
other providers, the fee-for-service system discourages timely referrals to
hospice. A study of more than 286,000 randomly selected fee-for-service
Medicare beneficiaries who died in 2009 found that although 42 percent

TABLE 5-2 How Financial Incentives in Public Programs Affect People

with Serious Advanced Illnesses
Effects on People with
General Payment Serious Advanced
Program Approach Financial Incentives Illnesses
Medicare Part A Fee-for-service, (1) Higher (1) May encourage
(hospitals) based on patient’s payments for more overuse of services,
diagnosis and intensive services even when
hospital’s cost are an incentive to nonbeneficial; (2)
experience provide services frail, very sick people
and procedures; experience multiple
(2) fixed, diagnosis- transfers from
based payments for one care setting to
an inpatient stay another and increased
encourage early rehospitalization rates
discharge, often to a
skilled nursing facility
Medicare Part A Payment of a fixed Patients cannot 30 percent of
(skilled nursing per diem based on receive both skilled Medicare beneficiaries
facilities) the seriousness of a nursing and hospice receive “rehabilitative”
resident’s condition care for the same care in a skilled
condition; basing nursing facility in the
payment on patient last 6 months of life,
acuity in theory almost always after a
encourages providers hospital discharge
to capture the entirety
of patients’ needs
(although quality
concerns remain)
Medicare Part For 97 percent (1) The hospice (1) Survival is difficult
A (Medicare of days, hospices benefit is limited to to predict, and the
Hospice Benefit) receive an all- people who have an limit creates “an
inclusive per diem expected prognosis artificial distinction
payment, not of 6 months or less if between potentially
adjusted for case the disease runs the life-prolonging and
mix or setting or expected course and palliative therapies”
for outlier cases who agree to forgo (see Appendix D) as
curative treatment well as a psychological
for the terminal barrier to accepting
condition; (2) the hospice care; (2) if
program was designed care is too complex for
mainly for care in the the home, transfer to a
home (where room hospital and discharge
and board are not to skilled nursing may
an issue) and does appear to be the best
not take into account option unless patients
variable needs over also have Medicaid
time (which pays for
nursing homes)
continued

TABLE 5-2 Continued

Medicare Part B Fee-for-service Encourages Excessive, high-
(physicians) clinicians to provide intensity, and
more services and burdensome care that
treatments may not be wanted is
provided in the last
months and weeks
of life
Medicare Capitation (1) Plans are (1) Unnecessary and
Part C (Medicare rewarded for efforts unwanted treatments,
Advantage) to manage chronic services, and
diseases effectively; hospitalizations may
(2) when patients be reduced; (2) plans
enroll in hospice, they may be encouraged
revert to fee-for- to promote hospice
service Medicare enrollment among
high-need, high-cost
patients
Medicare Part D Administered prices Prescription drug Less expensive
(drugs) costs are controlled products, often generic
forms, are used when
available
Medicaid Acuity score (1) The acuity score (1) Unknown
Long-Term and assigned to each method reduces (2) Individuals
Nursing Home resident incentives to avoid discharged from the
Care people with costly hospital back to the
conditions; (2) nursing home under
Medicaid’s lower the skilled nursing
reimbursement for benefit cannot
nursing home care receive hospice care
is an incentive to concurrently for
hospitalize dual- the same condition;
eligible residents a 2011 analysis
and return them to suggested one-quarter
the facility under of the hospitalizations
the higher-paying for dual-eligible
Medicare skilled beneficiaries in the
nursing benefit year studied (2005)
were preventable,
being due largely to
the financial incentives
for nursing homes to
make these transfers
(Segal, 2011)

TABLE 5-2 Continued

Medicaid Home For people eligible Intended to prevent Unknown
Health for nursing facility excessively long
services; benefits periods of nursing
vary home care
Administration $1.34 billion Examples include ACL’s goal is to
for Community budget in 2013 elder rights services, increase access to
Living (ACL) for programs the Alzheimer’s community supports
addressing health Disease Supportive for older Americans
and independence, Services Program, and people with
caregiver support, long-term care disabilities; it
and Medicare information, a family administers programs
improvements caregiver support authorized under the
program, nutrition Older Americans Act
services, and some and Developmental
support services Disabilities Assistance
and Bill of Rights Act
SOURCES: Appendix D; effects of skilled nursing facility benefit: Aragon et al. (2012), Segal
(2011); ACL: http://www.acl.gov/About_ACL/Organization/Index.aspx (accessed December
16, 2014).
were enrolled in hospice at the time of their death, fully 28 percent were
under hospice care for 3 days or less. More than 40 percent of late enroll-
ments in hospice were preceded by an intensive care unit stay (Teno et al.,
2013). The authors further compared these 2009 rates with patterns of care
for similar numbers of Medicare beneficiaries in 2000 and 2005. Over the
decade, the tendency to provide hospital and intensive care near the end of
life appeared to be increasing.
Both liberals and conservatives find fault with the fee-for-service pay-
ment system (Capretta, 2013). The National Commission on Physician
Payment Reform, established by the Society of General Internal Medicine
in 2012, concluded that fee-for-service reimbursement is the most important
cause of high health care costs and expenditures. The first of the commis-
sion’s 12 recommendations says, “Over time, payers should largely elimi-
nate stand-alone fee-for-service payment to medical practices because of its
inherent inefficiencies and problematic financial incentives” (Schroeder and
Frist, 2013, p. 2029).
Nevertheless, fee-for-service is expected to remain a continuing and
significant payment approach for many years to come (Wilensky, 2014).
While Medicare and other payers will reimburse accountable care organi-
zations (ACOs) established under the ACA through a graduated capitation

FIGURE 5-1 Medicare benefit payments by type of service, 2012.

SOURCE: KFF, 2012. Reprinted with permission from The Henry J. Kaiser Family
Foundation.
Figure 5-1
approach, ACOs in turn will use fee-for-service methods to pay many phy-
sicians. The act therefore includes provisions to improve the fee-for-service
system, revising the physician fee schedule and better reflecting the relative
value of resources expended (Ginsburg, 2012).
The Hospital Environment
Hospital Care
As noted in Approaching Death (IOM, 1997, p. 96), “curing disease
and prolonging life are the central missions of [hospitals]. Hospital cul-
ture often regards death as a failure.” While hospital and intensive care
undoubtedly saves the lives of a great many otherwise healthy people,
it is not necessarily useful—and is, to the contrary, harmful—for people
with advanced and irreversible chronic illnesses. Yet it is hospital care, not
community- or home-based care, that consumes the largest share of Medi-
care spending for patients in the final phase of life: fully 82 percent of all
2006 Medicare spending during the last 3 months of life was for hospital

care, despite the known risks and costs of such care and despite widespread
patient preferences, noted in earlier chapters of this report, for less intensive
and more home-based services (Lakdawalla et al., 2011).
The transitions between care sites—from hospital to home or nursing
home and back again—encouraged, as discussed earlier in this chapter,
by the current payment system, put patients at risk (Davis et al., 2012).
Resulting higher rates of infection, medical errors, delirium, and falls are
collectively captured by the term “burdensome transitions” (see Chapter 2),
and they are increasingly common near the end of life. Earlier death may
also result from these transitions. The average (mean) number of transi-
tions from one site of care to another in the last 90 days of life increased
from 2.1 per decedent in 2000 to 3.1 in 2009, and more than 14 percent
of these took place in the last 3 days of life (Teno et al., 2013). This high
rate of transitions between care settings is costly and inconsistent with
high-quality care.
Emergency Services
When emergency medical services (EMS) providers respond to a 911
call for a Medicare patient, they are required under current Centers for
Medicare & Medicaid Services (CMS) policies (generally followed by pri-
vate insurers as well) to transport the patient to a hospital as a condition
for being paid for their response. As a result, patients who might better be
served by a palliative care home visit or a trip to a primary care clinician, if
such services were available, end up being treated in an emergency depart-
ment (Alpert et al., 2013).9 Pain and other unmanaged symptoms prompt
many of these visits.
Fifty percent of older Americans visit the emergency department in their
last month of life, and 75 percent do so in the last 6 months of life; in 77
percent of cases, the visit results in hospitalization (Smith et al., 2012). Ap-
proximately 1.1 million EMS transports are covered by Medicare annually,
at a cost of some $1.3 billion.
Unnecessary and burdensome EMS transports represent poor-quality
care for people with advanced serious illnesses. When they present at the
emergency department, they may be admitted to inpatient care because of
an unclear diagnosis; the severity of symptom distress; caregiver concerns;
and, most important, a lack of prior clarification of achievable goals for
care. Emergency departments are experiencing a growing number of visits
by elderly patients whose mix of serious medical conditions, cognitive
impairments, functional dependencies, complex medication regimens, and
9 Recent
growth in hospital admissions has been attributed entirely to emergency department
admissions, which increased by 2.7 million between 2003 and 2009 (Kellermann et al., 2013).

caregiver exhaustion make high-quality emergency care extremely difficult

(Hwang et al., 2013).
Many terminally ill patients return to the emergency department be-
cause they have not been informed and do not know that they are dying or
that there are no effective treatments for their underlying disease (Mitchell
et al., 2009). They may be unaware of care alternatives, such as physician
house calls, community-based palliative care, or hospice. If EMS providers
had more options available to them—other than not being paid—when
they respond to overwhelmed caregivers who have panicked and called
911, emergency transfers to hospitals might be avoided. Communities are
testing new approaches to training and paying EMS personnel to assess and
intervene with soluble problems at home, such as a fall without evidence of
injury, rather than routinely transporting all patients who call 911 to the
emergency department. Improved “geriatric emergency services” and other
models for providing more in-home care and forestalling 911 calls are being
tested (Hwang et al., 2013).
The use of emergency services near the end of life is not limited to
elderly individuals. Parents of uninsured or publicly insured children with
serious illnesses often face delays in obtaining physician appointments and
end up seeking care in the emergency department, or they may be referred
there by their primary care clinician (Rhodes et al., 2013). In some parts
of the country, critically ill children are stabilized at a general emergency
department, where experience in recognizing a rapidly worsening condi-
tion may be lacking, before transfer to a specialized children’s hospital for
further care (Chamberlain et al., 2013).
Medicaid reimbursement policies, such as lesser payment for ambula-
tory versus emergency department care, give hospitals incentives that favor
care in the emergency department instead of the hospital’s primary care or
pediatric clinic (Chamberlain et al., 2013). Finally, once a child is in the care
system, fee-for-service reimbursement and the greater malpractice litigation
concerns associated with pediatric care may create incentives to overtest
and overtreat (Greve, 2011).
The Ambulatory Care Environment
Physician Services
As the gatekeepers for almost all other services, physicians are among
the most important players in end-of-life care. Under Medicare, beneficia-
ries may see a physician as many times as they wish during a year. However,
they may be responsible for a 20 percent co-payment for every visit after
paying the deductible of $147 (as of 2014). Part B Medicare imposes no

restrictions on the type or number of physicians a beneficiary may visit

(CMS, undated-c).
Physicians’ end-of-life care often fails to meet the needs of patients and
families because some clinicians may
• provide care that is overly specialized and does not address the
multiplicity of a patient’s diseases or the emotional, spiritual,
family, practical, and support service needs of patients and their
caregivers;
• continue disease treatments beyond the point when they are likely
to be effective;
• fail to adequately address pain and other discomfort that often ac-
companies serious chronic illnesses and the dying process; and
• fail to have compassionate and caring communication with patients
and family members about what to expect and how to respond as
disease progresses (Weiner and Cole, 2004; Yabroff et al., 2004).
These problems have numerous causes. Shortcomings in physician edu-

cation regarding end-of-life care are covered in Chapter 4. In addition, the
overall culture of medicine is focused on curing acute medical problems.
Reflecting and reinforcing this tendency, the financing structure of Medicare
and other insurance programs rewards the performance of a high volume
of services and the administration of well-reimbursed treatments and proce-
dures rather than encouraging the provision of palliative and comfort care.
As noted earlier, the general financial incentive within fee-for-service is
to see as many patients as possible and to perform multiple procedures. In
addition, Congress in 1989 created a physician fee structure of “relative
value scales” that takes into account primarily physician time, intensity of
service, malpractice insurance, and a geographic factor. Medicare, Med-
icaid, and many private insurers use this system, which also financially
rewards more complex specialty procedures without regard to patient ben-
efit or cost (MedPAC, 2011). At the same time, the system undervalues
the evaluation and management services necessary to help patients and
families understand what to expect, to explain the pros and cons of treat-
ment options, and to establish goals for care as a disease evolves (Kumetz
and Goodson, 2013).
Annual increases in Medicare’s reimbursements to physicians are, in
theory, tied to growth in the nation’s GDP. This adjustment method, es-
tablished by Congress via the Balanced Budget Act of 1997 and called the
“sustainable growth rate” (SGR), was intended to be cost-saving. Opposi-
tion to limiting physician fee increases has been so strong, however, that

Congress has not imposed these controls since 2002.10 Medicare payment
rates for physicians already are about one-fifth lower than private insurance
rates (Hackbarth, 2009), and any large additional reduction could lead
many physicians to stop accepting new Medicare beneficiaries into their
practices (MedPAC, 2011). Because the SGR approach could jeopardize
older Americans’ access to care, it is politically unpalatable, and because
it fails to incentivize higher-quality care or control health care spending, it
is deemed unrealistic and outmoded (Guterman et al., 2013; Hackbarth,
2013; MedPAC, 2011). Discussion of its repeal continues.
Other Services
Although Medicare does not cap beneficiaries’ hospital admissions or
medical and surgical procedures, it does cap payments for ancillary services
that might substantially benefit certain people nearing the end of life—often
more so than acute care and procedures. Such services may forestall hos-
pitalizations, help people better manage daily activities, and improve both
health status and quality of life (Eva and Wee, 2010; Farragher and Jassal,
2012). Limitations on rehabilitation services (including those that aid in
mobility, swallowing, and communication) may therefore have unintended
adverse consequences for both quality of care and health care costs if pa-
tients’ remediable problems are not addressed.
Depression, anxiety, and other mental health issues are a significant
concern at the end of life and may combine with cognitive problems to
cloud a person’s last months. Federal rules implementing mental health par-
ity legislation have erased most long-standing differences between coverage
of mental health and other health services for patients with Medicaid and
those covered by large group health insurance plans (SAMHSA, 2013);
Medicare will reimburse outpatient mental health treatment (therapy and
medication management) at parity with other Part B services beginning in
2014.11 Whether mental health services will actually become available re-
10 The SGR distorts the Congressional Budget Office’s (CBO’s) estimates of future health care
costs. CBO is required to base its estimates on current law, and the SGR is current law, even
though it is unenforced. In discussing future federal health spending, the Simpson-Bowles com-
mission said, “These projections likely understate [the] true amount, because they count on
large phantom savings—from a scheduled 23 percent cut in Medicare physician payments [in
2012; larger thereafter] that will never occur” (National Commission on Fiscal Responsibility
and Reform, 2010, p. 36). The commission made reforming the SGR its first recommendation
in the health arena.
11
In addition, drug plans operating under Medicare Part D must cover certain classes of
drugs, including antidepressants and antipsychotics. Certain intensive mental health services—
such as psychiatric rehabilitation and psychiatric case management—are not covered (Bazelon
Center for Mental Health Law, 2012).

mains to be seen, however, as many mental health care providers (including

psychiatrists) do not accept insurance at all (Bishop et al., 2014).
The Managed Care Environment

Managed care was developed and tested in the early 1970s as a way of
improving the quality and affordability of health care through capitated, in-
tegrated provider networks; an emphasis on disease prevention; utilization
review for high-cost services; and other means. In the approach’s simplest
formulation, managed care organizations receive capitated payments—that
is, an annual fixed dollar amount for each individual enrolled in the plan
(i.e., per capita).12 For that fee, enrollees receive all their physician care,
hospital care, emergency services, and many other covered benefits, depend-
ing on what is included in a specific plan. The managed care organization
negotiates with providers to achieve reasonable charges and contracts with
(or even hires) physicians. Capitation, in theory, switches incentives toward
keeping enrollees healthy and avoiding costly overtreatment.
Medicare Part C (Medicare Advantage) plans are managed care plans
offered by private insurance companies that cover all Part A and Part B
services. In 2012, Medicare Advantage accounted for 23 percent of all
Medicare expenditures (see Figure 5-1). Unlike Medicare fee-for-service,
Medicare Advantage gives physicians a financial incentive to recommend
hospice for patients nearing the end of life because when plan members
enroll in hospice, fee-for-service Medicare becomes the payer. This hospice
“carve-out” makes it attractive for a plan to shift patients likely to be high-
cost from its rolls to the Medicare Hospice Benefit, but also decreases the
incentive for the plan to develop high-quality palliative care services (see
Appendix D).
In general, health insurance, including managed care programs, may
contain disincentives to enroll people who are the very sickest and costliest.
Such initiatives require careful risk stratification and monitoring to ensure
adequate access and protection for these beneficiaries.
Just as Medicare, through Medicare Advantage, has embraced man-
aged care partly as a way to avoid the costs of unnecessary hospitaliza-
tions, Medicaid has embraced managed care partly to avoid unnecessary
nursing home admissions. Ideally, these capitated environments should
provide models of care and financing that best meet the needs of program
beneficiaries, especially those eligible for both Medicare and Medicaid
12 Payments might include some adjustments, such as for patient age and health status or
local cost of living. The Balanced Budget Act of 1997 included risk adjustment, based on
patients’ diagnoses, to encourage managed care organizations to enroll the sickest Medicare
beneficiaries.

(CMS, 2013b). However, the development of policies for implementing and

ensuring the quality of managed care options for the dual-eligible popula-
tion is hampered by significant data limitations, including a lack of timely
Medicaid data and comprehensive information about dual eligibles enrolled
in Medicare Advantage plans (Gold et al., 2012).
An evaluation of nine state programs of integrated care for dually
eligible beneficiaries, performed for MedPAC, identified several additional
barriers to the development of managed care programs:
• Enrolling beneficiaries in managed care is problematic because of

a lack of awareness of such programs, which may contribute to
opposition from providers, beneficiary advocates, and others.
• Structural design problems include administrative leadership
(through Medicare Advantage rather than state Medicaid pro-
grams), complications in providing patients with social supports
and behavioral health services, and uncertainty regarding whether
to create separate programs for people under age 65.
• Conflicting Medicare and Medicaid eligibility, coverage, and
provider rules complicate state efforts to initiate such programs
(Verdier et al., 2011).
Despite these barriers, models of managed care for dually eligible

individuals have shown promise, even if they have not been widely repli-
cated. The Evercare model, implemented in five nursing homes (Atlanta,
Baltimore, Boston, Colorado [Denver/Colorado Springs], and Tampa) and
involving more than 3,600 patients (half enrolled in Evercare, half receiving
usual care), offered a capitated package of Medicare-covered services and
intensive primary care by nurse practitioners for long-stay, frail, chroni-
cally ill nursing home patients. Services included customized care planning,
coordination, and delivery. Evercare paid nursing homes an extra fee for
“intensive service days” to handle cases that might otherwise have required
hospitalization; this measure contributed to a 50 percent reduction in the
hospitalization rate for enrollees compared with the usual care group. For
those who were hospitalized, stays were shorter for the Evercare group.
Evercare enrollees also had one-half the rate of emergency room visits of
the usual care group and received more physician visits and mental health
services (Kane et al., 2002).
Similarly, an 18-month cohort study of 323 residents with advanced
dementia in 22 Boston-area nursing homes found that managed care en-
rollees had higher rates of do-not-hospitalize orders, primary care visits,
and nurse practitioner visits and lower rates of burdensome transitions
and hospitalizations for acute illnesses compared with traditional fee-for-
service Medicare beneficiaries—all suggesting higher-quality care. Rates of

survival, comfort, and other outcomes did not differ significantly between
the two groups (Goldfeld et al., 2013).
Finally, the Program of All-inclusive Care for the Elderly (PACE) offers
a comprehensive service package designed to avoid nursing home place-
ments. The program was established as a type of provider for Medicare and
Medicaid through the Balanced Budget Act of 1997. PACE serves primarily
dual-eligible individuals with chronic illnesses who are aged 55 and older. It
uses a centralized, nonprofit provider model rather than a looser network
of independent practitioners to provide medical and other clinical services
along with the kinds of supportive and personal care services discussed
later in this chapter—such as meals, transportation to day centers or other
facilities, and in-home modifications.
In 2014, 31 states offered the PACE program. Data from 95 of the na-
tion’s 103 PACE projects indicate they serve a total of slightly more than
31,000 people (National PACE Association, 2014). Thus, the PACE pro-
gram remains small, and its effectiveness in serving the specific needs of the
population requiring palliative care or those nearing the end of life has not
been established (Huskamp et al., 2010; see also Appendix D). Moreover,
a recent analysis found that, although PACE improves quality by effectively
integrating acute care and long-term community supports and reducing
hospitalizations, it has not reduced Medicare expenditures for beneficiaries
with substantial long-term care needs, perhaps because capitation rates
have been set too high (Brown and Mann, 2012).
The slow rate of PACE expansion has been attributed to regulatory and
financial constraints, poor understanding of the program among referral
sources, competition, and rigid structural characteristics of the program
model (Gross et al., 2004). PACE is a comprehensive approach, and it
requires a sophisticated infrastructure. Enabling PACE to be implemented
more widely might require designing ways to expand it to the non-Medicaid
population, as well as other measures (Hirth et al., 2009).
The Palliative Care and Hospice Environment

A full description of the services involved in and benefits of palliative
care, including hospice, is provided in Chapter 2. This section addresses
the costs of palliative care and hospice compared with usual care and the
policies that regulate the organization and provision of palliative care and
hospice services.
Palliative Care
Palliative care programs focus on relieving the medical, emotional,
social, practical, and spiritual problems that arise in the course of a serious

illness. Many seriously ill people—not just those nearing the end of life—
can benefit from palliative care, and it can be provided in many settings,
including the home and the nursing home. In hospitals, palliative care teams
work alongside treating physicians to provide an added layer of support
for patients and their families, focusing on expert symptom management,
skilled communication about what to expect, and planning for care beyond
the hospital. As discussed in Chapter 2, hospital-based palliative care has
grown significantly in the past two decades (CAPC, 2011, 2013).
Palliative care is sometimes viewed as an alternative to what has been
termed “futile care”—that is, interventions that are unlikely to help patients
or be of marginal benefit and may harm them. Although identifying which
treatments are of marginal benefit may be subjective, a study conducted in
one academic medical center found that critical care clinicians themselves
believed almost 20 percent of their patients received care that was defi-
nitely (10.8 percent) or probably (8.6 percent) futile (Huynh et al., 2013).
These opinions were based on four principal rationales: the burden on the
patient greatly outweighed the benefits, the treatment could never achieve
the patient’s goals, death was imminent, and the patient would never be
able to survive outside the critical care unit. The total annual cost of futile
treatment for the 123 (10.8 percent of) patients who received futile care
was estimated at $2.6 million.
At the age of 84, my mother arrived at the emergency room [ER]

in significant pain. During the preceding 3 weeks, she had con-
tacted her health care provider several times about nausea and
been assured it was not significant. Within 36 hours of arriving at
the hospital, she was diagnosed with severely metastasized cancer,
especially the liver and including her bones. Even though the source
of the cancer had not yet been identified and no one had discussed
the reasonableness of pursuing treatment, a port was installed in
her chest for chemotherapy, “just in case.” In the next couple of
days, as further testing was done, she had an instance of unstable
heartbeat and was taken to ICU, where she was given medication
and her heart rate returned to normal. The hospital cardiologist
assured us her heart was not a problem, but that he would see her
every day while she remained in the hospital. Why? All medical
staff consistently pushed ahead with an attitude that chemotherapy
WOULD be pursued, that they would get her well enough to go
home and return for outpatient chemo, and no one ever raised the
issue of whether such an approach would be futile. My sister and
I had to press the doctor intensely to get him to acknowledge that
even with chemo, her life expectancy was well less than a year.

Her condition did not improve over her stay, and 1 week later she
decided not to pursue treatment (after several bouts of explosive
diarrhea and an inability to get out of bed) and went home in
hospice care. She died 2 weeks to the day after going to the ER.
Even when leaving the hospital, they did not suggest the end was
imminent. She had a great deal of testing, implantation of a PIC
[peripherally inserted central catheter] line, and yet no reasonable
analysis of the value of further care from anyone.*
The committee agrees with Parikh and colleagues’ (2013, p. 2348)

opinion that while “cost savings are never the primary intent of providing
palliative care to patients with serious illnesses . . . it is necessary to consider
the financial consequences of serious illness.” Much of the spending on the
sickest Medicare beneficiaries is attributable to hospital care. Hospitals
with specialty palliative care services have been able to reduce their expen-
ditures through shorter lengths of stay in the hospital and in intensive care
and lower expenditures on imaging, laboratory tests, and costly pharma-
ceuticals. In addition, patients receiving hospital-based palliative care have
been shown to have longer median hospice stays than patients receiving
usual care (Gade et al., 2008; Morrison et al., 2008; Starks et al., 2013).
Most studies comparing the costs of palliative and usual care have been
conducted in the hospital setting, but the differing approaches, methods,
and rigor of these studies make their findings difficult to compare. Never-
theless, research using robust methods to assess many of the more mature
U.S. palliative care programs shows a pattern of savings and demonstrates
the substantial excess costs associated with usual care (see Tables 5-3 and
5-4). A 2012 Canadian literature review13 similarly found that hospital-
based palliative care teams reduce hospital costs by $7,000 to $8,000
per patient and reduce the cost of end-of-life care by 40 percent or more
(Hodgson, 2012).
Palliative care provided in nonhospital settings has also been found
to yield cost savings. A systematic review examined studies of palliative
care—cohort studies (34), randomized controlled trials (5), nonrandomized
trials (2), and others (5)—published between 2002 and 2011 and conducted
variously in hospital-based, home-based, and other program settings. Two-
13 In
2012, the Canadian government allocated $3 million over 3 years to support the devel-
opment and implementation of a framework for community integrated hospice and palliative
care models. The Way Forward initiative is led by the Quality End-of-Life Care Coalition of
Canada and managed by the Canadian Hospice Palliative Care Association.

TABLE 5-3 Randomized Controlled Trials Comparing the Costs of

Palliative and Usual Care
Study Number of Patients Excess Cost of
(Period Studied) and Setting Usual Care Other Findings
Gade 517 patients in three Excess 6-month Greater patient
et al., 2008 hospitals receiving post-hospital satisfaction with
(2002-2003) interdisciplinary discharge costs of the care experience
palliative care $4,855 for each and provider
services (275 usual care patient communication in the
patients) or usual (p = 0.001) palliative care than in
care (237) the usual care group;
also median hospice
stays of 24 versus 12
days, respectively
Brumley 145 late-stage Excess costs of Palliative care
et al., 2007 patients who $7,552 for each recipients were 2.2
(2002-2004) received in-home usual care group times more likely than
palliative care member (p = 0.03) usual care recipients
versus 152 who to die at home and
received usual care had fewer emergency
in two group-model department visits
health maintenance and hospitalizations;
organizations in two survival differences
states between the two
groups disappeared
after data were
adjusted for diagnosis,
demographics,
and severity of
illness (Personal
communication, S.
Enguidanos, University
of Southern California,
February 25, 2014)
Greer 151 patients with Excess overall Patients receiving
et al., 2012 metastatic non- costs of $2,282 per early palliative care
(2006-2009) small-cell lung patient among those had significantly
cancer receiving receiving usual care higher quality of life,
usual outpatient only experienced fewer
oncologic care depressive symptoms,
with or without were less likely to
early palliative care receive chemotherapy
comanagement within 2 weeks of
death, had earlier
hospice enrollment,
and survived
2.7 months longer

TABLE 5-4 Observational Studies Comparing the Costs of Palliative and

Usual Care
Number of Patients Excess Cost of
Study (Description) and Setting Usual Care Other Findings
Morrison 4,908 patients who Excess total costs Intensive care unit
et al., 2008 received palliative of $2,642 for each (ICU), imaging,
(observational care consultations usual care patient laboratory, and
study using and 20,551 who discharged alive pharmacy costs were
propensity received usual (p = 0.02) and higher among the
score matching, care in eight $6,896 for each usual care patients
2002-2004) geographically and who died in the
structurally diverse hospital
hospitals (p = 0.001)
Morrison 475 patients who Excess costs of Patients receiving

et al., 2011 received palliative $4,098 for each palliative care
(observational care consultations usual care patient consultation were
study using and 1,576 who discharged alive more likely than usual
propensity received usual care (p <0.05) and care patients to be
score matching, in four diverse $7,563 for each discharged to hospice
Medicaid- urban New York who died in the (30 percent versus
only patients, State hospitals hospital (p <0.05) 1 percent) and
2004-2007) less likely to die
in intensive care
(34 percent versus
58 percent)
Starks et al., 2013 1,815 patients Excess costs of Some differences

(observational who received $2,141 for usual between palliative care
study using palliative care care patients and usual care groups
propensity consultation and with lengths of remained
score matching, 1,790 comparison stay of 1-7 days
2005-2008) patients from two (p = 0.001) and
academic medical $2,870 for usual
center hospitals care patients with
lengths of stay of
8-30 days
(p = 0.012)
Penrod et al., 2010 606 veterans who Excess costs of Instrumental

(observational received palliative $464 per day for variables method
study, 2004-2006) care and 2,715 usual care patients used to account for
who received usual (p = 0.001) unmeasured selection
care in five U.S. into treatment bias
Department of (Stukel et al., 2007)
Veterans Affairs
(VA) hospitals

thirds of the studies were based in the United States, and the remainder
were conducted internationally, in widely differing health systems. The
authors found that, although the studies used a broad variety of utilization,
cost, and outcome measures and employed different specialist palliative care
models, palliative care was “most frequently found to be less costly relative
to comparator groups, and in most cases, the difference in cost is statisti-
cally significant” (Smith et al., 2014, p. 1).
A recent review of published, peer-reviewed outcomes research on
nonhospice outpatient palliative care, which included four randomized
interventions and a number of nonrandomized studies, concluded that
outpatient palliative care produced overall health care savings resulting
from avoidance of expensive interventions. The authors suggest that such
savings are “especially important in systems of shared cost/risk, integrated
health systems, and accountable care organizations” (Rabow et al., 2013,
p. 1546).
Community-based pediatric palliative care has also been found to pro-
duce positive patient and family outcomes, as well as cost savings (Gans et
al., 2012), or at least to be relatively low cost (Bona et al., 2011).
These data across varying types of studies and care settings indicate
potential savings from palliative care consultation and comanagement in
hospitals and suggest savings in other settings as well. Additional research
is needed before firm conclusions can be drawn on the impact of palliative
care delivery on total health care spending.
Hospice Care
The Medicare Hospice Benefit is the one public insurance program
intended specifically to serve beneficiaries within the last few months of
life. Under this benefit, the enrolled beneficiary pays no charge for services
received except for small deductibles for drugs and respite care. Most ser-
vices are provided in the patient’s home by visiting nurses, with variable
additional support from physicians, social workers, personal care aides,
and others. For fiscal year 2014, Medicare’s daily hospice reimbursement
rates were as follows: for routine home care, $156.06; for continuous home
care, $910.78; for general inpatient care, $694.19; and for inpatient respite
care, $161.42 (HHS and CMS, 2013).14 In addition, the total amount of
Medicare payments a hospice provider is allowed to receive in a single year
is capped according to a defined formula.
As described in Chapter 2, hospice services produce many benefits for
patients and families. Matched cohort studies demonstrate that hospice
14 Minus a two percentage point reduction to the market basket update for hospices that fail
to submit the required quality data.

care enhances the quality of care, helps patients avoid hospitalizations and
emergency visits, prolongs life in certain groups of patients, improves care-
givers’ well-being and recovery, and in some reports appears to reduce total
Medicare spending for patients with a length of hospice service of under
105 days (Kelley et al., 2013a).15
Enrollment disincentives Built into the Medicare Hospice Benefit and its
payment rules are several policies that are intended to manage program
costs but may work against the needs of patients with advanced serious
illnesses and their families. Two eligibility requirements meant to limit the
number of people who qualify for the hospice benefit are
• an expected prognosis of 6 months or less if the disease runs the

expected course, as certified by two physicians16; and
• an agreement, signed by the beneficiary, to give up Medicare cover-
age for further treatments aimed at achieving a cure.
For many patients, these criteria have discouraged use of the benefit
until the final days or hours of life and, according to Approaching Death,
exclude “many [people] who might benefit from hospice services” (IOM,
1997, p. 169). The ban on “curative” treatments may also disadvantage
patients with organ failure, for whom life-prolonging and palliative treat-
ments—such as diuretics for people with heart failure—often are the same.
In addition, physicians, patients, and family members alike may be unwill-
ing to accept a prognosis of a few months—particularly given the uncer-
tainty in predicting mortality for diseases other than cancer—or to abandon
cure-oriented treatment (Fishman et al., 2009). These factors contribute to
the brevity of hospice stays: the median length of stay in hospice is 18 days,
and fully 30 percent of hospice beneficiaries are enrolled for less than 1
week. Still, the number of Medicare beneficiaries enrolling in the Medicare
Hospice Benefit more than doubled between 2000 and 2011, from 0.5 mil-
lion to more than 1.2 million (MedPAC, 2013).
Some hospice champions contend that the 6-month limit and the ban
on cure-oriented treatments make the Medicare Hospice Benefit “a legal
barrier to improving integration and collaboration across the health sys-
tem” (Jennings and Morrissey, 2011, p. 304). In a survey of nearly 600
15 Methodological difficulties in analyses of hospice savings include the lack of controlling
for selection bias (that is, people who choose hospice care may be different in some way
from those who do not) and the impact on the data of both very-long-stay patients and those
discharged alive after very long stays, who may have been more appropriate candidates for
long-term care programs rather than hospice.
16 In reality, patients are able to receive hospice services for longer than 6 months if, at the
end of the period, they receive a physician recertification of the 6-month prognosis.

hospices, 78 percent were found to restrict enrollment in some way, such

as by declining to admit patients with ongoing disease treatment needs or
without a family caregiver at home (Aldridge Carlson et al., 2012). Small
hospices are especially likely to restrict enrollment (Wright and Katz, 2007).
I am a registered nurse case manager, certified in palliative nurs-

ing, working with hospice patients in their homes. I think the
single most effective change that could be brought about would
be to extend the hospice benefit to a 1-year prognosis rather than
the current 6 months. This may allow for a strengthening of the
role of palliative care much earlier in the trajectory of life-limiting
illnesses, particularly those for which the expected course is more
certain, such as some cancers. I think the earlier the concept of
palliative care is introduced, the less intimidating the “end-of-life”
connotation of hospice will be. A patient’s course would feel more
of a continuum, rather than the abrupt shift from treatment to
“hopelessness” that now exists. Just last week, I had a visit with a
woman who had been referred to hospice by her oncologist, and
she was very frightened that her death was imminent, even though
it is not. Her family was equally upset with the physician for fright-
ening the patient so.*
Payment policies The flat daily rate allowed for by the Medicare Hospice
Benefit—which means the hospice receives the same amount regardless
of how many, or how few, services it provides on a given day—is coming
under scrutiny. The methodology and mix of services used to calculate
the daily rate “have not been recalibrated since initiation of the benefit
in 1983” (MedPAC, 2013, p. 263), and are inadequate for some hospice
programs to cover important services (e.g., palliative radiation, intrathecal
delivery of opiates).
Lengths of stay Hospice services have evolved toward serving the two

tails of the longevity curve: a large number of beneficiaries enrolled only a
few days before death and a large number of very-long-stay patients, with
hospice, in effect, serving as an alternative (and one more generously reim-
bursed) to the provision of long-term care in other settings. In some cases,

long stays occur because patients improve under hospice care and outlive
their original 6-month prognosis.
The high proportion of short stays in hospice is troubling on quality-of-
care grounds, while growth in very long hospice stays is troubling on cost
management grounds. The concern arises that incentives in the payment
system may be encouraging some providers “to pursue business models
that maximize profit by enrolling patients more likely to have long stays,”
some of whom may not meet hospice eligibility criteria (MedPAC, 2013,
p. 265). This pattern, which is more common among for-profit hospice
providers (Aldridge Carlson et al., 2012), is also believed to explain some
hospices’ high rates of “live discharges” for long-stay patients as the facility
approaches its aggregate annual cap on Medicare reimbursements.
A concern is the enrollment in hospice of cognitively impaired nursing
home residents. As a result of this trend, the mean length of stay for Medi-
care hospice patients, which was 48 days in 1998, was 86 days in 2011
(CMS, 2013a; MedPAC, 2013). In 2009, the longest average stays were for
patients with Alzheimer’s disease (106 days) and Parkinson’s disease (105
days). By comparison, patients with lung cancer had average stays of 45
days and those with breast cancer 59 days (CMS, 2013a). Among the 10
percent of patients with stays longer than 6 months, the average length of
stay in 2011 was 241 days (MedPAC, 2013).
The dominant and countervailing trend of notable concern, however—
affecting at least 30 percent of all hospice beneficiaries—is stays that are
too short. According to hospice industry figures, the median length of stay
in hospice has steadily fallen, from 21.3 days in 2008 to 18.7 days in 2012
(NHPCO, 2009, 2013), which means that half of hospice patients have
stays shorter than 18.7 days.
To the extent that the Medicare Hospice Benefit is being used for
people with questionable eligibility as a de facto palliative care supplement
to long-term care benefits under state Medicaid programs, the costs of the
Medicare Hospice Benefit are raised artificially, and the costs of this care are
transferred to the federal government. MedPAC has recommended closer
program monitoring to forestall this potential misuse, and greater scrutiny
is occurring (U.S. Department of Justice, 2013). Oversight is considered
especially appropriate for the approximately 10 percent of hospices that
exceed their benefit cap (MedPAC, 2013, p. 275).
The background paper prepared for this study by Huskamp and
Stevenson (see Appendix D) reviews several potential or proposed changes
to the Medicare Hospice Benefit that would affect hospice-related financial
incentives and realign hospice services. Some of these changes were included
in the ACA (see also Huskamp et al., 2010).

The Long-Term Care Environment

People with multiple chronic diseases and frailty need a variety of
long-term services and supports that can improve the quality of their lives,
potentially forestall the need for emergency visits and hospitalizations, and
reflect individual and family desires for care at home for as long as possible.
Someone turning age 65 today has almost a 70 percent chance of
needing some type of long-term care services and supports in their remain-
ing years (HHS, 2014), yet few (only about 10 percent of the elderly)
have private long-term care insurance. The low uptake of existing private
long-term care insurance options may be attributable in part to the avail-
ability of Medicaid, which provides means-tested “public insurance to
many households . . . who could otherwise afford and would be interested
in private insurance coverage” (Senate Commission on Long-Term Care,
2013, p. 23), and the lack of long-term care insurance requires many people
to deplete their assets to become Medicaid eligible.17 The need for new
public and private long-term care insurance options that would stabilize
the financial future of Americans—a neglected corollary to addressing long-
term care services and their financing (IOM, 2013e; Wiener et al., 2013)—is
beyond the scope of this report.
Only one-third of elderly Americans have sufficient assets to pay for
1 year of nursing home care, which in 2012 averaged $81,030 for a semi-
private room and $90,520 for a private room (National Health Policy
Forum, 2013). Home-based care is less expensive, but still costly. Four
hours per day of homemaker and home health aide services, 7 days per
week, costs from $28,000 to $31,000 per year, and such services are not
always available. It is no wonder, then, that long-term care has been called
“the largest uninsured risk faced by the older population” (Norton, 2013;
Spillman, 2012, p. 239).
Many families are caught in the middle: they are too “well off” for
Medicaid, but unable to pay out of pocket to meet their personal care
needs. This is another reason for relying on the acute care system of 911
calls, emergency departments, and hospitals when care needs become over-
whelming. Unlike long-term services and supports, these much more costly
acute care services are covered by Medicare.
Medicare’s benefit structure reflects patients’ health care needs as gener-
ally understood when the program was created nearly a half-century ago.
Today, health and the use of health care services are understood as being
influenced by a broad range of factors beyond those addressed by health
professionals or traditionally covered by health insurers. There are many
17 These assets do not include a person’s home. As long as a house serves as the “principal
place of residence” of a Medicaid applicant (or spouse or certain other close relatives), it is not
factored into the Medicaid eligibility determination, regardless of its value (HHS, 2005, p. 2).

ways to improve quality of life and comfort for people with advanced seri-
ous illnesses and lessen the burden on their family caregivers (Topf et al.,
2013) while preventing predictable crises. The resulting savings in costly
emergency visits, hospitalizations, and even long-term nursing home care
could be redirected toward underfunded and badly needed long-term ser-
vices and supports (Unroe and Meier, 2013).
We got hospice when my mother-in-law died, but only for 2 weeks.

She declined steadily for 2 years before her death, as we bounced
back and forth between hospital, nursing home, and home (with
private-paid caregivers). It was a bad way to go, with much pain,
suffering, and expense for her and our family. There were too many
barriers to getting the care she needed. Medicare pays for all types
of care that is unbeneficial (911 trips to the hospital, certain tests,
treatments, medications, surgeries, and skilled nursing home stays
for rehab, etc.). But it will not pay for the care people actually need
during chronic, progressive illness—custodial care, comfort care,
nursing care. We need to fix this.*
Institutional Long-Term Care

Medicare provides little payment for long-term services and supports,
including personal assistance with activities of daily living (e.g., bath-
ing, dressing, toileting, eating, transferring, and medication management).
Medicare’s sole contribution to nursing home care is in paying for short-
term skilled nursing services aimed at rehabilitation following hospitaliza-
tion and for short-term home health care for the homebound with a “skilled
need.” Post-acute care accounts for about 21 percent of all spending on
long-term services and supports (KFF, 2013b), and its goal is to return
beneficiaries to the highest possible level of functioning. In one analysis,
almost one-third of Medicare beneficiaries used the skilled nursing benefit
in their last 6 months of life, and 1 in 11 died while enrolled in that benefit.
Many such patients may be too frail or ill to return home and would be
well served if the benefit included a stronger palliative care component and
allowed concurrent hospice care (Aragon et al., 2012).
The rehabilitation mission of skilled nursing facilities may conflict with
patients’ medical condition and goals, especially in the last months of life,
when hospice or palliative care may be better matched to their needs. The

decision to place a patient in a skilled nursing program may be based not on

a clinical need for rehabilitative services or patient preferences but on built-
in financial incentives. Some families are unable to provide home care for a
patient in rapidly deteriorating health, but at hospital discharge they must
make a difficult choice. They can choose Medicare payment for 100 days of
room and board and “rehabilitative” care in a skilled nursing facility, but if
they want hospice care and do not qualify for Medicaid, they will have to
pay out of pocket for nursing home room and board (Aragon et al., 2012).
People covered by the skilled nursing facility benefit cannot be enrolled
simultaneously in hospice unless the two services are treating totally unre-
lated medical conditions. Nursing homes and skilled nursing facilities have
an incentive to keep people in post-acute care as long as possible instead
of enrolling them in hospice because once patients are referred to hospice,
they must shift from the generously reimbursed (by Medicare) skilled nurs-
ing benefit to the poorly reimbursed (by Medicaid) long-term care benefit.
Nursing homes have an incentive to hospitalize residents repeatedly
so as to make them eligible once again for the higher-paying skilled nurs-
ing facility program. Indeed, there is some evidence of disproportionately
high rates of potentially avoidable hospitalizations among dual-eligible
residents in skilled nursing facilities and nursing homes (942 per 1,000
person years for skilled nursing facility residents and 338 per 1,000 person
years for nursing home residents). By contrast, people living in the com-
munity had markedly lower rates of potentially avoidable hospitalization
(250 per 1,000 person years for those receiving Medicaid-paid home- and
community-based services, and only 88 per 1,000 person years for those not
receiving those services) (Segal, 2011). A growing literature is finding that
many hospitalizations for patients with dementia, in particular, are avoid-
able and a potential source of system savings (Grabowski and O’Malley,
2014).18 As noted earlier, moreover, frequent transitions between the nurs-
ing home and hospital and back again are burdensome to patients and have
been associated with increased rates of feeding tube insertions, intensive
care unit stays, pressure ulcers, and late enrollment in hospice for residents
with advanced cognitive and functional impairments (Gozalo et al., 2011).
From the standpoint of financially strapped state Medicaid programs
and providers, the cost shift to Medicare and the transfer of patients back
and forth between skilled nursing facilities and hospitals has obvious ap-
peal. From the standpoint of the quality of care for patients and families
and the nation’s total health care spending, it reflects both poor quality and
enormous costs.
18 For example, the Evercare managed care demonstration program enhanced advance care
planning, provided nurse practitioner care, and altered financial incentives, producing fewer
preventable hospitalizations and improved survival with no diminution in the quality of care
(Kane et al., 2004).

Home- and Community-Based Care

Because state rules governing Medicaid do not universally draw Medi-
care’s line between health services and support services, Medicaid is the
main source of payment for the latter. Additional funding for these services
comes through Medicaid’s Home and Community Based Services program.
By 2009, 3.3 million people were participating in Medicaid’s Home and
Community Based Services program, a 60 percent increase in participation
since 2000 (National Health Policy Forum, 2013). AARP policy analysts
are among those who have encouraged states to invest in this program,
making their case primarily on the grounds of cost-effectiveness (AARP
Public Policy Institute, 2008). As more people age into their 70s, 80s, and
90s and need daily help, the demand for long-term care services, including
in-home home health services, will continue to rise (Employment Benefit
Research Institute, 2012). In this context, state Medicaid programs are
giving increasing attention to “rebalancing” efforts aimed at reducing their
long-standing institutional bias (Kassner, 2013)—that is, shifting long-term
services and supports from expensive institutional settings, mainly nursing
homes, to people’s homes. As illustrated in Box 5-1, however, while such
shifts may make sense from the standpoint of both patient desires and pro-
gram integrity, they need to be undertaken with some caution.
“During the late 1970s and early 1980s, the federal government spon-
sored a series of randomized, controlled . . . demonstrations to test the
cost-effectiveness of home and community-based services as a substitute for
nursing home care” (ASPE, 2000, p. 10). The National Channeling Dem-
onstration, funded by the Health Care Financing Administration (HCFA),19
Administration on Aging (AoA), and the Office of the Assistant Secretary
for Planning and Evaluation (ASPE), tested two models for financing and
delivering home- and community-based services (Kemper, 1988). HCFA
and the National Center for Health Services Research (NCHSR)20 spon-
sored more than a dozen state- or region-specific demonstrations. Major
findings from these projects were as follows:
• Targeting program enrollment to those at highest risk of nursing

home placement saves money.
• Home- and community-based services programs can achieve bud-
get neutrality with narrow targeting to the highest-risk groups,
low average benefit levels (taking into account the availability of
informal supports), and an emphasis on high-quality services.
19 HCFA is now the Centers for Medicare & Medicaid Services.

20 NCHSR was a predecessor to the Agency for Healthcare Research and Quality.

BOX 5-1
Learning from Past Institution-to-Community Shifts
Experience with the community mental health services movement of several

decades ago suggests that the shift from institutional to community care should
be closely monitored. In the 1960s and 1970s, the nation’s large, old-fashioned,
and underperforming mental hospitals were closed or greatly reduced in size, and
responsibility for former residents’ continuing service needs was shifted to com-
munity service providers that were neither adequately prepared nor funded to as-
sume this responsibility (Lyons, 1984). Setting these former patients adrift without
appropriate support was a largely avoidable tragedy that contributed significantly
to poor-quality care, high incarceration and hospitalization rates, and the rise of
substance abuse and homelessness (Baum and Burnes, 1993; Yoon et al., 2013).
• Data limitations make designing and conducting research that truly

measures cost-effectiveness—as distinct from “cost shifting” from
one program to another, from state to federal funds, and from for-
mal to informal care—nearly impossible. Cost-effectiveness studies
of these programs typically use only Medicaid expenditure data
and do not consider the impacts of other programs such as Medi-
care and Social Security Insurance.
A recent report summarizing analyses from 38 states, conducted be-

tween 2005 and 2012, found consistently lower average costs for home-
and community-based care than for institutional long-term care. In 2008
in California, for example, “per recipient spending on nursing facilities was
three times higher than for HCBS [home- and community-based services]
($32,406 for nursing facility care versus $9,129 for HCBS)” (Fox-Grage
and Walls, 2013, pp. 6-7). However, many states cap the number of people
who can enroll in the Home and Community Based Services program, and
some states maintain waiting lists for the program; testimony to the Senate
Commission on Long-Term Care suggests that nearly half a million people
are on these lists (Senate Commission on Long-Term Care, 2013, p. 16).
While the state studies varied in approach and should be replicated by in-
dependent researchers, they are important in contributing to state decisions
about program policy.
The cost impact of home- and community-based services is almost
always measured only in terms of Medicaid expenditures. However, ana-
lysts have repeatedly observed the need for a broader analytic framework
along several dimensions. For example, capturing the true cost side of
the equation requires consideration of the services’ impact on other pub-

lic programs, such as Medicare, Supplemental Security Income, and the

Supplemental Nutrition Assistance Program (SNAP). These comprehensive
analyses of expenditures and savings have not been carried out because
acquiring the necessary data is too difficult and expensive. In addition, cost
estimates need to take into account the dollar value of unpaid care provided
by family caregivers.21 Even if it were possible to assess costs adequately,
estimating the benefits (effectiveness) and quality gains of these programs
reliably presents an additional set of methodological challenges.
Movement toward alternatives to nursing homes is also supported by
federal policy makers. In its 2013 report, the Senate Commission on Long-
Term Care, established in 2012, urged a shift away from nursing homes
and toward home care (Senate Commission on Long-Term Care, 2013).
Likewise, the Administration for Community Living, an HHS agency that
includes the Administration on Aging and Administration on Intellectual
and Developmental Disabilities, emphasizes community options for the
elderly (Administration for Community Living, 2013).
Yet while a wide variety of community-based providers try to help
people needing long-term services and supports, the financing and organiza-
tion of these services and supports create barriers to access. “The network
of providers to deliver this support is complex, multifaceted, specialized,
isolated from other services providers, and confusing to the average con-
sumer,” reported the Senate Commission on Long-Term Care (2013, p. 14).
Rarely do service providers assess a patient’s and family’s overall needs
so that they can arrange for the right set of services; instead, patients and
families have access to what is funded by some mix of federal, state, and
local sources, each with its own eligibility rules, limits, and procedures. Just
finding out about available services and resources is a significant challenge.
An especially serious problem is the structural and financial isolation
of the system for long-term services and supports from the health services
sector. As a result, the planning and organization of the two are separate
when patients are in transition across settings, and there are few incentives
to integrate or streamline the two sets of services, despite their obvious
interdependence and potential synergies.
One possible way to bridge the gap between these two service sectors
for some patients and families is through community-based palliative care
programs. As Huskamp and Stevenson (see Appendix D) note, “palliative
care can be introduced at any point during the course of a serious advanced
illness when a patient and family needs [sic] help to manage symptoms and
maximize quality of life.” Insurance coverage for hospice—under Medi-
21 For example, a study of family caregiving for community-dwelling elders in the last year
of life estimated the value of these services as between $22,500 and $42,400 (in 2002), which
the authors note equaled the cost of a home aide (Rhee et al., 2009).

care, Medicaid, and many commercial insurance plans—is the dominant

financing mechanism for community-based palliative care. Models aimed at
bridging the gap, such as community-based palliative care, medical homes,
house calls or home-based primary care programs, and PACE, have demon-
strated effectiveness in improving value (improved quality leading to lower
acute care spending) (Grabowski, 2006; Kamal et al., 2013; Komisar and
Feder, 2011; Unroe and Meier, 2013).
Finally, if efforts to rebalance nursing home and home- and community-
based care are to succeed and more seriously ill people are to be cared for
in their homes, home- and community-based care will need to encompass
certain medical and quasi-medical services. These services include
• case management;
• round-the-clock access to a clinician for advice;
• mental health services;
• respite care;
• comprehensive interdisciplinary primary care;
• medication management; and
• support for basic activities of daily living—eating, bathing, dress-
ing, toileting, and transferring (into and out of bed, a chair, a
wheelchair)—through personal care aides.
Matching Services to Needs for Dual-Eligible Individuals

The nearly 10 million Americans who are dually eligible for both Medi-
care and Medicaid present a particular challenge to the current care system.
These individuals tend to make up the sickest, frailest, poorest, and highest-
cost population served by the two programs (Brown and Mann, 2012).
Because dual-eligible individuals are either 65 and older or perma-
nently disabled and because they are poorer than the general population,
they often have significant long-term care needs (CBO, 2013). As Table
5-5 shows, they account for a significant proportion (roughly one-third)
of expenditures for each program. Some 65 percent of Medicaid spending
for this group is for long-term care (Young et al., 2013). Over the years, a
TABLE 5-5 Dual-Eligible People in Medicare and Medicaid, 2010

Indicator Medicare Medicaid
Share of beneficiaries who are eligible for both programs 1 in 5 1 in 6
Program expenditures for people eligible for both 33% 36%
SOURCE: Young et al., 2013.

number of initiatives, including a new effort under the ACA described later
in this chapter, have been aimed at improving both quality of care and ef-
ficiency for this high-risk population by encouraging care in the community
rather than in nursing homes.
Health care spending by dual-eligible individuals varies considerably.
Two in five people receiving both Medicare and Medicaid generated lower
expenditures than other Medicare beneficiaries, while one in five accounted
for three-fifths of all dual-eligible spending. Fewer than 1 percent of indi-
viduals cost both Medicare and Medicaid high amounts; most individuals
are high cost for only one of the programs (Coughlin et al., 2012). These
findings suggest that dual-eligible individuals living in nursing homes might
be good candidates for palliative care and care management intended to
prevent avoidable hospitalizations, while others, living in the community,
would be good candidates for a medical home or other entity that coordi-
nates and integrates social and medical supports. Program savings resulting
from such interventions are most likely to occur among people who have
functional dependencies, frailty, and/or dementia in the context of one or
more chronic diseases.
Efforts to produce Medicare and Medicaid savings in covering du-
ally eligible people have centered on the twin strategies of enrollment in
managed care programs, such as PACE, and use of care management to
coordinate care (as discussed further below). However, many of these ef-
forts have failed to target those at highest risk and as a result, have not
produced the desired savings, although they “provide strong evidence that
care management might be effective at reducing costs for some subgroups
of dual eligibles, such as those with severe chronic illnesses or at high risk
for hospitalization” [emphasis added] (Brown and Mann, 2012, p. 4).
Organization of Services
As described in Chapter 2, significant problems and burdens accom-
pany each transfer of a seriously ill patient from one care setting to another,
and the large number of such transfers as patients near the end of life has
been documented (Teno et al., 2013). Each such transfer runs the risk of
• poor communication between settings and inadequate transfer of

records, including advance directives (which results in, for exam-
ple, inadequate information about self-care or perplexing changes
in instructions; redundant tests; duplicate, confusing, or conflicting
prescriptions and medication errors; and increased risk of falls,
infection, and delirium—any of which can harm patients and lead
to additional hospitalizations) (Press et al., 2013);

• poor communication between providers across settings, impeding

primary physicians’ ability to properly manage patients under their
care; and
• confusion among patients and family members regarding what to
do, which provider is responsible for what, and whom to consult
when things go wrong.
Better coordination of care is widely perceived as essential to improving

patient outcomes. Not only are people nearing the end of life often treated
in several settings, but also they (and their families) interact with numerous
physicians and other health professionals, are prescribed multiple medica-
tions and treatments that may interact in undesirable ways or be difficult
to administer properly, and face logistical problems in accessing care when
they need such basic services as transportation. In a conclusion still valid
today, the 2001 IOM report Crossing the Quality Chasm notes that one
serious consequence of the poorly organized U.S. health system is the “lay-
ers of processes and handoffs that patients and families find bewildering
and clinicians view as wasteful” (IOM, 2001, p. 28). A renewed focus on
discharge planning, continued access to care and support after discharge,
medication reconciliation, and avoidance of rehospitalizations could im-
prove continuity across settings in a patient-centered, family-oriented way
(Coleman et al., 2006).
Conversely, inadequate care coordination results in avoidable medical
complications and unnecessary hospital readmissions, which by themselves
cost Medicare some $15 billion per year (Tilson and Hoffman, 2012). In
the case of seriously ill children, for example, the lack of after-hours cover-
age in physician offices impels some working parents to seek whatever care
is available, and that is found in costly hospital emergency departments
(Chamberlain et al., 2013).
To the extent any organized attempt at coordination takes place out-
side of hospice, it is typically through “disease management” or more
comprehensive “care management” programs. Often these programs entail
assignment of a specially trained nurse or other health professional to help
a patient with complex needs navigate the system across service providers.
The success of these programs is highly variable, depending on their ability
to select the most appropriate patients, meet needs around the clock, align
supportive and medical services, and flexibly adjust the intensity of service
to changing patient and family needs. Additional key program features
are assessment of and support for family caregiver needs; round-the-clock
access by phone; consistent relationships and communication among the
care coordination team staff, patients, families, and medical providers;
integrated assessment and delivery of both medical and social services;
and generation and mobilization of needed long-term services and sup-

ports (Bass et al., 2013; Brown et al., 2012; Peikes et al., 2012) (see also
the discussion of social services below). If care management initiatives that
include such support services can produce savings when serving people
with severe chronic illnesses or a high probability of hospital admission,
they may also be well suited to people in the final phase of life before they
become eligible for hospice.
A 15-program randomized controlled trial of the Medicare Coordi-
nated Care Demonstration identified six features that appeared to be central
to the limited number of coordination efforts that saved money:
• frequent face-to-face contact between the patient and the care

coordinator;
• occasional face-to-face contact between the patient’s physicians and
the care coordinator;
• the care coordinator’s functioning as the “communications hub”
for the patient’s practitioners;
• use of evidence-based patient education interventions;
• comprehensive medication management; and
• a timely, comprehensive response to transitions between care set-
tings, such as discharge from a hospital to post-acute care (Brown
et al., 2012).
A review of studies on the effectiveness of disease management efforts

within the Medicaid program reveal additional themes:
• Disease management programs were most effective in improving

quality of care and achieving cost-effectiveness for the sickest pa-
tients, including those with comorbidities, underscoring the impor-
tance of targeting interventions to those most likely to benefit from
them.
• Although in-person care management was the costliest interven-
tion, it also was the most effective with high-risk patients, while
less intensive management was appropriate for lower-risk patients.
• Projects that used data mining and predictive modeling to stratify
patients by disease severity and risk were “particularly successful
in designing and delivering [disease management] programs across
chronic disease groups” (Freeman et al., 2011, p. 35).
The studies reviewed varied greatly in the medical conditions and pro-
gram designs addressed and in the kinds and quality of data collected. Nor
were they specifically looking at the needs of patients near the end of life.
However, the general profile of patients with functional dependency, with
multiple chronic diseases and comorbidities, and at risk of hospitalization

and emergency visits was relatively consistent across studies and mirrors the
circumstances of people who may be nearing the end of life.
Beneficial outcomes of successful care coordination found in these stud-
ies included improved medication adherence, reduced hospitalizations and
readmissions, reduced emergency visits, and fewer unnecessary medications.
And disease management programs that reduced hospitalizations by only
10 percent were able to cover their associated program costs (Freeman
et al., 2011). Other meta-analyses have likewise noted improvements in
the quality of care but have produced less persuasive evidence on reduced
health care utilization, except successes in lowering the risk of hospitaliza-
tion, and on health care savings (Mattke et al., 2007). However, improve-
ments in quality of care that are achieved without increasing costs can be
considered successes when such high-risk, high-need recipients are being
served.
In summary, clinician engagement and targeting and tailoring of social
services and their integration with the medical care delivery system appear
to be essential elements of successful disease and care management models
(Freeman et al., 2011; Meyer and Smith, 2008).
Geographic Variations in Service Utilization and Costs

Studies of the costs of care in the last months of life have revealed
marked differences in the utilization and costs of treatments from one geo-
graphic area to another and from one hospital to another. These differences
are attributable in part to local variations in the supply and prices of medi-
cal resources (e.g., doctors, nursing home rehabilitation, home care agen-
cies, hospitals, drugs, medical devices, and procedures) (Commonwealth
Fund Commission on a High Performance Health System, 2013) and to a
lesser extent to patient and family characteristics and preferences (Prigerson
and Maciejewski, 2012).
Medicare payments vary widely among and within localities. Per capita
Medicare spending (that is, the average amount Medicare pays out per ben-
eficiary) varies more than two-fold among different regions of the country,
mainly as the result of differences in the volume of services provided. The
greatest influences on volume differences are the regional supply of physi-
cians and available hospital beds (Dartmouth Atlas of Health Care, 2013).
An IOM committee recently determined that variation in Medicare
spending across and within geographic areas is explained mainly by dif-
ferences in spending for post-acute care, including subacute rehabilitation
in skilled nursing facilities, long-term acute care facilities for ventilator-
dependent Medicare beneficiaries, and home health agencies. If these spend-
ing variations were eliminated, overall spending variation would drop by 73
percent (IOM, 2013a). This finding has important implications for the care

of people with serious advanced illnesses. The management of transitions

from one setting to another may be a more important cost driver than has
previously been recognized, and “a growing body of evidence leads to the
conclusion that clinical and financial integration best positions health care
systems to manage the continuum of care for their complex populations
efficiently” (IOM, 2013a, p. 18).
Financial incentives for nursing homes to hospitalize dually eligible resi-
dents (and then to obtain Medicare’s higher post-acute care skilled nursing
benefit) are similar nationwide; however, state-level data reveal dramatic
variations in preventable hospitalizations for nursing home residents. The
lowest rate of such hospitalizations (65 per 1,000 person years) is found in
Alaska, and the highest (231 per 1,000 person years) in Louisiana, although
this analysis does not control for differences in population health across
states (Segal, 2011). In one consensus of experts, expressed as a percentage
of hospitalizations, a median of 19 percent of hospitalizations of all long-
stay nursing home residents are considered potentially avoidable, with a
range across states of 7-31 percent (Commonwealth Fund, 2013).
Variation in spending does not appear to be related to differences in
quality of care provided or in care outcomes. After an extensive review of
the literature, the IOM committee studying geographic variation in Medi-
care spending found no relationship between quality-of-care indicators
and what Medicare paid for services. If people with chronic illnesses who
live in higher-spending areas had better outcomes in terms of survival or
quality of life, one could argue that similar resources should be expended
in other locales; however, this is not the case (Dartmouth Atlas of Health
Care, 2013; Wennberg et al., 2008).
To the extent that excessive services do not benefit (and may harm)
patients, they represent wasteful and unnecessary expenditures, and there-
fore significant opportunities for both better-quality care and cost savings.
Clearly, in the current environment, with abundant evidence of poor-quality
care and national health expenditures continuing to rise, marked geo-
graphic and interinstitutional variations in expenditures may be a good
focus for analysis of both shortfalls in quality and excess service provision.
THE GAP BETWEEN SERVICES PAID FOR AND WHAT

PATIENTS AND FAMILIES WANT AND NEED
As noted throughout this report, an approach that enabled more people
to remain in their homes or home-like settings in the final stages of life
would better align with the preferences of many patients and families than
the current system. And a significant barrier to improving the quality of
end-of-life care and controlling costs is that the mix of services currently
delivered and paid for fails to provide for precisely those needs that drive

repeated reliance on the emergency and acute care systems: round-the-clock

access to meaningful help, house calls and home care, caregiver support,
and long-term services and supports. Although some states have used the
demonstration and waiver authorities under Medicare and Medicaid to cre-
ate a more comprehensive continuum of services for the elderly and people
who have disabilities, the nation is far from achieving an easily accessible,
reliable system of care for people who have advanced serious illnesses and
are nearing the end of life. Clearly, significant changes in the approach to
service delivery would be needed to effectively integrate traditional medical
care and social services.
Impact of Social Services on Health Outcomes

Abundant evidence reveals the powerful role of social and behavioral
factors in health and health spending in contexts other than end-of-life
care (Farley, 2009; Marmor et al., 1994; McGinnis and Foege, 1993; U.S.
Burden of Disease Collaborators, 2013). Research conducted over several
decades has established that health care in itself plays a much smaller role in
the health of a population than a range of other factors related to behavior
and socioeconomic status. Indeed, recent analyses attribute the paradoxi-
cally high rate of health care spending and inferior health outcomes in the
United States relative to other developed countries to the lack of integration
of health and social support programs (Bradley and Taylor, 2013; Shier et
al., 2013). Despite its position roughly in the middle in terms of total so-
cial22 and medical spending per capita, the United States ranks 27th out of
40 nations in life expectancy, according to data from the Organisation for
Economic Co-operation and Development (OECD). And while the United
States is roughly in the middle relative to other OECD countries in total
health and social services spending as a percentage of GDP,23 the ratio
of social services spending to health services spending is markedly lower
relative to other nations. These different spending patterns may reflect
countries’ different histories, cultures, attitudes toward social spending,
and political milieus.
In a changing health care landscape, new tools, approaches, and pay-
ment models are making it easier and more advantageous than ever for
22 The OECD social expenditure database includes nations’ expenditures for such programs
as pensions and retirement, home health, and other benefits for the elderly; pensions, sick
leave, residential care, and rehabilitation for people with disabilities; and family allowances
and maternity leave (OECD, 2014).
23 The figure for the United States is 25.4 percent. By comparison, the figure for Sweden is
33.2 percent and for Ireland is 18.2 percent. At the bottom for spending in these two categories
are Chile, Estonia, Korea, Mexico, and Turkey, each of which spends a total of 15 percent of
GDP or less in these two categories.

providers and health systems to meet the social needs of their patients
(Bachrach et al., 2014). Interventions that address patients’ social needs
have been shown to positively impact patient outcomes and satisfaction
with care.
The committee supports the expansion of social support for people
with advanced chronic illnesses with functional debility and careful assess-
ment of ongoing pilot programs focused on doing so (Shier et al., 2013).
Much can be learned from those efforts about the impact of these services
on health, as well as the means chosen to determine clients’ service needs,
establish eligibility, manage costs, and ensure quality, all of which can guide
future programming.
The Importance of Social Services

In this report, the term “social services” refers to a rather modest but
essential set of services not generally considered part of health care. A core
list of commonly needed services includes the following:
• caregiver training and support,

• retrofitting of the home for safety and mobility,
• meals and nutrition services,
• family respite, and
• transportation.
Some of these services are provided through Medicare Advantage plans

and through Medicaid. Some could be provided through expansion of the
Older Americans Act, which currently is underfunded to meet its potential.
And some could be provided through relatively low-cost, volunteer-staffed
efforts if they were implemented effectively with training, oversight, and
coordination with a person’s needs. For example, health insurance counsel-
ing, legal and financial counseling, and bill payment services currently are
offered by many community organizations through volunteers, consumer
credit counseling programs, and representative payee programs. Volun-
teerism is a long-standing component of hospice.
Social services may be especially important for the sickest and most
vulnerable individuals in a population, whose multiple chronic conditions,
pain and other serious symptoms, functional dependency, cognitive impair-
ment and other mental illnesses, frailty, and high family caregiver burden
(Smith et al., 2010; Walke et al., 2006) converge to drive the high use of
health care services (Komisar and Feder, 2011). Adequate and relatively
inexpensive social services could lower demand for expensive health care
services for some people nearing the end of life. For example, providing
adequate caregiver training, eliminating safety risks in the home, or provid-

ing nutrition services could prevent many situations that lead to 911 calls,
emergency department visits, and hospitalizations (Bachrach et al., 2014;
Shier et al., 2013). In addition, sufficient support for caregivers at home
might prevent the burnout that leads to those calls, visits, and hospitaliza-
tions, as well as to long-term institutionalization (AoA, undated; Reinhard
et al., 2012).
Some social services could be provided through replication of successful
private-sector models in populations served by managed care organizations
and, eventually under the ACOs encouraged under the ACA. In this way,
as different approaches to providing, tailoring, and targeting social services
demonstrated their effectiveness, successful models could be expanded to
cover additional population groups and to include additional services. At
present, one of the most promising groups in which to expand these mod-
els is the dual-eligible population, for whom both great need and funding
mechanisms exist.
How would such a service expansion be paid for? The potential savings
that would result in the areas of hospital care and emergency services could
exceed the cost of expanded social services. In addition, some social services
themselves might produce net savings. For example, providing an elderly
person daily meals is much less costly than the medical crisis and nursing
home placement that result from the consequences of malnutrition (Thomas
and Mor, 2013); likewise, providing an air conditioner for an elderly person
with asthma is much less expensive than repeat hospitalizations.
Whatever menu of social services is available, at the top of the list
should be an assessment of patient and family needs, resources, home
environment, and receptivity to assistance (Feinberg, 2012), as well as aid
in accessing appropriate benefits. The Senate Commission on Long-Term
Care recommended “development and implementation of a standardized
assessment tool that can produce a single care plan across care settings
for an individual with cognitive or functional limitations” (Senate Com-
mission on Long-Term Care, 2013, p. 43). This approach is the essence of
patient-centeredness.
Many of the services listed above (and discussed in the following sub-
sections) may not be needed every day, and they support the caregiver as
well as the patient. Keeping the family confident, rested, informed about
what to expect and how to handle it, and emotionally supported is essential
to maintaining a seriously ill patient in the home. Through the grants to
states provided by the National Family Caregiver Support Program under
the Older Americans Act, social services are received by only about 700,000
caregivers annually. States work in partnership with area agencies on aging
and other local community-service providers to offer information about and
assistance in obtaining available services; individual counseling, organiza-
tion of support groups, and evidence-based caregiver training; respite care;

and limited supplemental services. The Administration on Aging’s national

caregiver surveys indicate that these services improve caregiving and “can
reduce caregiver depression, anxiety, and stress and enable them to provide
care longer, thereby avoiding or delaying the need for costly institutional
care” (AoA, undated).
Caregiver Training and Support

As described in Chapter 2, family caregivers are essential in managing
the health and social service needs of patients still living at home and bear
a strong burden in doing so. Training in the responsibilities of caregiving
can help. In a large online survey of a nationally representative sample of
almost 1,700 people caring for family members with multiple health prob-
lems, almost half of respondents said the training they received had positive
effects on the care recipient, including avoiding nursing home placement
(p <0.05). Yet such training is, at best, scanty. Some 47 percent of caregiv-
ers had never received any training regarding medication management24;
42 percent reported they had to learn wound care on their own; and 37
percent believed more training would be helpful. (These data apply to all
caregivers, not just those caring for a family member near the end of life.)
Retrofitting of the Home for Safety and Mobility

Publicly funded health programs generally do not cover home modifi-
cations for safety and wheelchair access, for example. The home can be a
dangerous place for patients who are frail or at risk of injuries and for the
growing number of patients with progressive cognitive disorders. (Fully 80
percent of the care of people with Alzheimer’s disease is provided “free” by
family and friends [Horvath et al., 2013].) A randomized controlled efficacy
trial of an intervention designed to give informal caregivers easy-to-read
information and resources to minimize home injuries found significantly
less risky behavior and fewer injuries (p ≤0.000) among members of the
intervention group compared with controls. Because of the high costs of
care for frail elders who experience falls, wandering, injuries in fires, and
so on, even “small effect sizes translate into clinically relevant findings”
(Horvath et al., 2013, p. 6).25
24 Medication management included administering intravenous fluids and injections. Most
care recipients took several medications: almost half took 5-9 different prescription medica-
tions, almost 20 percent took 10 or more prescription medications, and almost three-quarters
took one or more over-the-counter drugs or supplements as well (Reinhard et al., 2012).
25 The intervention was designed to require little, if any, professional staff time, and not
counting the occasional need for a piece of specialized equipment, such as a tub transfer bench,
the cost per family of the Home Safety Toolkit booklet and sample items was $210.

Meals and Nutrition Services

Buying food, cooking, and preparing meals are essential daily activi-
ties that become more difficult when one is caring for someone with an
advanced serious illness living at home. Forty-one percent of caregivers in
the AARP survey cited above were involved in preparing food for special
diets, suggesting a need for nutrition counseling. This task involves more
than “help with meals” and may include meal planning and cooking, more
complicated and expensive food shopping, precise measurement, and labo-
rious feeding for patients who have trouble swallowing. More than one-half
of family caregivers surveyed found mealtime tasks difficult to carry out
(Reinhard et al., 2012).
As a striking example of the impact of social services, results of a recent
study suggest that among ostensibly “low-need” people aged 60 and older,
home-delivered meals could mean the difference between living at home
and needing nursing home placement (Thomas and Mor, 2013).26 For
almost 60 percent of the study subjects, home-delivered meals provided at
least half of their daily food intake. The analysis revealed that if every state
increased the number of seniors receiving home-delivered meals by a mere
1 percent, the resultant decline in the number of nursing home residents
would yield initial savings to state Medicaid programs overall of more than
$109 million per year. Ten states would save more than $3 million, and half
would save at least $1 million.
The fragility of the nation’s food programs for the elderly was demon-
strated by the 2013 cuts to the nutrition programs under the Older Ameri-
cans Act resulting from the federal budget sequestration. These programs
expected to lose $41 million in federal funding, equivalent to the cost of
19 million meals (MOWAA, undated).
Family Respite
The shift to encouraging care at home cannot be accomplished suc-
cessfully without addressing the concomitant need to support family care-
givers. Burnout “is the point at which caregivers are often no longer able
to continue in their caring roles and care recipients are at greatest risk of
institutionalization” (Lilly et al., 2012, p. 104). Much has been written
about the problem of caregiver burden and burnout, but the programmatic
changes and investments that would prevent and ameliorate the problem
fall short. The Senate Commission on Long-Term Care made detailed
26 Among those included in this study, 70 percent were at least 75; 40 percent needed help
with bathing, dressing, eating, using the toilet, and transferring into or out of a bed or chair;
and 85 percent needed help with light housework, taking medications, managing money, and
shopping for groceries.

recommendations about ways to strengthen supports for family caregivers

(Senate Commission on Long-Term Care, 2013, p. 51).
Transportation
The accretion of family needs not adequately addressed in the com-
munity can influence the decision to admit a person to long-term care. An
analysis of factors affecting that decision, conducted within the Connecticut
Home Care Program for Elders (which serves approximately 14,000 state
residents aged 65 and older), identified a lack of transportation for both
medical and nonmedical purposes as one of these factors (Robison et al.,
2012). Existing programs for meeting this need often have limitations,
such as not transporting people across county or other jurisdictional lines,
not providing assistance in lifting or transferring the patient from home to
vehicle along with the transportation, or permitting patients to be accom-
panied by only certain categories of support personnel.
A proven approach to meeting this fundamental need was tested in
the Cash and Counseling demonstration program, which directed cash to
disabled beneficiaries with which to hire and direct their own workers.27
The program served Medicaid recipients with a range of disabilities across
the age spectrum, not specifically the end-of-life population. In a random-
ized trial, this program showed that moderate to large reductions in unmet
transportation needs could be accomplished and that participants were
highly satisfied with the transportation assistance received (Carlson et al.,
2007). The Cash and Counseling program is now active in 15 states.
Comprehensive Approaches
A review of seven innovative U.S. care models suggests ways in which
social issues facing people with complex medical needs can be addressed
(Shier et al., 2013).28 The individual projects used different designs and
collected different data, yet all showed a number of positive outcomes,
including “encouraging indications that greater attention to social supports
may benefit patients and payers alike” (Shier et al., 2013, p. 547). All of
27 The Cash and Counseling program allowed participants to purchase a range of services.
Under the program, participants “appeared to receive care at least as good as that provided by
agencies, in that they had the same or an even lower incidence of care-related health problems”
(Carlson et al., 2007, p. 481).
28 The models are the Vermont Blueprint for Health, Senior Care Options (Boston), Health-
Care Partners Comprehensive Care Program (California), Mercy Health System (Pennsylva-
nia), Geriatric Resources for Assessment and Care of Elders (GRACE) (Indianapolis, Indiana),
Care Management Plus (Utah), and the Enhanced Discharge Planning Program (Chicago,
Illinois).

the programs conducted baseline health and social assessments, developed

individualized care plans, and made referrals to or arranged for social ser-
vices. They used interdisciplinary care teams, closely involved primary care
clinicians, and used electronic records. Most also used standardized inter-
vention protocols, provided specialized training for service providers, and
conducted ongoing monitoring. As these models and others develop under
the ACA, their impact on both the quality and costs of care may provide
insights to inform the development of new programs.
THE CHANGING HEALTH CARE SYSTEM:

FINANCING AND ORGANIZATION
The financing and organization of the U.S. health care system are un-
dergoing significant changes that have major implications for end-of-life
care. These changes are resulting from the ACA, as well as from private-
sector payment initiatives and state policies.
Changes Under the Affordable Care Act

Changes in financial incentives and organizational arrangements result-
ing from the ACA could have wide-ranging effects on Americans nearing
the end of life. Specific opportunities arise from the new arrangements
that involve risk sharing by Medicare providers, including ACOs, patient-
centered medical homes, and bundled payments, as well as recently in-
stituted penalties for 30-day readmissions, hospital mortality, and poor
patient experience scores. These and other innovations under the ACA
have spurred interest, discussed earlier, in meeting the needs of the nation’s
sickest and most vulnerable patients in their own homes and communities
as an alternative to costly emergency department visits, hospital stays, and
institutional care.29
In addition, the new CMS Innovation Center has the broad goal of
working toward better care for patients, healthier communities, and lower
costs through improvements in the system of care. The center’s priorities
are testing new payment and service delivery models, evaluating results and
promoting best practices, and working with diverse stakeholders to develop
new models for testing.
29 For a detailed list of the ACA provisions affecting a related area—cancer care—see IOM
(2013d, pp. 85-90). For detailed information that includes citations of specific statutory provi-
sions, see Meier (2011, pp. 367-369).

Expansion of Home- and Community-Based Services

To accelerate the long-term trend of expanding home- and community-
based services, described earlier, the ACA originally included a Community
Living Assistance Services and Supports (CLASS) Act, which would have
instituted a voluntary, national, federally administered long-term care in-
surance program. Implementation of this program was abandoned in 2011
because of persistent concerns about its costs and sustainability (Appleby
and Carey, 2011).
Nevertheless, the ACA attempts to counter Medicaid’s continuing in-
stitutional bias by supporting home- and community-based services (Miller,
2012). For example, the Balancing Incentive Payments program provides
grants to states for increasing access to noninstitutional care. The “Money
Follows the Person” Rebalancing Demonstration Grants program has been
strengthened and expanded. By the end of 2012, it had helped only a small
number of people—around 31,000—with chronic conditions and disabili-
ties transition from institutions to the community. It now has the participa-
tion of 44 states and the District of Columbia (CMS, undated-b).
The Financial Alignment Initiative

Among the most important provisions of the ACA with the potential
to effect major changes in care for people with serious advanced illnesses
and to generate cost savings is the establishment of the federal Medicare-
Medicaid Coordination Office. This office is charged with facilitating the
integration and alignment of federal Medicare and state Medicaid funding
into a single source of financial support (CMS, 2013c). The office’s State
Demonstrations to Integrate Care for Dual Eligible Individuals program,
starting in 15 states, is aimed at breaking down payment silos by provid-
ing funds from both programs to an insurer or provider group that agrees
to accept risk or participate in shared savings, and that may then match
these dollars to patients’ social and medical needs (CMS, 2012; Gore and
Klebonis, 2012). This merging of funding streams creates an opportunity
and an incentive for state Medicaid programs to seek efficiencies in care
delivery for dual-eligible individuals, as opposed to the problematic cost
and care shifting that currently occurs.
In a separate Financial Alignment Initiative, CMS will test two mod-
els that can be used by states to better integrate primary, acute, behav-
ioral health, and long-term services and supports for Medicare-Medicaid
beneficiaries:
• Under the capitated model, a state, CMS, and a health plan enter
into a three-way contract, and the plan receives a prospective

blended Medicare and Medicaid payment to provide comprehen-

sive, coordinated care.
• Under the managed fee-for-service model, a state and CMS enter
into an agreement by which the state can benefit from savings
resulting from initiatives designed to improve quality and reduce
costs for both Medicare and Medicaid (CMS, 2014a).
Not all states are expected to participate in this program, and those that
do may find it difficult to coordinate medical and long-term services and
supports for the highest-risk participants. At present, individuals who enroll
in hospice are excluded from these alignment projects.
Bundled Payments
Another policy trend is the development and promotion of alternatives
to fee-for-service reimbursement so as to “maximize good clinical out-
comes, enhance patient and physician satisfaction and autonomy, and pro-
vide cost-effective care,” as well as to promote evidence-based care (Rich
et al., 2012; Schroeder and Frist, 2013, p. 2029). A prime example is the
development of bundled payment approaches that cover episodes of care.
Instead of reimbursing each provider separately, bundled payment systems
pay a single price for a bundle of defined and related services from mul-
tiple providers associated with a single episode of care. In theory, bundled
payments eliminate incentives to maximize reimbursement that were arti-
facts of the siloed payment system. Depending on which community-based
services are included in the bundle, they may reduce cost shifting between
Medicare and Medicaid. They are also expected to provide new incentives
for greater care coordination and increased efficiency.
At present, CMS’s Bundled Payments for Care Improvement Initiative
specifically excludes hospice services (CMS, 2013d). These services may
eventually be included in appropriate bundles if ways can be found to risk-
adjust for the hospice population (Dobson et al., 2012).
The committee notes that new payment approaches have almost always
been accompanied by unintended consequences as those affected seek to
maximize revenues under the different rules and arrangements. Bundled
payments could create perverse incentives affecting health care expendi-
tures, such as incentives to increase the volume of bundled episodes and to
make greater use of services not included in the bundle. They could also
lead to problems in quality and access, such as stinting on care or selecting
against patients with higher likely costs (Feder, 2013; Weeks et al., 2013;
Wilensky, 2014). Various strategies for forestalling these potential negative
effects are being discussed (see Appendix D).

Accountable Care Organizations

The ACA encourages the development of ACOs, which CMS describes as
groups of doctors, hospitals, and other health care providers, who come
together voluntarily to give coordinated high quality care to their Medicare
patients. The goal of coordinated care is to ensure that patients, especially
the chronically ill, get the right care at the right time, while avoiding un-
necessary duplication of services and preventing medical errors. (CMS,
2013e)
Under the Shared Savings Program, Medicare will continue to pay

individual providers and suppliers for specific items and services as it cur-
rently does under the Medicare fee-for-service payment system. In addi-
tion, CMS will develop a performance measurement benchmark for each
ACO to determine whether it qualifies to receive shared savings (or, for
“pioneer” ACOs [see below] that have elected to accept responsibility for
losses, whether the ACO will be held accountable for those losses). The
benchmark is an estimate of what the total Medicare Parts A and B fee-
for-service expenditures would have been absent the ACO and will take
into account beneficiary characteristics and other factors that may affect
health care service needs (the benchmark does not take into account the
social environment or functional status of the patient, except that he or she
is eligible for Medicaid) (CMS, 2013e). This feature is complicated by the
fact that ACOs cannot prevent enrollees from seeking care from providers
that are not part of the ACO.
ACOs update the original health maintenance organization concept
and could prove extremely helpful to people with advanced serious ill-
nesses given the importance of effective care coordination to high-quality
care, as discussed earlier (Berwick, 2011). Medicare offers several ACO
programs:
• As of December 2013, the Medicare Shared Savings Program in-

cluded more than 360 ACOs serving more than 5.3 million Medi-
care beneficiaries. ACOs and Medicare share any savings they
achieve by lowering the growth in health care costs and must meet
established standards for high-quality care.
• The Advance Payment ACO Model is a supplementary incentive
program for selected participants in the Shared Savings Program.
It involves 35 smaller ACOs (rural and physician based) that lack
access to capital for investing in infrastructure and care coordina-
tion. These ACOs receive an advance on the shared savings they
are expected to earn that reflects both fixed and variable start-up
costs.

• Beginning in 2012, the Medicare program initiated demonstrations

that entailed contracting with a subset of pioneer ACOs, enabling
them to move more rapidly from a shared savings to a population-
based payment model (see Appendix D). These pioneer ACOs
must assume the risk for any losses they incur (that is, if their cost
increases exceed those of regular fee-for-service Medicare in their
locale); however, if their cost increases fall below those of fee-for-
service Medicare by a statistically significant amount, they share
those savings with the Medicare Trust Fund in the form of bonus
payments.
In 2011, almost one-third of patients in the full complement of ACOs

were aged 80 or older, and the average (mean) age was 73.5. Sixteen to 17
percent of enrollees were eligible for Medicaid. Diabetes was their most
common chronic condition, affecting around 30 percent (Epstein et al.,
2014).
In their first year of operations, the 32 pioneer ACO plans did achieve
some measurable quality improvements and had mixed financial results.
Overall, they saw a 0.3 percent cost growth for their nearly 670,000
beneficiaries, compared with a 0.8 percent cost growth in fee-for-service
Medicare in the same local markets. Savings were not evenly distributed
across plans, with 18 achieving below-budget spending and 14 experienc-
ing above-budget spending (Patel and Lieberman, 2013). Seven of the
plans abandoned participation in the pioneer program and switched to the
regular Medicare Shared Savings Program, and two abandoned their ACO
efforts entirely, in part because of their objections to the program’s quality
metrics and administrative complexity.
Because these programs and markets are in transition, it is too early
to make more than a preliminary judgment about the impact of ACOs on
health care quality and costs. Nonetheless, experience to date suggests that
the ACO model remains attractive to many providers, and that most are
achieving both quality improvements and some reductions in cost growth.
Overall first-year savings for the nearly 670,000 beneficiaries participat-
ing in the pioneer ACO program were estimated at $155.4 million (L&M
Policy Research, 2013). These gains were made despite the program’s
being “incredibly ambitious, even for the most advanced health systems”
(Damore and Champion, 2013).
Proposed ACO improvements include new CMS policies to encourage
more physicians and Medicare beneficiaries to participate, perhaps by rais-
ing Medicare premiums for nonparticipating beneficiaries, and improving
ACOs’ ability to manage care (Lieberman, 2013). A specific problem for
people with advanced serious illnesses is that beneficiaries placed in post-
acute care or institutional settings following hospitalization may no longer

belong (or be “attributable”) to the ACO if those settings are not partici-
pants in the ACO. As a result, ACA-related efforts to coordinate care could
omit a vulnerable and costly population.
Other Provisions of the Affordable Care Act

Hospice and home care Changes to hospice under the ACA include a
demonstration program on value-based purchasing and a demonstration
program to study concurrent care for Medicare beneficiaries. CMS an-
nounced in March 2014 that it will allow up to 30 hospices to participate in
a 3-year concurrent care program starting in summer 2014 (CMS, 2014b).
“Concurrent care” would allow Medicare hospice patients to continue
receiving cure-oriented treatments. Under one provision of the act that has
been implemented, children enrolled in hospice and covered by Medicaid
now can obtain simultaneous disease treatment (Rau, 2013).
Medicare payments for both hospice and home care are being reduced.
Hospice payments will decline by 11.8 percent over the next decade—this
despite the claims of advocates that hospice’s highly labor-intensive model
does not lend itself to the productivity (and savings) gains possible in other
components of the health care system.30 For home care, reductions have
been instituted for standard episode payments, unusually costly “outlier”
cases, and annual updates. Reduced payments to these community provid-
ers may have implications for access to and quality of care for beneficiaries
as smaller programs close and larger ones gain incentives to stint on costly
treatments.
Pay-for-performance In accordance with the principle of pay-for-

performance, the ACA penalizes hospitals that experience higher-than-
expected readmission rates within 30 days of patient discharge. This policy
places a premium on discharge planning and coordination of posthospi-
talization care, but it also could hurt inner-city public hospitals that treat
sicker and poorer patients with fewer family or community resources (Press
et al., 2013). Physicians, too, are under greater pressure to provide value,
as defined by conformance with both quality measures and cost controls.
Gaps in the Affordable Care Act

From the standpoint of care of patients with advanced serious illnesses,
the ACA has several noteworthy gaps:
30 This cut is in addition to a phase-out of the Budget Neutrality Adjustment Factor used
to calculate the Medicare hospice wage index, and will result in an additional reduction in
hospice reimbursement of approximately 4.2 percent (NHPCO, undated).

• It does not measure or reward greater access to coordinated, com-

passionate care for people with advanced serious illnesses. At pres-
ent, moreover, it specifically excludes hospice beneficiaries from
some of the major innovations under the act, which means oppor-
tunities to learn from—and improve—their care experiences are
being lost.
• MedPAC has explored carving in hospice care under Medicare Ad-
vantage plans, thereby making them responsible for hospice costs
(Harrison and Neuman, 2013). Doing so might pave the way for
concurrent care, which at present remains a gap under the ACA.
• The act is not required to include home-based palliative care as a
covered service.
• The act does not improve prospects for a more effective or finan-
cially stable long-term care system that better matches patient and
family needs with social services.
• The act establishes no mechanism for reimbursing clinicians for
the extensive and repeated conversations necessary to engage in
advance care planning with patients and families or for requiring
that they honor patients’ preferences regarding end-of-life care.31
The ACA is not the last word in this round of health care reform, just
as Medicare was not the last word in health care financing for the elderly
in 1966 (Skocpol, 2010). Even since the new law’s enactment, health policy
experts have proposed changes,32 some of which could have a positive effect
on care at the end of life if they
• were flexible and comprehensive, tailoring the mix and intensity of

services to patient and family needs as they evolve over time;
• improved accessibility, reaching underserved populations and en-
abling early palliative care for those not imminently dying by
31 Excellus BlueCross BlueShield has established an enhanced reimbursement program for

physicians trained to conduct more thorough advance care planning discussions for seri-
ously ill patients. This program recognizes the amount of time needed for such discussions
and the fact that more than a single discussion may be required (http://www.compassionand
support.org/index.php/for_professionals/molst_training_center/provider_training [accessed
December 16, 2014]).
32 One proposal would create a new Medicare option called “Medicare Essential.” This
proposal would combine Medicare Parts A, B, and D and supplemental “Medigap” coverage
to save costs, improve coordination of care, and promote shared decision making (Davis et
al., 2013). Another proposal, developed by the Bipartisan Policy Center’s Health Care Cost
Containment Initiative, would establish Medicare Networks as a more full-service alternative
to ACOs (Daschle et al., 2013). A new Medicare Comprehensive Care program would be
established under another major reform proposal, which would also seek to make Medicaid
more “person-focused” (Antos et al., 2013).

establishing required standards for accreditation and participation

in Medicare or Medicaid;
• provided for high-quality medical care in the community, through,
for example, telemonitoring, round-the-clock access to a nurse, and
medication management;
• provided nonmedical support services, including those described
earlier in this chapter; and
• entailed measurement of quality of care for those with advanced
serious illnesses, multiple chronic conditions, frequent transi-
tions, and functional impairments to ensure accountability and
transparency.
Private-Sector Payment Initiatives

Many reform efforts focused on care of people with advanced serious
illnesses are taking place in the private sector. Private insurers and man-
aged care plans are free to experiment broadly with strategies for reduc-
ing their costs by affecting the behavior of both enrollees and providers,
whereas government programs generally focus only on the latter. A frequent
shortcoming is the lack of rigorous independent evaluation of these private
initiatives in terms of access, quality, and costs.
One of the most promising initiatives coming out of the private sector—
one that meets at least the first three principles on the above list—is con-
current care, a model that allows patients to receive hospice-like services
and disease treatments at the same time. This model avoids the perceived
“terrible choice” between conventional treatment and comfort measures.
Examples of the concurrent care approach include the following:
• Highmark, Inc. (Pittsburgh, Pennsylvania) has a program titled

Advanced Illness Services: Enhancing Care at End of Life, which
serves very ill Medicare Advantage beneficiaries who live at home,
use outpatient department services, and wish to receive palliative
care. Patients with an approximately 1-year prognosis receive up
to 10 mainly consultative home or outpatient visits by hospice or
palliative care professionals concurrently with disease treatment.
• Blue Cross Blue Shield of Michigan expanded hospice eligibility to
patients with a life expectancy of up to 12 months rather than the
usual 6, and permits concurrent care (BCBSM, 2009).
• Kaiser-Permanente deploys an interdisciplinary in-home palliative
care team to provide concurrent care. The team includes physicians,
nurses, and social workers, supplemented as needed by chaplains
(if desired); bereavement coordinators; home health aides; pharma-
cists; dietitians; physical, occupational, and speech therapists; and

volunteers. A study of the impact of this model found that patients

were satisfied with the care they received, and the likelihood of
dying at home increased, while emergency department visits and
hospitalizations declined. The result was significantly lower costs,
after controlling for survival, age, severity of illness, and primary
disease (Brumley et al., 2007).33
• Sutter Health, based in northern California, has developed an Ad-
vanced Illness Management program to coordinate palliative care
across settings, including hospitals, physician offices, and patients’
homes. The program also seeks to boost hospice utilization and
duration. Initial evaluation results included improved satisfaction
on the part of patients, families, and physicians, as well as substan-
tial savings. In this program, African American and white patients
were equally likely to choose hospice (Meyer, 2011). The Sutter
approach retains fee-for-service reimbursement (AHRQ, 2013).
• Aetna’s concurrent care model, which has been in place for about
a decade, uses a comprehensive case management approach. Nurse
care managers with special training in palliative care work with
Medicare Advantage and commercially insured beneficiaries hav-
ing a prognosis of about 12 months. They coordinate care, pro-
vide education and support, and help in symptom management.
Beneficiary and family satisfaction is high. Hospice utilization was
more than double for the case management group (70 percent)
compared with a control group of patients (30 percent) (Spettell
et al., 2009). Medical costs for people in the program were ap-
proximately $17,161—22 percent less than costs for a matched
historical control population ($22,030) (Krakauer et al., 2009).
State Policies
The committee did not review in detail opportunities for states to im-
prove systems of care for people nearing the end of life. Clearly, however,
state actions in a number of domains can affect the quality, availability, and
costs of care for people with advanced serious illnesses and nearing death
(Christopher, 2003). Many states have initiated coalitions to contribute to
policy reform at the state level and have engaged in a variety of activities
33 In this study, researchers found a strong trend toward shorter survival in the palliative
care group (196 days versus 242 days), potentially attributable to undetected problems with
randomization between the palliative care and usual care groups, how patient preferences
may have changed over time, or closer adherence to patient preferences in the palliative care
group. This result is in conflict with other research indicating longer survival in palliative care
programs (Temel et al., 2010; see Chapter 2), and further evaluation of the program model
may be necessary to explain this finding.

to improve clinical care, program administration, and professional educa-

tion; increase access to quality end-of-life care; increase the proportion of
people in the state who have engaged in advance care planning; and sup-
port a range of public policies to further these efforts. Twenty-four state
and local coalitions were funded under the Robert Wood Johnson Founda-
tion’s Community-State Partnerships to Improve End-of-Life Care program
(RWJF, 2004).
Other examples of state policies that can have a significant effect on
end-of-life care include
• rules affecting Medicaid eligibility and benefits;

• rules governing state Medicaid managed care programs;
• low Medicaid reimbursements that make it difficult for recipients
to obtain physician care;
• regulation and oversight of health facilities (for example, nursing
homes, hospice, home health programs, and hospitals), including
certificate-of-need programs;
• regulation of emergency medical services;
• scope-of-practice laws that limit the roles and responsibilities of,
for example, nurse practitioners;
• programs and policies that support patients at home and their
caregivers;
• laws enabling Physician Orders for Life-Sustaining Treatment
(POLST; see Chapter 3) or otherwise covering advance care plan-
ning; and
• approaches to malpractice enforcement conveying the impression
that providers must “do everything for a patient.”
Although there is evidence that concerns about malpractice liability

affect physician practices, including, for example, their adherence to pa-
tients’ advance directives (see Chapter 3), some physicians’ anxiety about
being sued may not be based in fact. A Congressional Budget Office study
estimated that broad malpractice reforms would reduce national health
care spending by only 0.5 percent (CBO, 2009). To encourage physicians
to honor informed patient and family preferences for care at home, states
could establish “safe harbors” protecting clinicians from liability in cases
in which unwanted treatments are avoided in accordance with advance care
plans. In general, fear of malpractice litigation should not be a compelling
practical reason to refuse to honor patients’ preferences. Family lawsuits
against physicians who honored a patient’s preference for less aggressive
care are virtually nonexistent (Meisel, 2013), and to the contrary, are most
likely to occur when a patient or family does not feel respected or heard
by a physician.

THE NEED FOR GREATER TRANSPARENCY

AND ACCOUNTABILITY
The IOM report HHS in the 21st Century (IOM, 2009) includes the
recommendation that the agency improve accountability, which the report
describes as requiring a systematic approach encompassing the establish-
ment of critical, measurable goals and clear lines of responsibility; regu-
lar reporting and assessment to gauge progress; and corrective action as
needed. The report suggests that this management approach is relevant
across HHS, within a framework that defines who is accountable to whom
and for what purpose. At no time is attention to these tasks more important
than when a fundamental overhaul of policy has been initiated, as has oc-
curred with the passage and implementation of the ACA.
As this chapter has shown, past policy initiatives embedded in Medi-
care, Medicaid, and other federal programs have had many unintended
negative consequences—mainly in the forms of perverse and misaligned
incentives and uncoordinated services—that have hampered high-quality
care for people who have advanced serious illnesses and are nearing the
end of life. A time of change is a time to attempt to do better—to establish
whether the system is providing value for current patients and to support
continued improvements in care for patients in the future. The urgency of
undertaking this effort rests on the confluence of three major trends impel-
ling change: the rising complexity and fragmentation of modern health care,
unsustainable cost increases, and outcomes that do not reflect the system’s
potential (IOM, 2013b).
The concept of value reflects a relationship between quality and costs.
A high-value health care intervention is one that is that markedly improves
quality at low cost (for example, immunizations). A low-value intervention
is one that is of little to no benefit (or even harmful) and is high cost. In
the current context, it is clear that recurrent hospitalizations for nursing
home residents with advanced dementia are of low value. Improving value
in health care is of growing importance to federal and state policy makers
in light of the demonstrably poor quality of care despite high Medicare,
Medicaid, and other health care expenditures.
Value improvement for clinicians often means having diagnostic and
treatment tools and strategies that increase confidence in the effectiveness
of their services. To communities and employers, improving value may
mean keeping workers who are family caregivers and their care recipients
healthier and more productive at lower cost, freeing up funds for infrastruc-
ture, education, and other important community activities. And for patients
and families, improving value often involves helping them avoid bankruptcy
and meeting their personal goals for care and for living as independently as
possible, even with a serious chronic condition (IOM, 2010b). The value of

a particular service or program is also important to these groups because

spending a great deal on one form of care may leave few resources for other
services or programs that might be more beneficial.
Although different actors in the health care system define value dif-
ferently, the fundamental calculus for value in health care is the health
outcome achieved per dollar spent to achieve it:
If all [health] system participants have to compete on value, value will
improve dramatically. As simple and obvious as this seems to be, however,
improving value has not been the central goal of the participants in the
system. The focus instead has been on minimizing short-term costs and
battling over who pays what. The result is that many of the strategies,
organizational structures, and practices of the various actors in the sys-
tem are badly misaligned with value for the patient. (Porter and Teisberg,
2006, p. 4)
Many health policy experts are comfortable speaking in terms of

benefit-cost ratios, cost-effectiveness, and comparative effectiveness, but
clinicians usually are not trained to think in these terms.34 Simply making
clinicians more aware of the cost implications of their clinical recommenda-
tions for individual patients may be unlikely to affect their decision making
without addition support from clinical guidelines that incorporate a value
perspective (Ubel et al., 2012).
In the context of value and the desire of policy makers, professionals,
and the public to close the gap between the health system’s potential per-
formance and its current shortcomings, “accurate, reliable, and valid mea-
surements are a prerequisite for achieving and assessing progress in areas
such as improving the quality of health care delivered to patients, reporting
on the status of the health care system, and developing payment policies
and financial incentives that reward improvement” (IOM, 2013c, p. 2).
In general, “quality measures provide objective descriptors of the conse-
quences of care and transform the nebulous concept of ‘good medicine’ into
a measurable discipline” (IOM, 2013d, p. 272). A number of important
quality measures relevant to end-of-life care already exist, as discussed in
Chapter 2. The National Quality Measures Clearinghouse contains almost
200 measures coded as related to end-of-life care. Despite the number and
scope of the existing measures relating to palliative and end-of-life care,
there remain important omissions and limitations to existing measures.
Most of the listed measures are either disease- or setting-specific; good
measures that apply to the highest-cost, highest-risk individuals—those
34 The quality-adjusted life-years (QALYs) metric commonly used to assess the benefits of
an intervention must be used with care in the end-of-life context (Yang and Mahon, 2011,
p. 1197).

with multiple chronic conditions and/or functional decline who receive care
across many settings—are lacking. Few of these quality measures, however,
have been integrated into CMS’s value-based purchasing programs, so they
as yet have no role in improving care. It would be valuable to assess other
ways, aside from value-based purchasing, of effecting improvements in care,
as well as the extent to which CMS’s value-based purchasing programs
improve care. Public reporting mechanisms for quality measures related to
end-of-life care would be useful as well.
Improving the quality of care for Americans nearing the end of life,
then, will require the development and implementation of new measures
that, for example,
• are more patient-oriented and include population groups with

multiple conditions receiving care across multiple settings;
• include demographic groups that are typically underserved;
• measure quality for a broader spectrum of patients, including peo-
ple enrolled in Medicare Advantage, Medicaid managed care, and
hospice and those residing in nursing homes;
• take into account a broader array of patient and family needs,
particularly those related to the social services discussed in this
chapter;
• measure the adequacy of support for informed choice by patients
and families;
• enable assessment of system performance with respect to advance
care planning, shared decision making, and provision of spiritual
support, all now defined variably across programs and research
efforts;
• track whether care provided accords with patients’ values, goals,
and informed preferences; and
• capture the full array of costs of care near the end of life, includ-
ing out-of-pocket expenditures and those associated with informal
caregiving.
Prioritization among existing and new quality measures and indicators

is likely to be an important future endeavor (Meltzer and Chung, 2014).
RESEARCH NEEDS
Learning health care organizations generate and use accurate, timely,
and up-to-date evidence that helps ensure that patients receive the care they
need when they need it (IOM, 2007). System learning can take place—and
is needed—at the level of the individual clinical practice, the health care in-
stitution, the payer, and various levels of government, from entities as small

as a neighborhood health center to those as large as CMS. The measures

described above are essential for conducting research that can provide ac-
tionable feedback to clinicians, payers, and managers and create a learning
health care organization.
In advocating more effective and meaningful efficiency measures and
incentives, Neuberg (2009, p. 132) says, “It is not sufficient to simply re-
ward savings and hope that quality and outcomes are maintained.” With
good measures of quality of care for people nearing the end of life, impor-
tant research questions such as the following can be answered:
• How can models of end-of-life care whose effectiveness has been

demonstrated be diffused and adopted more widely?
• Do the savings in hospital costs achieved by palliative care hold
true for total health care costs? Do they do so if social services are
added to the mix?
• How are changes in the organization and financing of the health
care system affecting the nature, quality, and costs of care for
patients near the end of life? Are there unintended negative conse-
quences, and especially, has the risk of undertreatment increased?
• What are the out-of-pocket expenses, costs, and economic impact
for caregivers for people near the end of life, and what social ser-
vices could help minimize and manage those costs?
• How can geographic variation in intensity of services be reduced to
promote access to the best care without under- or overtreatment?
• What are the experiences of patients with advanced serious ill-
nesses enrolled in Medicare Advantage and Medicaid managed care
programs, and how do they compare with those of patients having
fee-for-service coverage?
• What meaningful-use criteria relating to end-of-life care need to be
developed so that emerging electronic health records will collect
adequate data on this care?
• What are the most effective ways to tailor and target support ser-
vices to specific patients and families to meet both their evolving
needs and the requirement for program sustainability?
• How can patients, families, and the public best contribute to deci-
sions about the design of end-of-life services, and are their views
taken into account?
• Why is the risk for a malpractice action still feared by some clini-
cians when it is so low?
Moving forward in these areas will require efforts beyond what the
ACA has accomplished. In some unintended ways, the ACA may even
worsen care for people with serious advanced illnesses if it launches demon-

strations involving bundled payments for discrete episodes of care without

integrating long-term services and supports, or if it focuses on transitional
care programs that are hospital-centric rather than truly community based
(Naylor et al., 2012).
Health services research is needed to help organizations learn how
to effect better transitions between hospitals; post-acute care settings, es-
pecially nursing homes; and homes. For example, it would be useful to
determine the relative contribution of financial incentives, communication
gaps, and resource shortages to the care provided to nursing home residents
with dementia and to the causes of multiple hospitalizations for preventable
conditions.
Other areas worthy of serious investigation that would directly benefit
health care organizations, as suggested by the discussion in this chapter,
would document the contribution of social services to quality care, and
reimbursement approaches that support palliative care at home and in the
hospital with full continuity between them. Benefiting patients, families,
and providers would be research on approaches for attracting more mem-
bers of vulnerable minority populations to hospice and ways to improve
services for dual-eligible people.
Because of the profound realignment in the U.S. health care system
currently under way, meaningful research is needed that is both timely
and actionable. Such research can identify important modifications and
refinements to these evolving financial and organizational strategies before
they become firmly established and more difficult to change. The growing
availability of data from electronic health records should facilitate these
research efforts.
Finally, information about key end-of-life measures and the results of
research need to be made broadly available so that all interested parties can
learn from them; can maintain accountability; and can maximize efforts to
ensure that end-of-life care is compassionate, high-quality, and affordable
for all.
Findings
This study yielded the following findings on policies and payment sys-
tems to support high-quality end-of-life care.
Fundamental Redesign of Medicare and Medicaid

Incentives under fee-for-service Medicare result in more use of services
(for example, hospital days, intensive care, emergency care), more transi-

tions among care settings that are a burden on patients, and late enroll-
ment in hospice, all of which jeopardize the quality of end-of-life care and
add to its costs. In addition, payment silos contribute to fragmentation of
care, hinder coordination across providers, and encourage inappropriate
utilization (Aragon et al., 2012; Davis et al., 2012; Gozalo et al., 2011;
Grabowski and O’Malley, 2014; Segal, 2011; Teno et al., 2013).
Integration of Health Care and Social Services

Evaluations of programs that integrate health care and long-term social
services indicate that the additional supports may reduce hospitalizations
and health care costs while improving enrollees’ quality of life. What
makes such programs financially sustainable is an appropriate reimburse-
ment level, along with careful targeting of services to individuals at highest
risk of health care utilization (including hospitalization and nursing home
placements) and tailoring of the services to individual/family needs as they
evolve over time. Successful existing models need to be implemented more
widely (Brown and Mann, 2012; Brown et al., 2012; Senate Commission
on Long-Term Care, 2013; Unroe and Meier, 2013).
Expansion of Palliative Care

Palliative care interventions, including hospice, are effective in improv-
ing important patient outcomes, providing care more consonant with most
patients’ and families’ informed preferences, and potentially reducing the
costs for both public and private payers by avoiding unnecessary hospi-
talizations and use of intensive care. Changes throughout the health care
system are needed to increase incentives for providing comprehensive pal-
liative care (Brumley et al., 2007; Gade et al., 2008; Krakauer et al., 2009;
Meyer, 2011; Morrison et al., 2008, 2011; Penrod et al., 2010; Rabow et
al., 2013).
Increased Transparency and Accountability

Changes in the payment system under the ACA, as well as any future
changes specifically affecting Americans nearing the end of life, need to be
carefully monitored for their effects—intended and unintended—on this
highly vulnerable population. To this end, relevant quality standards and
actionable measures are needed (IOM, 2013b,c; Naylor et al., 2012).

Conclusions
At present, the U.S. health care system is ill designed to meet the needs
of patients near the end of life and their families. The system is geared
to providing acute care aimed at curing disease, but not at providing the
comfort care most people near the end of life prefer. The financial incen-
tives built into the programs that most often serve people with advanced
serious illnesses—Medicare and Medicaid—are not well coordinated, and
the result is fragmented care that increases risks to patients and creates
avoidable burdens on them and their families. From a system perspective,
fragmented, uncoordinated care and unwanted and unnecessary acute care
services—which in the current system constitute “default care”—are ex-
tremely costly. At the same time, many of the practical, day-to-day social
services that would allow people near the end of life to live in safety and
comfort at home, where most prefer to be—such as caregiver training and
support, meals and nutrition services, and family respite—are not easily
arranged or paid for. The palliative care model and other care models that
integrate health and social services, when properly implemented, may im-
prove quality of care and reduce the use of expensive services, and could
potentially help stabilize and even reduce increases in health care costs for
people near the end of life.
Many aspects of the U.S. health care system are changing, and these
and future changes may have both beneficial and unintended negative con-
sequences for Americans of all ages near the end of life. For that reason,
efforts to ensure the transparency and accountability of the programs that
serve this population will need to be scrupulously monitored. Much can be
learned from existing successful programs and care delivery models—such
as palliative care—that merit rapid expansion.
Recommendation 4. Federal, state, and private insurance and health

care delivery programs should integrate the financing of medical and
social services to support the provision of quality care consistent with
the values, goals, and informed preferences of people with advanced
serious illness nearing the end of life. To the extent that additional
legislation is necessary to implement this recommendation, the admin-
istration should seek and Congress should enact such legislation. In
addition, the federal government should require public reporting on
quality measures, outcomes, and costs regarding care near the end of
life (e.g., in the last year of life) for programs it funds or administers
(e.g., Medicare, Medicaid, the U.S. Department of Veterans Affairs).
The federal government should encourage all other payment and health
care delivery systems to do the same.

Specifically, actions should
• provide financial incentives for

− medical and social support services that decrease the need for
emergency room and acute care services,
− coordination of care across settings and providers (from hospital
to ambulatory settings as well as home and community), and
− improved shared decision making and advance care planning
that reduces the utilization of unnecessary medical services and
those not consistent with a patient’s goals for care;
• require the use of interoperable electronic health records that in-
corporate advance care planning to improve communication of
individuals’ wishes across time, settings, and providers, document-
ing (1) the designation of a surrogate/decision maker, (2) patient
values and beliefs and goals for care, (3) the presence of an advance
directive, and (4) the presence of medical orders for life-sustaining
treatment for appropriate populations; and
• encourage states to develop and implement a Physician Orders for
Life-Sustaining Treatment (POLST) paradigm program in accor-
dance with nationally standardized core requirements.
Medical and social services provided should accord with a person’s val-
ues, goals, informed preferences, condition, circumstances, and needs,
with the expectation that individual service needs and intensity will
change over time. High-quality, comprehensive, person-centered, and
family-oriented care will help reduce preventable crises that lead to
repeated use of 911 calls, emergency department visits, and hospital
admissions, and if implemented appropriately, should contribute to sta-
bilizing aggregate societal expenditures for medical and related social
services and potentially lowering them over time.
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Public Education and Engagement
The Institute of Medicine (IOM) report Approaching Death (IOM,

1997) suggests that “a continuing public discussion is essential to develop a
better understanding of the modern experience of dying, the options avail-
able to dying patients and families, and the obligations of communities to
those approaching death” (IOM, 1997, p. 270). The rationale for this con-
clusion is that creation of a more supportive environment for people near
the end of life and their caregivers and families—one that would ensure that
people die free of avoidable distress and “find the peace or meaning that is
significant to them”—requires attitudes and actions that can be motivated,
strengthened, and sustained through continued public discussion. The com-
mittee responsible for that report believed that public officials, professional
organizations, religious leaders, and community groups should bear the
greatest responsibility for encouraging this discussion and for providing the
specific information needed by patients and families faced with advancing
illness. The “whole-community model for care at the end of life” presented
in the report elaborates on this idea, describing potential public education
programs “that aim to improve general awareness, to encourage advance
care planning, and to provide specific information at the time of need about
resources for physical, emotional, spiritual, and practical caring at the end
of life” (IOM, 1997, p. 117).
Likewise, the IOM report When Children Die (IOM, 2003) includes
several recommendations concerning better communication about end-
of-life issues in ways that encompass but are somewhat broader than
the activities of advance care planning. The report calls for information
programs and resources to help families advocate for appropriate care for
345

their children and themselves, and cites as a priority research on methods

for improving communication and decision making.
In the years since these reports were issued, the need for culturally ap-
propriate public education and engagement about end-of-life care contin-
ues, and it is manifest at several levels. The committee responsible for the
present report perceives several fundamental needs:
• at the societal level, to build support for constructive public policy

related to the organization and financing of end-of-life care and
for institutional and provider practices that promote high-quality,
compassionate, sustainable care;
• at the community/family level, to raise public awareness and el-
evate expectations about care options in the final phase of life, the
needs of caregivers, and the hallmarks of high-quality culturally
relevant and appropriate care; and
• at the individual level, to motivate and facilitate advance care plan-
ning and meaningful conversations with family, other caregivers,
and clinicians about values, goals, and preferences for care.
The nation has a long way to go to meet these needs. Not only do
most Americans lack knowledge about end-of-life care choices, which they
will at some point so urgently need, but also the health community and
other leaders have not fully and productively utilized public education and
engagement strategies to make that knowledge available in ways that are
meaningful and relevant to diverse population groups. Worse, statements
of some leaders have misled the public on these issues (see the discussion
of “death panels” later in this chapter).
The proportion of the U.S. population that is aged 65 and older has
more than tripled over the past century, from 4 percent in 1900 to 14
percent in 2012 (Hobbs and Stoops, 2002; U.S. Census Bureau, 2013). Yet
despite this aging of America, many have not thought about the kinds of
health care decisions they will face as they age or develop serious chronic
conditions. As time and technology progress, those decisions will become
increasingly complicated.
In this chapter, the terms “public education” and “public engagement”
have slightly different meanings. “Public education” generally refers to
one-way communication with audiences through media, print, and online
channels, while “public engagement” refers to efforts to involve audience
members and may include two-way communication and interactivity. The
former is passive; the latter is active and may merge into advocacy.
This chapter begins by providing an overview of the current state of
public awareness about end-of-life care. Next is a description of events and
activities that have led to a changing climate for discussion of death and

PUBLIC EDUCATION AND ENGAGEMENT 347
dying and encouraged advance care planning. The chapter then explores
considerations relevant to developing public education and engagement
campaigns on end-of-life topics. This is followed by discussion of several
controversial issues that have dominated recent public dialogue on death
and dying. The chapter ends with the committee’s recommendation on
public education and engagement.
THE STATE OF PUBLIC KNOWLEDGE ABOUT END-OF-LIFE CARE

In describing a “learning health system,” the IOM suggests that “the
success of and innovations in healthcare delivery should depend on direct
consumer engagement in the design of healthcare models and their aims”
and that “citizen and patient engagement is central to taking advantage
of advances in the personalization of care based on genetics, preferences,
and circumstances” (IOM, 2011, p. 33). But what is known on consumer
thinking on the delivery of care near the end of life and the readiness to
engage around this topic? Recent polls provide an overall impression, and
the views of individuals who addressed the committee in its three public
sessions and the 578 people who submitted comments to the study’s website
provide some deeper perspectives (see Appendix C), although the full range
of sociocultural perspectives may not be completely represented in public
polls or public comments to the committee.
Trends in Fundamental Attitudes

In the 2011 Living Well at the End of Life poll of a national sample
of U.S. adults, 86 percent of respondents said they thought end-of-life care
should be “a top priority for the health care system in this country” (Re-
gence Foundation and National Journal, 2011a, p. 2). More than 90 per-
cent said hospice care should be a top priority, and once the term “palliative
care” was explained, 96 percent said it should be a top priority as well.
A Pew Research Center (2013) survey of a nationally representative
sample of nearly 2,000 adults provides recent information about Ameri-
cans’ attitudes regarding a number of aspects of end-of-life care, updating
information from similar surveys conducted in 1990 and 2005. Since 1990,
the proportion of adults who believe that “medical staff should do every-
thing possible to save the life of a patient in all circumstances” has doubled.
In part, this increase is due to a much smaller percentage who replied “don’t
know” to the same question in 2013. However, the percentage who believe
“there are at least some circumstances where a patient should be allowed
to die” also fell over the period, from 73 to 66 percent.
Nevertheless, many Americans say they would tell their own doctors to
stop treatment so they could die:

• if they had an incurable disease and were suffering a great deal of

pain (57 percent),
• if they had an incurable disease and were totally dependent on
another for care (52 percent), or
• if they had an incurable disease and it were difficult to function in
day-to-day life (46 percent).
These percentages have remained about the same since 1990, although at
the same time, a growing number of people—35 percent, compared with 28
percent in 1990—say they would tell their doctor to do everything possible
to keep them alive even if they were suffering a great deal of pain and there
were no possibility of recovery. Again, much of this shift is due to people
previously unsure.
On the other hand, 62 percent of those surveyed believe individuals
have a moral right to end their own lives if they are suffering great pain
with no hope of improvement—a 7 percent increase from 1990. Substantial
numbers also believe people have the right to commit suicide if they have
an incurable disease (56 percent), when they are ready to die and living has
become a burden (38 percent), or when their care is an extremely heavy
burden on the family (32 percent). In this survey, the public was equally di-
vided on the question of whether physicians should be allowed to prescribe
a lethal drug to assist a person seeking suicide.
Although the majority of black Protestants (61 percent) and Hispanic
Catholics (57 percent) would ask their doctors to “do everything possible”
to keep them alive even if they were suffering great pain and had no hope
of improvement, large numbers of both groups (39 percent and 43 percent,
respectively) feel differently or have not decided. This finding underscores
the point made in Chapter 3 that clinicians cannot make assumptions
about patients’ beliefs and preferences based on race, ethnicity, religion, or
culture. They must ask.
Understanding of Care Choices
Basic Terminology
Expecting people to understand what they are reading and hearing
about end-of-life care or to have meaningful conversations about the sub-
ject presumes a common vocabulary. This report emphasizes the importance
of high-quality palliative care, but 78 percent of Americans responding to a
2011 survey did not know what palliative care is (CAPC, 2011), and in a
more recent survey, 83 percent said they had not heard of it (CHCF, 2012).
Even medical professionals conflate “palliative care” with “end-of-life
care,” when in fact palliative care can be appropriate at any stage of a

serious illness when active steps are needed to reduce pain and symptoms
and improve quality of life (CAPC, 2011). Nor do clinicians always cor-
rectly distinguish between “palliative care” and “hospice,” the latter being
a model for delivering palliative services.
In this report, the committee also repeatedly refers to the importance
of family caregivers. When people were asked what term they would use
to describe “loved ones who care for [people] at the end of their lives,”
however, nearly half of respondents did not have a term for that role, one-
quarter said “family,” and one-quarter responded “caregiver” or “care-
taker” (Calabrese-Eck, 2013).
In Chapter 3, the committee strongly endorses the need for people to
name a health care agent. Because this role has numerous titles in state
law and in practice—including, for example, “agent,” “surrogate,” and
“health care power of attorney”—confusion is inevitable. When people
were asked what term they would use to refer to the “person they designate
to make healthcare decisions on their behalf,” 30 percent of respondents
did not know what to call such a person, 32 percent said “family,” 15
percent “power of attorney,” 11 percent “beneficiary/executor” (perhaps
recognizing this person has legal authority), and 10 percent “caregiver”
(Calabrese-Eck, 2013).
Terminology matters when it comes to controversial end-of-life issues
as well. While a Gallup survey conducted in May 2013 found that only 51
percent of respondents supported doctors’ helping a terminally ill patient
“commit suicide” if requested by the patient, 70 percent supported such
a policy—a percentage similar to that found in 1990—when the practice
was described as allowing doctors to “end a (terminally ill) patient’s life
by some painless means” if requested. Recognizing that the term “assisted
suicide” is problematic, advocates for this policy often term it “physician
aid in dying”; in Oregon, which was the first state to allow the practice
through a 1994 ballot initiative,1 and elsewhere, it is sometimes called
“death with dignity” (Levine, 2014). Gallup’s question using the “painless
means” wording also specified that both patient and family requested it,
whereas the “assisted suicide” question specified only the patient’s request-
ing it (Saad, 2013).
In short, the foundation for effective communication is not laid, and
“the terminology that the health care system uses and the way information
is presented is often not aligned with what consumers use and seek” (C-
TAC, 2014, p. 2).
1 Oregon Death with Dignity Act, OR. REV. STAT. §§ 127.800-127.995 (2006).

Concerns About Care

Americans have two consistent concerns about care near the end of life
that are reflected in a number of recent polls—the cost of care and being a
burden on their families:
• Asked what would concern them if they or a family member be-

came seriously ill, Americans ranked the potential cost of treatment
as their highest concern (overall ranking 8.1 on a 10-point scale)
(Regence Foundation and National Journal, 2011a).
• In a 2011 poll, Californians were asked about important concerns
at the end of life, and the top concern was making sure the family
was not burdened financially by care (67 percent) (CHCF, 2012).
• In the same survey, 60 percent of respondents (68 percent of African
American respondents) said it was extremely important to them to
make sure their family is not burdened by difficult decisions about
their care.
The public’s concerns about costs and impacts on the family are well
founded, as discussed in other chapters of this report.
Expression of Individual Preferences

The 2013 Pew survey referenced above found that 37 percent of Ameri-
cans say they have given a great deal of thought and 35 percent say they
have given some thought to their preferences regarding medical treatment
near the end of life; among those aged 75 and older, one-quarter have given
the issue little or no thought. Among people who say they have given the
issue considerable thought, most (88 percent) have captured their prefer-
ences either in writing or in conversation with others. Americans who are
older, white, and have more education or higher incomes are more likely
to have put their wishes in writing. (Chapter 3 reviews this literature in
more detail.)
Nevertheless, among Americans aged 65 and older, more report talking
with their children about what to do with family belongings (76 percent)
than about how to handle their medical care if they can no longer make
their own decisions (63 percent) or can no longer live independently (55
percent). Even fewer adult children of older parents say the discussion
about medical care decision making has occurred (57 percent) (Pew Re-
search Center, 2009).
If people find the topic of care preferences difficult to discuss with fam-
ily members, discussion with their health care providers appears to be no
easier. Research conducted in the U.S. population in general (not specifically

among those with serious advanced illnesses) has found that most (8 in 10)
want their clinician to listen to them and to have the full truth about their
diagnosis; yet only 6 in 10 say that their provider listens to them, and fewer
than half say their provider asks about their goals and concerns for their
health and health care (Alston et al., 2012). And although the cost of health
care is of concern to patients with serious illnesses, few physicians (16 per-
cent) report having any education or training regarding financial issues and
how to discuss them (Regence Foundation and National Journal, 2011b).
According to Alston and colleagues (2012, p. 7), “Unsurprisingly,
30 percent of people said they ‘very often’ get health information from a
source other than their health care provider. The most common sources
were their spouse or partner (15 percent), the Internet (9 percent), and a
friend or family member who works in health care (6 percent).” Likewise,
with respect to palliative and end-of-life care in particular, people said
they received most of their information from family members and friends
(49 percent) (Regence Foundation and National Journal, 2011a). In this
study, only about one-third of respondents said they received such infor-
mation most often from their doctor or health care provider or the news
media, and 45 percent said they received very little or no such information
from their physician. When asked how much they trusted the information
they received, respondents gave high ratings to information that came
from doctors or other health care providers (76 percent) and from family
and friends (69 percent). The information that came from the news media
received high trust ratings from only 17 percent of respondents.
Surveys indicate that most people (70-80 percent) want a patient expe-
rience that includes deep engagement in shared decision making; however,
a substantial gap exists between what people want and what they receive.
Those who do become more engaged report a better experience (Alston et
al., 2012). Written public testimony gathered for this study through an on-
line questionnaire (see Appendix C) indicates the often poor communication
patients and families have with clinicians. People feel that explanations are
rushed, issues are not explained, choices are not understood, and clinicians
do not listen. Good communication, by contrast, is greatly appreciated.
The way to establish good communication, one caregiver said, is to “ask
patients and families what they want,” which is a message of Chapter 3.
Experts in health care communication believe a combination of three
elements—clinician expertise, patient and family goals and concerns, and
medical evidence2—is necessary for truly informed health care decisions,
and in general, Americans strongly value all three (Alston et al., 2012).
What is needed is to mobilize that general support in the specific context
2 Shortcomings in the U.S. population with respect to literacy and health literacy, which are
essential to the interpretation of medical evidence, are discussed in Chapter 3.

of advanced illness. Death and dying can be a difficult, emotional issue for
both public engagement and private discussion. For most people, until a
family member is actually facing a serious illness, interest is just too low, the
psychological barriers are too high, and preoccupation with the demands
of daily life is a ready excuse not to engage. At least in the short term, that
reluctance must be acknowledged and societal means found to help people
understand that, in most instances, good information is available when
they want it.
Public education and engagement efforts should aim to normalize dif-
ficult conversations and help people from diverse communities acquire the
information and skills needed to participate meaningfully in those conversa-
tions. As a result, more people might obtain the care they want and need
as they near the end of life.
THE CHANGING CLIMATE FOR DISCUSSION

OF DEATH AND DYING
Events and activities since 1997 have changed the climate for discus-
sions of death and dying, and the topic is not the taboo it was a few decades
ago. As more people in the baby boom generation reach age 65—some
10,000 a day until 2030 (Pew Research Center, 2010)—public interest in
and acceptance of information on death and dying will likely increase. As
previously noted, the Pew Research Center (2013) found that the propor-
tion of surveyed Americans indicating that they have given a great deal of
thought to their end-of-life wishes was 37 percent in 2013, up from 28
percent in 1990. This rising interest presents opportunities for reaching
people more effectively with tailored information directed at those who ac-
cess different media (or no media at all), those who rely on languages other
than English, and those for whom lay educators (for example, promotoras)
may be the most effective and culturally appropriate educational approach,
as well as other means to reach those currently underserved.
A number of significant national efforts have encouraged more effective
advance care planning and “having the conversation” and sought to im-
prove end-of-life care more generally. National organizations, including the
National Hospice and Palliative Care Organization, the Center to Advance
Palliative Care, several insurers, private foundations, and others, have at-
tempted to raise public awareness about what constitutes good end-of-life
care and how people can go about obtaining it.
In recent years, end-of-life experiences have been the subject of numer-
ous family memoirs. Mitch Albom’s 1997 book Tuesdays with Morrie has
sold more than 14 million copies. Websites have been created to facili-
tate care planning conversations (for example, The Conversation Project,
DeathWise, Aging with Dignity and Five Wishes, and Engage with Grace),

organize discussions on end-of-life topics (for example, Death Cafe, Death

over Dinner),3 and support community-level advocacy (for example, Project
Compassion). Some focus on medical decisions, some discuss relationships,
and some also cover financial issues. Major movies, television series such as
Showtime’s 2013 Time of Death, and individual episodes of dramatic pro-
grams have shown greater realism with respect to death and dying. Local
and national documentaries (notably Bill Moyers’ PBS series On Our Own
Terms) have covered the topic extensively, providing tools for individual
action and community engagement and serving as the impetus for activities
in hundreds of communities nationwide (RWJF, 2004a). Box 6-1 lists these
and other examples of recent efforts to bring attention to end-of-life issues.
The written public testimony gathered for this study supports public
education initiatives that would help normalize discussions of death and
dying (see Appendix C). Comments encourage both television advertising
campaigns and improvements in the relevant content of entertainment
programming (such as more realistic portrayals of the likely outcome of
resuscitation). Projects such as Hollywood Health and Society at the Uni-
versity of Southern California’s Annenberg School for Communication and
Journalism advise on a range of health topics. The Writers Project of the
Robert Wood Johnson Foundation’s Last Acts initiative worked with televi-
sion writers and producers specifically on death and dying issues, with the
goal of increasing the realism of depictions of end-of-life decision making
and promoting understanding of palliative care (Hollywood Health and
Society, 2014; RWJF, 2004b).
The idea that American society can have a national conversation about
death and dying is supported by the confluence of several social forces
(Novelli, 2013):
• Many Americans have seen how the current health care system has
treated their parents and other family members and do not want
that for themselves. This activated consumer generation is likely to
be less passive about accepting care that violates their own wishes.
• Many people have stories about a death gone wrong, and increas-
ingly, people are sharing those stories. This shared yet intensely pri-
vate experience is common to people of all racial, ethnic, religious,
social, political, educational, and occupational groups.
3
“Discussing end-of-life issues over dinner” coverage at http://www.aarp.org/money/
investing/info-10-2013/death-dinner-parties-discuss-end-of-life.html?sf19245178=1 (accessed
December 17, 2014).

BOX 6-1
Examples of Recent Efforts to Bring Attention
to End-of-Life Dilemmas and Approaches
General Awareness Movements and Advance Care Planning

The Conversation Project: http://theconversationproject.org
DeathWise: https://www.deathwise.org
Engage with Grace: http://www.engagewithgrace.org
Death Cafe: http://www.deathcafe.com
Death over Dinner: http://www.deathoverdinner.org;
http://blog.tedmed.com/?tag=death-over-dinner
Project Compassion: http://project-compassion.org
Aging with Dignity and Five Wishes: http://agingwithdignity.org;
http://www.agingwithdignity.org/five-wishes.php
Community Conversations on Compassionate Care (Compassion and
Support): https://www.compassionandsupport.org
National Healthcare Decisions Day: http://www.nhdd.org
Life Before Death: The Lien Foundation: http://www.lifebeforedeath.com/
index.shtml
Before I Die: http://beforeidie.cc
Death Clock: http://www.deathclock.com
Films and Television Series

Time of Death: http://www.sho.com/sho/time-of-death/home
On Our Own Terms: http://www.pbs.org/wnet/onourownterms
Honoring Choices Minnesota: http://www.honoringchoices.org
A Good Day to Die: http://thediemovie.wordpress.com
Ways to Live Forever: http://trailers.apple.com/trailers/independent/
waystoliveforever
How to Die in Oregon: http://www.howtodieinoregon.com/trailer.html
Amour (Academy Award Winner, Best Foreign Language Film):
http://www.sonyclassics.com/amour
• Leadership in public education is emerging at the local level in com-

munities around the country and nationally through coalitions and
collaborations.4
Features of several continuing public education efforts focused on the

issue of advance care planning are provided in Table 6-1.
4
Coalitions and organizations currently participating in public education efforts include
National Healthcare Decisions Day and the National Alliance for Caregiving, plus numerous
independent organizations, such as the Caregiver Action Network, Compassionate Friends,
and the Informed Medical Decisions Foundation.

CONSIDERATIONS FOR PUBLIC EDUCATION

AND ENGAGEMENT CAMPAIGNS
Several recommendations presented in this report might be considered
for inclusion in public education and engagement initiatives. Such efforts
are likely to be more successful if the end-of-life care topic pursued is highly
relevant to an organization’s mission and reflects the interests of the audi-
ences that organization serves. For example, libraries might create reading
lists or host book discussion groups on end-of-life topics, employers might
review financial and end-of-life planning with employees nearing retire-
ment, and senior centers might be concerned with raising awareness of
caregiver issues. Coalitions of organizations might manage a broader set of
topics and recruit members well positioned to address them.
The following subsections provide a brief review of major consider-
ations entailed in developing a public education and engagement campaign.
These considerations—sponsorship, audiences, messages, channels, and
evaluation—are adaptable to a variety of organizations and themes. They
can be understood in terms of either communications or social marketing5
(audience versus target market, for example).
Sponsorship
Especially with topics as sensitive as advance care planning and end-
of-life care, the choice of a credible and trustworthy entity to sponsor a
public education and engagement effort is critical. In many communi-
ties, coalitions of organizations have come together to sponsor a project,
bringing in more people and providing assurance that the effort is broad
based.
As reviewed in Chapter 1, a great many stakeholder groups have a
professional or civic interest in end-of-life issues. They include health and
social services professionals, clergy, volunteers, and others who provide
direct care and counseling; those who manage health care institutions and
programs, run public and private insurance programs, and advocate for
better care; state and federal policy makers; and business executives and
union leaders. Health care systems and voluntary health organizations may
be able to deliver credible messages, but sponsorship and participation
in coalitions are often broader than that. Other organizations—such as
labor unions, religious organizations, public health agencies, and insurers—
interested in the health and welfare of their members or the community also
may become interested. A sponsor or coalition partner can be as large as a
5 Social marketing is the application of marketing principles to issues and causes involving
personal behavior (antismoking campaigns, for example) or community betterment (promot-

ing HIV/AIDS awareness, for example) (Grier and Bryant, 2005; Walsh et al., 1993).

356
TABLE 6-1 Features of Selected Organizations’ Public Awareness and Engagement Activities Related to Advance
Care Planning
Community
Honoring Aging with Conversations on National Healthcare
Choices Dignity and The Conversation Compassionate Decisions Day Initiative
Feature Minnesotaa Five Wishesb Projectc Care (CCCC)d (NHDD)e
Purpose Encourage Improve how people Ensure that end- Motivate advance Inspire, educate and
discussions of end-of- talk about and plan of-life care wishes care planning empower the public
life care preferences for end-of-life care are expressed and discussions and and providers about the
respected completion of importance of advance care
advance directives planning
Target Anyone over age 18 All adults, especially Anyone over age 18 General public and health
audience those who would be care providers
“champions” of the
message
Time frame 2008-present 1997-present 2012-present 2002-present 2008-present
Outreach Volunteers; media; Mass media, word of National media Volunteer coalition; Public events, website,
methods partnerships with mouth, professional campaign, website, employer outreach; email, social media
the faith community, associations, social media, dissemination of
multicultural groups, champions, traditional media, educational tools
health and human translation of the entertainment through workshops,

services providers Five Wishes advance industry, employers, print, video, Internet,
directive into 27 faith community and broadcast and
languages social media

Selected Six documentaries More than 20 More than 50,000 One million printed Participation by more
progress broadcast 28 times to million Five downloads advance care than 110 national
measures 163,833 households; Wishes documents of materials, planning booklets, organizations, 1,200 state
nearly 50,000 page distributed; 30,000 which include a active website; 40-60 and local organizations,
views of Honoring organizations help Conversation Starter percent of target and 1.7 million members
Choices website; distribute Kit and a guide on populations have of the general public;
project conducts how to talk to one’s health care proxies 37 states with dedicated
awareness surveys, doctor state liaisons; more than
tracks completion of 29,000 advance directives
advance directives completed on NHDDs
(April 16) between 2008
and 2013
Budget First 3 years: First 5 years:
$1.8 million $1 million;
(including subsequently
documentary self-sustaining
production);
core: $350,000/year
SOURCES:
aPersonal communication, S. Schettle, Twin Cities Medical Society and Honoring Choices Minnesota, December 5, 2013.
bPersonal communication, P. Malley, Aging With Dignity, December 6, 2013.
cPersonal communication, H. Warshaw, The Conversation Project, December 7, 2013.
dCCCC, 2008, 2014; Personal communication, P. Bomba, Community Conversations on Compassionate Care, February 2, 2014.
ePersonal communication, N. A. Kottkamp, National Healthcare Decisions Day, December 3, 2013.

357
national mental health organization or as small as one of its local chapters,

a national religious body or an individual congregation.
Excellus BlueCross BlueShield, serving Upstate New York, has sup-
ported a Community-Wide End-of-Life/Palliative Care Initiative since
2001 that engages a broad array of professionals, consumers, and other
collaborators from diverse backgrounds. This collaboration has achieved
heightened awareness of the value of advance care planning and greatly
increased the percentage of people who have completed health care proxies
(through its Community Conversations on Compassionate Care Program);
has implemented Medical Orders for Life-Sustaining Treatment (MOLST)
(New York’s Physician Orders for Life-Sustaining Treatment [POLST] para-
digm initiative) and eMOLST programs, described in Chapter 3; has led re-
gional and statewide discussions and encouraged improved policies related
to high-quality palliative and end-of-life care, including pain management
and use of feeding tubes; has engaged in additional community-wide educa-
tion efforts; and has conducted a number of surveys to establish baseline
data and determine progress toward measurable goals (CCCC, 2014).
Audiences
Different end-of-life messages are relevant to different audiences, and
there are various ways to segment audiences for the purpose of crafting
messages with maximum appeal. The general rule of thumb in audience
segmentation is to have relevant sameness within groups and relevant dif-
ferences between groups (Andreason, 1995; Noar, 2006). Policy makers
and health care leaders might respond to one message, whereas members of
racial and ethnic minority groups might be interested in another; likewise,
older and younger adults would likely respond to different messages.
Clinician audiences are a vital complement to public audiences. Oppor-
tunities for engagement exist within the clinical community. For example,
clinicians who believe health professions schools should do a better job of
teaching about palliative care might work through a professional group—
and possibly even attempt to engage segments of the public—to advocate
for increased palliative care training. Likewise, senior centers, employer
groups, and other entities might want to tie messages for caregivers to pro-
grams aimed at healthy living, retiree benefits, and so on.
Audiences defined as the “general public” or “all Americans 65 and
older” are usually too diffuse to be maximally useful in campaign plan-
ning. The more carefully a market can be segmented into different groups,
with different messages and appropriate media for each, the more likely
the members of those groups are to respond as desired (Andreasen, 1995;

Grier and Bryant, 2005; Walsh et al., 1993). Given the usual limited fund-
ing for educational and engagement efforts, audience segments can be
prioritized by importance or likelihood of response. Thus, “segmentation
can help managers achieve both efficiency and effectiveness” (Andreasen,
1995, p. 177).
Audiences can be segmented by socioeconomic strata, by role (e.g.,
caregivers, clergy), by their involvement with the issue, and in many other
ways. For example, research has shown that people who have had a recent
hospitalization or who have been a caregiver for someone who recently
died are particularly receptive to engaging in advance care planning (Carr
and Khodyakov, 2007). They would be a natural audience for messages on
that topic.
Timing may be important in identifying a target audience. The point
at which a serious illness is diagnosed may be the most critical period of
attention and focus for individuals who are ill and their families, and the
time when they are most in need of useful information. People in this audi-
ence may be seeking relatively in-depth information about what to expect as
their illness progresses and how to respond to increasing care requirements.
An additional consideration is whether and how to target by behavior.
People who actively seek out health information—for example, on the
Internet—might constitute a discrete audience segment. Or people may
reach a stage of behavior change that prompts them to seek information
(the “stages of change” decision-making model is described in Chapter 3).
Even within audience groups, there may be significant subaudiences. Online
information seekers may be inclined to view their doctors as collaborators
to whom they can bring relevant health care information for review and
follow-up, or they may make use of the information independently. Making
good use of online information sources requires that people “have skills to
effectively seek out the desired information, evaluate it, and then apply the
information they find toward solving their health problems” (IOM, 2009,
p. 10). Almost 60 percent of the very large number of Internet users who
seek out online health information say they have used it in making health
decisions, and almost 40 percent say they have used it to change the way
they manage a chronic condition or pain (Fox, 2006). Nevertheless, infor-
mation provided in Chapter 3 about the low level of health literacy raises
some question as to whether people can use the information they find in a
way most useful to them. By contrast, people who have difficulty finding
answers to their health questions or understanding complex issues may pre-
fer to rely on their physicians to provide them with information. Although
both groups are active information seekers, they differ in where they look

for information, the way they relate to physicians, and their demographic
characteristics.6
Messages
Not until the target audiences have been chosen and some research on
their current views on relevant themes has been conducted can the work of
crafting specific messages begin. A number of past public engagement cam-
paigns around end-of-life issues have focused on the concept of consumer/
patient “control of your destiny” and the ability to “make your own deci-
sions on your own terms” (for example, the public engagement campaign
that accompanied Bill Moyers’ public television series On Our Own Terms
in 2000). Research on the efficacy and outcomes of this messaging has
been insufficient to allow assessment of audience response to this specific
approach. Message development often proceeds in stages, beginning with
in-depth personal interviews or focus groups, to gain a deeper understand-
ing of the views held on a subject by members of a target audience. Those
insights can be part of the basis for survey questionnaires administered to
larger groups to learn what aspects of an issue are most meaningful. Survey
responses can be either programmed (forced choice) or open-ended. Open-
ended comments are another rich source of opinion data.
Several recent end-of-life campaigns—aided by the ability to make
resources available via the Web—are providing much more in the way
of supporting materials to back up their basic messages (see Box 6-1 and
Table 6-1). An example is The Conversation Project, discussed in Chapter
3, whose basic theme is that people need to talk about the important but
difficult topic of end-of-life care. Its message is the provocative “Have you
had the conversation?” It supports that message by providing a Conversa-
tion Starter Kit and personal stories that can help normalize the discussion
of the topic (Bisognano and Goodman, 2013). Lately, The Conversation
Project has extended its message to emphasize the importance of conversa-
tions with clinicians as well.
Channels
Healthy People 2020, the federal government’s initiative to promote
disease prevention and health promotion goals for the nation, acknowl-
6 From Porter Novelli’s 2013 ConsumerStyles survey. 2013 ConsumerStyles is an online sur-
vey (administered through GfK’s KnowledgePanel®) among a representative sample of 6,717

U.S. adults, fielded March 29 to April 16, 2013. ConsumerStyles is Porter Novelli’s tri-annual
survey that tracks Americans’ attitudes, lifestyle values, purchasing behaviors, technology use,
and traditional and social media habits.

edges the important role of communications media in forming public views

on health and disease. According to the U.S. Department of Health and
Human Services (HHS, 2013), “Health communication and health infor-
mation technology (IT) are central to health care, public health, and the
way our society views health.” Information on health and medical care
is widely available through traditional print and broadcast outlets, as
well as through the Internet and social media, with more than 70 percent
of Americans using the Internet to acquire health information (Fox and
Duggan, 2013). Typical mass media campaigns are only one way to reach
and influence key target audiences on end-of-life topics. Communicating
through intermediaries, such as faith communities, health care providers,
and consumer affinity groups, is another approach. The Robert Wood
Johnson Foundation’s 10-year Last Acts campaign was built on a model
of involving trusted organizations as “message carriers,” and by its close,
organizations of all sizes were participating and sharing information with
their constituents (Patrizi et al., 2011). Social media can be useful chan-
nels as well, especially when they engage people who feel connected to the
message source. Offering high-quality websites at moments of readiness is
another potentially useful strategy.
Entertainment television has not been overlooked as a vehicle for carry-
ing health-related messages (Singhal and Rogers, 2004), including messages
about death and dying. Both long story arcs—such as the illness and death
of Dr. Mark Greene at the end of E.R.’s eighth season—and specific epi-
sodes of a program (e.g., N.Y.P.D. Blue, Gideon’s Crossing) have portrayed
dilemmas and decisions that arise at the end of life. Some audience members
who would never watch a documentary or attend a lecture on the topic are
thereby exposed to valuable information (and sometimes misinformation).
Social modeling theories suggest that audiences learn from fictional charac-
ters with whom they identify, making them more likely to emulate behavior
that has positive outcomes and avoid behavior that has negative outcomes
(Singhal and Rogers, 2004).
Evaluation
Evaluation is essential for campaigns to assess progress, make course
corrections, and achieve meaningful results. Finding campaigns that have
been well evaluated is difficult, however, and many of those that have been
evaluated tackle topics that are so different from end-of-life care that com-
parisons may be elusive. The 2013 Pew Research Center survey cited earlier
provides baseline data on consumer awareness, attitudes, and behavior
regarding a number of issues related to advanced illness and end of life.
Such national baseline information is a good starting point and with some
refinement could be used to gauge the effectiveness of public awareness and

engagement initiatives at the state or local level. Organizations that spon-

sor end-of-life public education and engagement initiatives might be able
to adopt at least some of these tracking survey questions for their projects
for both program improvement and accountability purposes, as well as the
ability to compare their project’s results with national trends. See Annex
6-1 at the end of this chapter for brief descriptions of selected health-related
public information and engagement campaigns and their results.
CONTROVERSIAL ISSUES
Widely publicized controversies related to end-of-life care and dying are
nothing new. These topics are perennial flashpoints for conflicts of values,
particularly in a heterogeneous nation such as the United States. People’s
views on serious illness and the end of life, bereavement and loss, and the
duties of caregivers are deeply held and vary across many societal dimen-
sions (see Chapter 3), as well as individuals of similar backgrounds. These
are vital public issues as well, and while people may differ in their opinions
about them, dissemination of relevant facts and evidence will enable those
opinions to be based, insofar as possible, on the facts as they are known
and a candid assessment of their limits.
This section examines several contentious issues related to end of life
that are certain to recur. Because their recurrence can be foreseen, stake-
holders should be prepared and should work with like-minded individuals
and groups to coordinate their messages and campaign aggressively and
effectively to promote an evidence-based and factual approach to these top-
ics. Moreover, concern about spurious attacks should not deter advocates of
person-centered, family-oriented care from responsible public engagement,
from making policy recommendations, or from advocacy.
Physician-Assisted Suicide
Supporters refer to the ethical principle of autonomy in advocating
state laws and policies to allow physician-assisted suicide. However, many
clinicians and others believe the practice violates a different fundamental
principle: “Do no harm.”
Opposition to public policy support for physician-assisted suicide goes
beyond religious objections. Allowing people “a choice” of whether to end
their lives may be fraught with opportunities for coercion and disruption of
patients’ trust absent vigorous attempts to ensure that all Americans have
access to high-quality care that would meet complex needs near the end of
life, as well as systemic changes that would lessen burdens (financial and
otherwise) on family members. As the American Geriatrics Society (AGS)
stated in its 1996 Supreme Court amicus brief in the case of Vacco v. Quill,

“The health care available to the terminally ill may be the most impor-
tant factor influencing the care provided and may result in requests for
[physician-assisted suicide] that could be avoided if appropriate care were
available. . . . The AGS has been opposed to legalizing [physician-assisted
suicide] or physician involvement in euthanasia, primarily on the grounds
that our frail elderly patients are especially vulnerable to social coercion
and that the well-being of those who are old and sick is not being carefully
considered” (Lynn et al., 1997, pp. 497-499).
In 1997, the U.S. Supreme Court ruled that assisted suicide is not a
constitutionally protected right, although it did not bar states from formu-
lating their own statutes to address it, and five now allow it under state law
or court authorization.7 Legislatures in Oregon, Vermont, and Washington
have enacted laws that permit state residents to end their lives voluntarily
with a lethal dose of medication prescribed by a physician if they are “ter-
minally ill” (Oregon), have a “terminal condition” (Vermont), or have a
life expectancy of less than 6 months (Washington).8 During 2013, similar
legislation was introduced in at least six states, and proposals to specifically
outlaw the practice were introduced in two states. In Montana, legislation
was proposed on both sides of the question, and the state Supreme Court
ruled that physicians who help a person end his or her own life voluntarily
will not be subject to trial for homicide.9 In early 2014, a New Mexico
judge ruled that terminally ill, mentally competent patients have the right
to “aid in dying” under the state constitution.10 If upheld, that decision
may apply statewide. Continuing efforts to revise state laws guarantee that
this controversial issue will be recurrent, at least locally if not nationally
(Eckholm, 2014).
Withholding and Withdrawal of Life Support

Over the years, the issue of withholding and withdrawal (especially) of
life support has stimulated contentious public debates and led to numer-
ous changes in law and policy. These debates have frequently focused on
women or minorities (Holloway, 2011). Many of their cases have prompted
unprecedented public intervention in what would ordinarily be considered
private family decisions.
The most widely publicized, and protracted, legal cases centered around
three young women who left no advance directives—Karen Ann Quinlan,
7 Washington v. Glucksberg, 521 U.S. 702 (1997); Vacco v. Quill, 521 U.S. 793 (1997).
8
Oregon Death with Dignity Act, OR. REV. STAT §§ 127.800-995, 1997; Washington
Death with Dignity Act, R.C.W. 70.245, 2009; Vermont Patient Choice and Control at the
End of Life Act, Act 39, 18 V.S.A. Chapter 113 (2013).
9 Baxter v. Montana, 224 P.3d 1211 (Mont. 2009).
10 Morris v. Brandenberg, D-202-CV-2012-02909 (N.M. 2d Jud. Dist., Jan. 13, 2014).

Nancy Beth Cruzan, and Teresa Marie Schiavo. Their sudden, unexpected,
and permanent unconsciousness (from different causes) ignited strident
public debates.11 In each instance, the courts eventually decided that treat-
ment could be withdrawn, but years of legal wrangling devastated family
members and health care team members. According to Holloway (2011,
p. 147), “When the body belongs to a woman or a member of a racial or
ethnic minority, the privacy [that legal] protections ordinarily grant is al-
ready at risk.” The notoriety of such cases may prompt people to consider
their own end-of-life preferences.12
As of early 2014, two cases involving clashes over cessation of treat-
ment of individuals declared brain dead again received considerable media
attention. One in California involved an African American child whose
family wanted her to continue receiving treatment (Debolt, 2014). The
other was a Latino woman whose family and husband wanted life support
withdrawn, but because she was pregnant, Texas state law was believed to
prohibit it (Hellerman et al., 2014). In the latter case, after 2 months of
public discussion, a judge ruled the Texas law was being misapplied and
ordered an end to treatment. As of June 2014, the child in California had
been kept alive on life support for 6 months after being declared brain dead
(Debolt, 2014). As technology improves the ability to keep body systems
functioning even without mental function, more such cases can be expected.
Distributive Justice and Futile Care

As discussed in previous chapters, when patients and families have a
clear understanding of the course of a terminal illness, the consequences
and experience of cure-oriented versus palliative care, and the quality of life
each produces, most choose the palliative approach. A minority of patients
nevertheless do want aggressive care, and at present, they usually receive it.
As a result, some question whether patients should be entitled to medical
interventions that hold no realistic promise of extending life or improving
or maintaining quality of life. Because many critical care services are ex-
pensive, is this the best way to spend health care dollars?
The principle of autonomy would suggest that individuals should re-
ceive whatever services they want. However, the amount of money society
11 For a fuller legal and historical review of these cases, see Fine (2005) and Johnson (2009).
12 An assessment of 117 individuals aged 50 and older enrolled in an ongoing advance di-
rective study during the period of the Schiavo controversy found that 92 percent had heard
about the case and had taken one or more actions as a result: had become more certain about
their choices (61 percent), talked to their family or friends about what they would want in a
similar situation (66 percent), decided to complete an advance directive (37 percent), discussed
advance care planning with their physician (8 percent), and/or completed an advance directive
(3 percent) (Sudore et al., 2008).

has available to spend on health care is not infinite. There are trade-offs
and opportunity costs, as spending on truly futile health care services may
deprive other people of important benefits, and services that provide the
patient no benefit may be thought of as too expensive regardless of their
cost (Meisel, 2008).
Other countries have faced this issue and come to different conclusions,
while U.S. policy makers have strictly avoided any measures—such as bas-
ing reimbursement policy on comparative effectiveness assessments—that
might have the effect of limiting care (Satvat and Leight, 2011). Ironically,
economists and policy analysts readily acknowledge that allocation deci-
sions are actually common in the United States, based mainly on ability to
pay; they are merely implicit and hidden, rather than explicit, transparent,
and potentially more fair (Lauridsen et al., 2007; Swanson, 2009).
Tensions surrounding this issue might be alleviated if research contin-
ued to show that receiving more medical interventions near the end of life
does not produce better outcomes in terms of longevity or quality of life,
as other chapters of this report have documented. The nation can no longer
pretend that there is no upper limit on what it can afford, and the debate
will continue to be divisive if concern about health care costs results in
some version of a cap on spending.
Making Dying Visible

Given Americans’ acknowledged reluctance to discuss dying, an un-
likely controversy arose in early 2014 about the use of social media to
discuss the consequences of a serious illness. Lisa Bonchek Adams is an
active user of social media—Facebook, Twitter, and her blog13—which she
uses to talk about her metastatic breast cancer and coping with illness and
grief and to urge her online followers to have cancer screenings. Although
her illness is advanced and likely will eventually be the cause of her death,
she was not dying at the time the controversy erupted.
Adams’ use of social media to discuss her disease was questioned in
separate opinion pieces in both The Guardian and The New York Times by
writers who found that her public discussion of her illness was unseemly
(“dying out loud”) and who appeared to counsel passive acceptance as a
more humane (and cheaper) alternative (Keller, 2014). People who follow
Adams’ posts, and Adams herself, were quick to point out the many inac-
curacies and misinterpretations of her intent and her own personal choices
(Elliott, 2014; Tufekci, 2014), and a widely publicized backlash ensued that
resulted in useful media soul searching, namely around using “one woman’s
story as an occasion for debate about what might be wrong with broader
13 See http://lisabadams.com (accessed December 17, 2014).

approaches to dying” (O’Rourke, 2014). Following this public outcry, The

Guardian removed the controversial article from its website (Elliott, 2014)
The controversy highlights Americans’ ambivalence about talking
about dying, the sensitivity with which social justice principles need to be
applied, and the dangers of making facile judgments about the care and
treatment choices made by others. From a media analysis point of view, it
shows evidence of the ability of story and of social media to engage people
in a meaningful way if trust and respect are built over time, as Adams had
done over a period of years.
The 2009 Controversy Over “Death Panels”

A significant setback to more effective advance care planning occurred
when Section 1233 of a House bill (HR 3200, 111th Cong.) that led to the
Patient Protection and Affordable Care Act of 2010 was withdrawn after
false and misleading statements that it would establish “death panels.” The
provision would have reimbursed clinicians for the time spent in advance
care planning with patients. Such conversations would have included dis-
cussion of the documents that can help ensure that patients’ wishes regard-
ing care are followed in the event they become unable to express them.14
Too often, clinicians, patients, and families embark on a treatment jour-
ney for a serious disease without important information and understanding
14 Specifically, Section 1233 of HR 3200, 111th Cong., titled “Advance Care Planning
Consultation,” would have allowed “(A) An explanation by the practitioner of advance care
planning, including key questions and considerations, important steps, and suggested people to
talk to; (B) An explanation by the practitioner of advance directives, including living wills and
durable powers of attorney, and their uses; (C) An explanation by the practitioner of the role
and responsibilities of a health care proxy; (D) The provision by the practitioner of a list of
national and State-specific resources to assist consumers and their families with advance care
planning, including the national toll-free hotline, the advance care planning clearinghouses,
and State legal service organizations (including those funded through the Older Americans
Act of 1965); (E) An explanation by the practitioner of the continuum of end-of-life services
and supports available, including palliative care and hospice, and benefits for such services
and supports that are available under this title; and (F) . . . An explanation of orders regard-
ing life sustaining treatment or similar orders, which shall include—(I) the reasons why the
development of such an order is beneficial to the individual and the individual’s family and
the reasons why such an order should be updated periodically as the health of the individual
changes; (II) the information needed for an individual or legal surrogate to make informed
decisions regarding the completion of such an order; and (III) the identification of resources
that an individual may use to determine the requirements of the State in which such individual
resides so that the treatment wishes of that individual will be carried out if the individual is
unable to communicate those wishes, including requirements regarding the designation of a
surrogate decision-maker (also known as a health care proxy)” (America’s Affordable Health
Choices Act of 2009, HR 3200.IH, 111th Congress, 1st sess. http://www.gpo.gov/fdsys/pkg/
BILLS-111hr3200ih/pdf/BILLS-111hr3200ih.pdf [accessed August 22, 2013]).

of the illness and its likely course, and at times with a conscious effort to
protect another from the truth about these matters (Kumar and Temel,
2013; Piemonte and Hermer, 2013). Without understanding the likely
course of illness and the risks and benefits of treatment choices, patients
(and families) cannot make informed decisions about care (Hajizadeh et
al., 2013; Weeks et al., 2012). By contrast, a good advance care planning
process gives people “a way to think about death and dying”; for some
people, that discussion can allow them to confront dying directly instead
of its being a “vague, unmanageable concept” (Martin et al., 1999, p. 88).
At least an hour is usually needed to explore such topics thoroughly
(Briggs et al., 2004; Detering et al., 2010). According to the National Cen-
ter for Health Statistics (undated), in 2010, the average U.S. physician visit
lasted only 21 minutes, and more than half of visits lasted 15 minutes or
less. Lack of time and lack of payment make clinicians even less likely to
have difficult conversations they may be reluctant to have in the first place.
The allegation of “death panels” was first made in 2009. Although
no aspect of Section 1233 bore any resemblance to the accusation, it was
repeated so often that many people came to regard it as truth. Public edu-
cation efforts by medical and public health authorities were ineffective in
countering this misinformation. The Kaiser Family Foundation’s Health
Tracking Poll of March 2012—2 years after passage of the Affordable
Care Act—revealed that 36 percent of Americans erroneously believed the
law actually contains a provision to “allow a government panel to make
decisions about end-of-life care for people on Medicare,” and 20 percent
responded “don’t know” (KFF, 2012). When that polling question was
repeated in 2013, 40 percent said they believed the law contains this provi-
sion, and 21 percent did not know (KFF, 2013). Thus, 3 years after the act’s
passage, 60 percent of Americans either believed or were unsure whether
“death panels” are law.
The politicization of discussion of end-of-life care has definitely

had an impact on public perceptions of these issues.*
Section 1233 of HR 3200 (111th Cong.) was strongly opposed by con-

servative protestors. House Minority Leader John Boehner and Representa-
tive Thaddeus McCotten (R-MI) said the legislation “may start us down
a treacherous path toward government-encouraged euthanasia” (Boehner
and McCotter, 2009; Pear and Herszenhorn, 2009)—opposition that was

“startling because the need for such legislation had been recognized by both
political parties for some time” (Altman and Shachtman, 2011, p. 282). In
the months before the introduction of HR 3200 with Section 1233, two
bills were introduced in the House and one in the Senate relating to orders
for life-sustaining treatment and advance care planning, two with biparti-
san support.15
Recent polls conducted with the American public also reveal strong
support for advance care planning. In one 2011 poll,
• 97 percent agreed or strongly agreed that “it is important that

patients and their families be educated about palliative care and
end-of-life care options available to them along with curative
treatment”;
• 86 percent thought these discussions should be fully covered by
health insurance; and
• 81 percent thought they should be fully covered by Medicare
(Regence Foundation and National Journal, 2011a).
Similarly, when the California HealthCare Foundation polled 1,669 adult

Californians (including 393 people who had lost a loved one in the previ-
ous year) about their attitudes toward end-of-life topics, respondents were
asked, “One idea is to have insurance plans cover a doctor’s time to talk
with patients about treatment options towards the end of life. Do you
think this is a good idea or a bad idea?” Eighty-one percent of respondents
thought it was a “very good” or “somewhat good” idea (CHCF, 2012).16
Although the question was worded neutrally, this level of support was
significant—especially because public opinion research indicates that 43
percent of American consumers do not trust their health insurance plan
(PRG, 2012).
So why did the important effort represented by Section 1233 fail?
Leaving aside the fear that underlies many Americans’ unwillingness to
contemplate mortality, concerns about paying for advance care planning
were exacerbated by opposition to comparative effectiveness research. Op-
ponents claim that such research will prevent Americans from obtaining
treatments they want and lead to rationing based on an external view of
15 Advance Planning and Compassionate Care Act of 2009, HR 2911, 111th Cong.; Life
Sustaining Treatment and Medical Preferences Act of 2009, HR 1898, 111th Cong.; and
Advance Planning and Compassionate Care Act of 2009, S 1150, 111th Cong. HR 1898 and
S 1150 had bipartisan support. Furthermore, previous versions of S 1150 had been introduced
in 2007 (S 464, 110th Cong.), 2002 (S 2857, 107th Cong.), 1999 (S 628, 106th Cong.), and
1997 (S 1345, 105th Cong.), all with bipartisan support.
16 The group most likely to say it was a bad idea were men aged 65 and older; 30 percent
of this group thought it was a “somewhat bad” or “very bad” idea.

their likely effectiveness or excessive expense. While other countries do

factor cost comparisons into decisions on which services to reimburse with
public monies (Satvat and Leight, 2011), the U.S. approach explicitly pro-
hibits any consideration of treatment costs (Altman and Shachtman, 2011).
The objections to facilitating advance care planning may be misplaced
when, as discussed in Chapter 3, some evidence suggests that people who
do plan for their care most often choose less aggressive care. This choice has
been associated with increased survival, better quality of life, and decreased
stress and psychological impacts on family members (Mack et al., 2010;
Temel et al., 2010; Wright et al., 2008). No association has been found
between having an advance directive discussion or document and earlier
death (Fischer et al., 2010). Indeed, according to Winter and Parks (2012,
p. 741), “Ironically, we found that those who avoid living wills and end-
of-life conversations are the least likely to have treatment wishes respected,
because their proxies are unlikely to know their wishes.”
Improving the care people receive at the end of life by giving them the
care they actually want while saving money by avoiding costly and futile
interventions people do not want could have been a strategy with multiple
benefits for the health system. But the discussion of these two goals—
individual care and collective savings—in the same public conversation may
help explain why the proposed provision “became the lightning rod it did”
(Kaebnick, 2013, p. 2). Accordingly, some commentators would keep the
financial argument completely out of the advance care planning discussion
(Fried and Drickamer, 2010). As a Washington Post opinion piece said,
because health care reform was promoted in large part on the grounds that
it would control rising and unsustainable health care costs (Antos et al.,
2009), in that context, “citizens are not delusional to conclude that the
goal [of Section 1233] is to reduce end-of-life spending” (Robinson, 2009).
In early January 2011, the Centers for Medicare & Medicaid Services
(CMS) withdrew “voluntary advance care planning” as a specified element
of the Medicare annual wellness visit (HHS, 2011). This decision was due
to the discordant views of stakeholders, “including those who disagreed
when the idea of voluntary advance care planning was first proposed under
the Patient Protection and Affordable Care Act” (Holley, 2011). The CMS
final rule acknowledged as much:
It has since become apparent that we did not have an opportunity to con-
sider prior to the issuance of the final rule the wide range of views on this
subject held by a broad range of stakeholders (including members of Con-
gress and those who were involved with this provision during the debate
on the Affordable Care Act). Therefore, we are rescinding the provision of
the final rule that includes voluntary advance care planning as a specified
element of the annual wellness visits providing personalized prevention

plan services, and returning to the policy that was proposed, which was
limited to the elements specified in the Act. (HHS, 2011)
In August 2013, the bipartisan team of Senators Mark Warner of

Virginia and Johnny Isakson of Georgia again pursued the goal of reim-
bursement for advance care planning discussions by introducing the Care
Planning Act of 2013.17 According to Warner, the bill “is about honoring a
patient’s choice, not making it for them” (Mundy, 2013). Nevertheless, the
staying power of the distortions around “death panels” may have doomed
the senators’ initiative.
As Piemonte and Hermer (2013, p. 24) advise, “If we are ever to make
progress toward creating policy that incentivizes physicians to engage in
constructive end of life conversations, we need to do so in a way that ap-
peals to the shared values of those across the political spectrum.” Recent
public opinion research suggests there is ample support for advance care
planning and insurance that covers it. Targeted public education and en-
gagement efforts may move the needle on these policy initiatives.
RECOMMENDATION
Recommendation 5. Civic leaders, public health and other govern-
mental agencies, community-based organizations, faith-based organi-
zations, consumer groups, health care delivery organizations, payers,
employers, and professional societies should engage their constituents
and provide fact-based information about care of people with advanced
serious illness to encourage advance care planning and informed choice
based on the needs and values of individuals.
Specifically, these organizations and groups should
• use appropriate media and other channels to reach their audiences,

including underserved populations;
• provide evidence-based information about care options and in-
formed decision making regarding treatment and care;
• encourage meaningful dialogue among individuals and their fami-
lies and caregivers, clergy, and clinicians about values, care goals,
and preferences related to advanced serious illness; and
• dispel misinformation that may impede informed decision making
and public support for health system and policy reform regarding
care near the end of life.
17 Care Planning Act of 2013 (S 1439, 113th Cong., 1st sess.).

In addition,
• health care delivery organizations should provide information and

materials about care near the end of life as part of their practices
to facilitate clinicians’ ongoing dialogue with patients, families, and
caregivers;
• government agencies and payers should undertake, support, and
share communication and behavioral research aimed at assessing
public perceptions and actions with respect to end-of-life care,
developing and testing effective messages and tailoring them to ap-
propriate audience segments, and measuring progress and results;
and
• health care professional societies should prepare educational ma-
terials and encourage their members to engage patients and their
caregivers and families in advance care planning, including end-of-
life discussions and decisions.
All of the above groups should work collaboratively, sharing successful

strategies and promising practices across organizations.
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ANNEX 6-1:
SELECTED PUBLIC ENGAGEMENT CAMPAIGNS
ON HEALTH-RELATED TOPICS
Campaign Goals Target Populations
VERB™a Increase and maintain physical Primary audience: tweens (children

Launched June activity among tweens 9 to 13)
2002 (children ages 9 to 13) Secondary audience: Parents and
other adult influencers of tweens

Methodology Evidence of Impact or Future Directions
Campaign messages were developed In 2006, 75 percent of surveyed tweens

that spoke directly to tweens, in had awareness of the VERB campaign
their language, and through their (prompted and unprompted), an increase
trusted channels. Outreach to from 67 percent in 2003, the first year of
parents and other adults lagged, data collection.
but when implemented, focused Campaign exposure was found to have a
on gaining their buy-in to the dose-response effect on previous-day
campaign in order to garner physical activity during data collection in
support for the initiative. 2004, 2005, and 2006. This association
Multimedia campaign included paid was statistically significant in 2004 and
television, radio, print, Internet, 2005.
and out-of-home advertising; A dose-response effect of campaign exposure
unpaid added-value public service on attitudes and beliefs relating to physical
announcements; community- activity, including outcome expectations,
based promotions (“Longest Day self-efficacy, and social influences, was
of Play” and “Extra Hour for also found in 2006.
Extra Action”), events, and street
marketing; community, corporate,
and media partnerships; and online
presence.
continued


Mothers Against Prevent underage drinking; Youth, victims and families of
Drunk Driving stop drunk driving; victims of drunk driving, policy
(MADD)b reduce the number of makers
Launched accidents, injuries, and
September 1980 deaths from drunk driving
and support victims of
drunk driving
“The Real Cost” Reduce the number of youth Teens aged 12-17 who are at risk
AntiTobacco cigarette smokers; prevent for using or have experimented
Campaignc teenagers from trying with cigarettes
Announced cigarettes, or if they have
February 2014 already done so, get them
to quit


The Campaign to Eliminate Drunk MADD played major roles in the passage
Driving advocates for strategies of laws relating to the minimum legal
and technologies that reduce drinking age, youth zero tolerance, and
the likelihood of drunk driving, lower blood alcohol limits.
including law enforcement, ignition MADD estimates that it has saved more
interlock devices, and other than 27,000 young lives through the
technologies that can determine implementation of minimum drinking age
alcohol impairment. laws alone.
A PowerTalk21 national day Alcohol-related traffic deaths in the United
encourages parents to talk with States decreased from an estimated 30,000
their children about alcohol. in 1980, when MADD was founded, to
A legislative agenda includes advocacy 16,694 in 2004, although complex factors
for and measurement of enactment likely contributed to this reduction, and it
of new local and national laws is unknown how much of this reduction
relating to the minimum drinking can be attributed to MADD.
age, server liability, and sobriety
checkpoints.
Services for victims include
participation in victim
impact panels, emotional
support, assistance, and court
accompaniment.
Personalization of traffic crash victims
so they were not just numbers
helped people acknowledge not
only the statistics but also the
actual lives cut short.
MADD leaned heavily on the
National Highway Traffic Safety
Administration’s research and
program staff to meet the need for
coordinating policy changes with
science.
A multimedia education campaign The U.S. Food and Drug Administration

educates at-risk teenagers by will evaluate the campaign through a
spotlighting the health hazards of multiyear, nationwide, longitudinal study
smoking in advertisements and on to assess changes in tobacco-related
social media. knowledge, attitudes, and behaviors.
Television, radio, web, cinema, print,
and out-of-home advertising shows
the costs of smoking, including
skin damage, gum disease, tooth
loss, and loss of control due to
addiction. Ads are compelling,
provocative, graphic, and attention
grabbing.
continued


“Truth” Prevent teens from ever trying Primary audience: teenagers aged
AntiTobacco a cigarette and reduce youth 12-17
Campaignd smoking Secondary audience: young adults
Launched aged 18-24
February 2000
“Immunise Increase the number of children Mothers with children up to age 5

Australia” up to age 6 who have been Secondary audience included
Program Social fully immunized family, friends, and health care
Marketing providers
Campaigne
Launched
February 1997
SOURCES:
aAsbury et al., 2008; Berkowitz et al., 2008; Huhman et al., 2004, 2010; Wong et al., 2004,
2008.
bEl-Guebaly, 2005; Fell and Voas, 2006; MADD, 2014; McCarthy and Wolfson, 1996.
cFDA, 2014a,b.


A countermarketing campaign includes Exposure to the campaign is associated with
• television advertisements exposing changes in tobacco-related attitudes,
big tobacco’s marketing and beliefs, and behaviors among teens and
manufacturing practices and the young adults.
health effects, social costs, and Exposure to truth advertisements was
addictiveness of tobacco use; associated with higher odds of intention to
• media and corporate partnerships quit smoking and of having made a quit
with MTV, BET, G4, Fuse, and attempt in the past 12 months.
Virgin Mobile; From 2000 to 2004, it is estimated that truth
• a website and social media, which was significantly associated with reduced
include facts, games, and contests; youth smoking prevalence and prevented
and more than 450,000 teens and young
• a grassroots truth tour that travels adults from using tobacco.
the country to connect with youth From 2000 to 2002, truth saved $1.9-$5.4
and engage them on a peer-to-peer billion in medical care costs to society.
level at concerts, sporting events, The Office of Juvenile Justice and
and other venues, encouraging Delinquency Prevention included truth in
them to rebel by not smoking, its portfolio of effective programs. Truth
typically stopping in more than 50 has also been lauded by the Centers for
cities per tour. Disease Control and Prevention (CDC),
the U.S. Department of Health and
Human Services (HHS), and President
George W. Bush.
Health care provider education and Recognition of the television advertisement
engagement included distribution was very high (80 percent), as was
of more than 60,000 Australian message recall (97 percent of those who
Immunisation Handbooks, a recognized the ad).
column in a provider publication, There was an increase of knowledge and
and an interactive satellite program. behaviors relating to vaccination of young
Community education and engagement children.
included television commercials, After the campaign, 45 percent of parents
print advertisements in magazines reported that they had checked their
and posters in health care facilities, child’s immunization status, compared
three Immunisation Awareness with 36 percent before the campaign;
Days, a national immunization 33 percent reported that they had taken
hotline, and distribution of their children to be immunized during
information materials. the campaign, compared with 22 percent
before the campaign.
Prior to the campaign launch, 76 percent
of children 12 months of age were fully
vaccinated. This proportion increased to
85 percent in the year after the campaign,
88 percent 3 years later, and 91 percent 4
years later.
dALF, 2012, 2014; Emery et al., 2012; Evans et al., 2002; Farrelly et al., 2002, 2005,
2009a,b; Holtgrave et al., 2009; Richardson et al., 2010.
eCarroll and Van Veen, 2002.


Glossary1
Advance care planning: The whole process of discussion of end-of-life care,

clarification of related values and goals, and embodiment of preferences
through written documents and medical orders. This process can start
at any time and be revisited periodically, but it becomes more focused as
health status changes. Ideally, these conversations (1) occur with a person’s
health care agent and primary clinician, along with other members of the
clinical team; (2) are recorded and updated as needed; and (3) allow for
flexible decision making in the context of the patient’s current medical
situation.
Advance directive: A broad term encompassing several types of patient-

initiated documents, especially living wills and documents that name a
health care agent. People can complete these forms at any time and in any
state of health that allows them to do so.
Basic palliative care: Palliative care that is delivered by health care profes-
sionals who are not palliative care specialists, such as primary care clini-
cians, physicians who are disease-oriented specialists (such as oncologists
and cardiologists), and nurses, social workers, pharmacists, chaplains, and
others who care for this population but are not certified in palliative care.
Chronic pain: Ongoing or recurrent pain lasting beyond the usual course of
acute illness or injury or, generally, more than 3 to 6 months and adversely
1 Glossary terms without a citation are definitions created and derived by the committee.
385

affecting the individual’s well-being. A simpler definition for chronic or

persistent pain is pain that continues when it should not (American Chronic
Pain Association, 2013).
Comparative effectiveness research: The generation and synthesis of evi-

dence to compare the benefits and harms of alternative methods for prevent-
ing, diagnosing, treating, and monitoring a clinical condition or improving
the delivery of care (IOM, 2009).
Direct care worker: Nursing assistants, home health and home care aides,
personal care workers and personal care attendants who provide hands-on
care, supervision, and emotional support to people with chronic illnesses
and disabilities. These individuals work in a variety of settings, including
nursing homes, assisted living and other residential care settings, adult day
care, and private homes (Kiefer et al., 2005).
Dual eligibles: Individuals who are jointly enrolled in Medicare and Medic-
aid, and who are eligible to receive benefits from both programs. All dual-
eligible beneficiaries qualify for full Medicare benefits, which cover their
acute and postacute care. Dual-eligible beneficiaries vary in the amount of
Medicaid benefits for which they qualify (CBO, 2013).
Durable power of attorney for health care: Identifies the person (the health
care agent) who should make medical decisions in case of a patient’s
incapacity.
End-of-life care: Refers generally to the processes of addressing the medical,

social, emotional, and spiritual needs of people who are nearing the end of
life. It may include a range of medical and social services, including disease
specific interventions as well as palliative and hospice care for those with
advanced serious conditions who are near the end of life.
Family: Not only people related by blood or marriage, but also close
friends, partners, companions, and others whom patients would want as
part of their care team.
Fee-for-service: A payment system in which a health care program or plan

pays providers a fee for each covered service performed for its enrollees
(CBO, 2013).
Frailty: A clinically recognizable state of increased vulnerability resulting

from aging-associated decline in reserve and function across multiple physi-

GLOSSARY 387
ologic systems such that the ability to cope with everyday or acute stressors
is compromised (Xue, 2011).
Health care agent: An individual designated in an advance directive who

should make medical decisions in case of a patient’s incapacity.
HITECH Act: The Health Information Technology for Economic and Clini-
cal Health (HITECH) Act was enacted under Title XIII of the American
Recovery and Reinvestment Act of 2009 and officially established the Of-
fice of the National Coordinator for Health Information Technology at the
U.S. Department of Health and Human Services. The act includes incentives
designed to accelerate the adoption of health information technology by the
health care industry, health care providers, consumers, and patients, largely
through the promotion of electronic health records and secure electronic
health information exchange.2
Hospice: A service delivery system that provides palliative care for patients
who have a limited life expectancy and require comprehensive biomedical,
psychosocial, and spiritual support as they enter the terminal stage of an ill-
ness or condition. It also supports family members coping with the complex
consequences of illness, disability, and aging as death nears (NQF, 2006).
Learning health care system: A health care system in which science, infor-
matics, incentives, and culture are aligned for continuous improvement
and innovation, with best practices being seamlessly embedded in the care
process, patients and families being active participants in all elements of
care, and new knowledge being captured as an integral by-product of the
care experience (IOM, 2012).
Life-sustaining treatment: Medical procedures that replace or support an

essential bodily function. Life-sustaining treatments include cardiopulmo-
nary resuscitation (CPR), mechanical ventilation, artificial nutrition and
hydration, dialysis, and certain other treatments (HHS, 2008).
Living will: A written or video statement about the kind of medical care a
person does or does not want under certain specific conditions if no longer
able to express those wishes.
2
Health Information Technology for Economic and Clinical Health (HITECH) Act, Title
XIII of Division A and Title IV of Division B of the American Recovery and Reinvestment Act
of 2009 (ARRA), Public Law 111-5, 111th Cong., 1st sess. (February 17, 2009).

Long-term care: An array of health care, personal care, and social services
generally provided over a sustained period of time to people of all ages with
chronic conditions and with functional limitations. Their needs are met in
a variety of care settings such as nursing homes, residential care facilities,
and individual homes (IOM, 2001a).
Meaningful use: The use of certified electronic health record technology in

a purposeful manner (such as electronic medication prescribing), ensuring
that the technology is connected in a manner that provides for the electronic
exchange of health information to improve the quality of care (CDC, 2012).
Medicare hospice benefit: A benefit available under Medicare Part A that

allows Medicare beneficiaries who choose hospice care to receive non-
curative medical and support services for their terminal illness. To be eli-
gible, beneficiaries must be certified by a physician to be terminally ill with
a life expectancy of 6 months or less. Hospice care under Medicare includes
both home care and inpatient care, when needed, and a variety of services
not otherwise covered by Medicare (CMS, 2013).
Medicare Part A: Also known as the Hospital Insurance program, covers

inpatient hospital services and skilled nursing facility, home health, and
hospice care (IOM, 2013).
Medicare Part B: Also known as the Supplementary Medical Insurance

program, helps pay for physician, outpatient, home health, and preventive
services (IOM, 2013).
Medicare Part C (Medicare Advantage Plan): Allows beneficiaries to enroll

in a private plan, such as a health maintenance organization, preferred
provider organization, or private fee-for-service plan, as an alternative to
the traditional fee-for service program. These plans receive payments from
Medicare to provide Medicare-covered benefits, including hospital and phy-
sician services—and in most cases, prescription drug benefits (IOM, 2013).
Medicare Part D: The outpatient prescription drug benefit, established by

the Medicare Modernization Act of 2003 and launched in 2006. The ben-
efit is delivered through private plans that contract with Medicare—either
stand-alone prescription drug plans or Medicare Advantage prescription
drug plans (IOM, 2013).
Palliative care: Care that provides relief from pain and other symptoms,
supports quality of life, and is focused on patients with serious advanced
illness and their families. Palliative care may begin early in the course of

GLOSSARY 389
treatment for a serious illness and may be delivered in a number of ways

across the continuum of health care settings, including in the home, nursing
homes, long-term acute care facilities, acute care hospitals, and outpatient
clinics.
Patient-centered care: Health care that establishes a partnership among

practitioners, patients, and their families (when appropriate) to ensure that
decisions respect patients’ wants, needs, and preferences and that patients
have the education and support they need to make decisions and participate
in their own care (IOM, 2001b).
POLST: Physician Orders for Life-Sustaining Treatment, created with and

signed by a health professional, usually a physician (in some states a nurse
practitioner or physician assistant), for someone who is seriously ill. Be-
cause they are actual doctor’s orders, other health professionals, includ-
ing emergency personnel, are required to follow them. POLST involves a
clinical process designed to facilitate communication between health care
professionals and patients, their families, their health care agents, or their
designated surrogates. The POLST medical orders (forms) cover a range of
topics likely to emerge in care of a patient near the end of life relating to
that patient’s goals of care and treatment preferences.
Specialty palliative care: Palliative care that is delivered by health care

professionals who are palliative care specialists, such as physicians who
are board certified in this specialty, palliative-certified nurses, and palliative
care–certified social workers, pharmacists, and chaplains.
Spirituality: Refers to the way individuals seek and express meaning and
purpose and the way they experience their connectedness to the moment,
to self, to others, to nature, and to the significant or sacred (Pulchalski et
al., 2009).
Surrogate: A person who, by default, becomes the substitute decision maker

for an individual who has no appointed agent (HHS, 2008).
Systems-based approach: An organized, deliberate approach to the iden-

tification, assessment, and management of a complex clinical problem;
may include checklists, treatment algorithms, provider education, qual-
ity improvement initiatives, and changes in delivery and payment models
(Weissman and Meier, 2011).
Vulnerable populations: People from ethnic, cultural, and racial minori-

ties, people with low educational attainment or low health literacy, and

those in prisons or having limited access to care for geographic or financial

reasons. Also included are people with serious illnesses, multiple chronic
diseases, and disabilities (physical, mental, or cognitive); the frail elderly;
those without accesses to needed health services; as well as nearly all people
nearing the end of life.
REFERENCES
American Chronic Pain Association. 2013. Glossary. http://www.theacpa.org/Glossary (ac-
CBO (Congressional Budget Office). 2013. Dual-eligible beneficiaries of Medicare and Med-
icaid: Characteristics, health care spending, and evolving policies. CBO publication no.
4374. Washington, DC: U.S. Government Printing Office.
CDC (Centers for Disease Control and Prevention). 2012. Meaningful use: Introduction.
http://www.cdc.gov/ehrmeaningfuluse/introduction.html (accessed August 5, 2014).
CMS (Centers for Medicare & Medicaid Services). 2013. Medicare hospice benefits. Baltimore,
MD: CMS. http://www.medicare.gov/Pubs/pdf/02154.pdf (accessed August 5, 2014).
HHS (U.S. Department of Health and Human Services). 2008. Advance directives and advance
care planning: Report to Congress. http://aspe.hhs.gov/daltcp/reports/2008/adcongrpt.
htm (accessed August 7, 2013).
IOM (Institute of Medicine). 2001a. Improving the quality of long-term care. Washington,
DC: National Academy Press.
IOM. 2001b. Envisioning the national health care quality report. Washington, DC: National
Academy Press.
IOM. 2009. Initial national priorities for comparative effectiveness research. Washington, DC:
The National Academies Press.
IOM. 2012. Best care at lower cost: The path to continuously learning health care in America.
IOM. 2013. Variation in health care spending: Target decision making, not geography. Wash-
Kiefer, K., L. Harris-Kojetin, D. Brannon, T. Barry, J. Vasey, and M. Lepore. 2005. Measur-
ing long-term care work: A guide to selected instruments to examine direct care worker
experiences and outcomes. Washington, DC: Institute for the Future of Aging Services.
quality of spiritual care as a dimension of palliative care: The report of the consensus
conference. Journal of Palliative Medicine 12(10):885-904.
Weissman, D. E., and D. E. Meier. 2011. Identifying patients in need of a palliative care as-
sessment in the hospital setting: A consensus report from the center to advance palliative
care. Journal of Palliative Medicine 14(1):17-23.
Xue, Q. L. 2011. The frailty syndrome: Definition and natural history. Clinics in Geriatric
Medicine 27(1):1-15.

Appendix A
Data Sources and Methods
The Committee on Approaching Death: Addressing Key End-of-Life

Issues was asked to assess the current state of health care for persons of all
ages with a serious illness or medical condition who are likely approaching
death and who require coordinated care, appropriate personal communi-
cation, and individual and family support. The purpose of this study was
to assess the delivery of health care, social, and other supports to both the
person approaching death and the family; person-family-provider commu-
nication of values, preferences, and beliefs; advance care planning; health
care costs, financing, and reimbursement related to end-of-life care; and
salient education of health professionals, patients, families, employers, and
the public at large. To respond comprehensively to its charge, the com-
mittee examined data from a variety of sources. These sources included a
review of the literature since the release of the 1997 Institute of Medicine
(IOM) report Approaching Death: Improving Care at the End of Life and
the 2003 report When Children Die: Improving Palliative and End-of-Life
Care for Children and Their Families, public input obtained through a
series of workshops and meetings, three commissioned papers, a public
questionnaire soliciting experiences with end-of-life care, and written public
comments on aspects of the study charge. The study was conducted over
a 18-month period.
DESCRIPTION OF THE STUDY COMMITTEE

The study committee comprised 21 individuals with expertise in aging,
palliative care, hospice, pediatrics, mental health, spirituality, caregiving,
391

finance, health administration, public engagement, legal studies, health dis-

parities, ethics, and health systems research. See Appendix G for biographi-
cal sketches of the committee members. The committee convened for six
2-day meetings in February 2013, May 2013, July 2013, September 2013,
December 2013, and February 2014.
LITERATURE REVIEW
Several strategies were used to identify literature relevant to the
committee’s charge. First, a search of bibliographic databases, including
MEDLINE, EMBASE, and SCOPUS, was conducted to obtain articles from
peer-reviewed journals. The keywords used in searches included advance di-
rectives, aging, bereavement, caregivers, chaplains, chronic disease, clinical
and supportive care, communication, community engagement, continuing
medical education, cultural barriers, death and dying, decision making, de-
mographic shifts, disparities, epidemiology, ethics, ethnic groups, financing,
fiscal realities, graduate medical education, health care delivery, health care
quality, hospice, nursing, nursing home care, pain management, palliative
care, patients, payment systems, pediatrics, pharmacy, professional educa-
tion, professional standards, psychosocial care, public health, public-private
partnerships, racial and ethnic differences, religion, social work, spiritual-
ity, team-based care, technology, vulnerable populations, and workforce
development.
Staff sorted through approximately 4,500 articles to identify those that
were relevant to the committee’s charge and created an EndNote database.
In addition, committee members, meeting participants, and members of
the public submitted articles and reports on these topics. The committee’s
database included more than 1,500 relevant articles and reports.
PUBLIC MEETINGS
The committee hosted three public meetings to obtain additional infor-
mation on specific aspects of the study charge. These meetings were held
in conjunction with the committee’s February, May, and July 2013 meet-
ings. Subject-matter experts were invited to the public meetings to present
information and recommendations for the committee’s consideration. The
committee also held open forums at each public meeting at which members
of the public were encouraged to provide testimony on any topics related
to the study charge.
The first public meeting was intended to focus on a discussion of the
committee’s task, as well as provide a summary of the IOM’s two most
recent studies in the topic area, which generated the two reports cited

APPENDIX A 393
above—Approaching Death: Improving Care at the End of Life and When

Children Die: Improving Palliative and End-of-Life Care for Children and
Their Families. The second meeting focused on family caregiver experiences
and needs, as well as national and state policies impacting caregivers. The
meeting also featured representatives of community organizations focused
on end-of-life care, as well as a detailed summary of state-specific programs
and policies for individuals approaching death. The third meeting featured
speakers who discussed clinical ethics, spiritual and religious needs of
individuals near the end of life, and empirical and legal issues regarding
advance directives.
At each public meeting, the committee heard testimony and com-
ments from a broad range of stakeholders, including individuals living
with chronic disease, family members of people approaching death, health
care providers, and individuals representing national and regional advo-
cacy groups. The committee found this input to be highly informative for
its deliberations. Agendas for the three public meetings are presented in
Boxes A-1 through A-3.
ADDITIONAL ACTIVITIES
After the committee’s third meeting in Houston, Texas, some members
participated in mobile rounds. This activity was sponsored by the MD
Anderson Cancer Center’s Texas Community Bus Rounds program. Com-
mittee members had the opportunity to visit patients enrolled in home
hospice care and to observe the delivery of care provided by members of
the palliative care team at the MD Anderson Cancer Center.
The committee also hosted a theatrical performance in August 2013 at
the Chautauqua Institution in New York. The performance by Outside the
Wire included a reading of the ancient Greek play Women of Trachis by
Sophocles as a catalyst for a town hall discussion about death and end-of-
life care as it touches patients, families, and health professionals. The event
was facilitated by Bryan Doerries, artistic director for Outside the Wire,
with performances by T. Ryder Smith (as Heracles), Alex Morf (as Hyllus),
and Bryan Doerries (as the Chorus). The panel comprised Patricia Bomba,
M.D., FACP, vice president and medical director of geriatrics at Excellus
BlueCross BlueShield; Christine Cassel, M.D., president and CEO of the
National Quality Forum; Harvey Fineberg, M.D., Ph.D., then-president of
the IOM; and Philip Pizzo, M.D., professor and former dean at the Stanford
University School of Medicine. The event included a discussion with the
more than 500 attendees about their reactions to the reading and experi-
ences and thoughts related to serious illness, aging, and end-of-life issues.
In addition to testimony at these meetings, the committee solicited
public input on topics relevant to its charge through its website. More than

500 individuals provided written testimony. A summary of these comments

can be found in Appendix C.
COMMISSIONED PAPERS
The committee commissioned three papers from experts in subject-
matter areas relevant to the study charge. These papers were intended to
provide greater analysis and in-depth information on selected topics of
interest to the committee:
• A paper written by Haiden Huskamp of Harvard Medical School

and David Stevenson of the Vanderbilt University School of Medi-
cine provides a detailed analysis of financing and payment methods
in end-of-life care, as well as possible reforms to federal eligibility
and payment policies (see Appendix D).
• A paper written by Melissa Aldridge and Amy Kelley of the Mount
Sinai Icahn School of Medicine reviews the epidemiology of indi-
viduals approaching death, including demographics, clinical char-
acteristics, and patterns of health care utilization. It also reviews
current programs and models of care aimed at high-cost popula-
tions and suggests future research opportunities for evaluating this
part of the population (see Appendix E).
• A paper written by Chris Feudtner, Wenjun Zhong, Jen Faerber,
and Dingwei Dai of The Children’s Hospital of Pennsylvania and
James Feinstein of the Ann & Robert H. Lurie Children’s Hospital
of Chicago reviews the challenges and opportunities of delivering
pediatric end-of-life care and palliative care. The paper provides
analysis on the epidemiology of children approaching death, in
addition to potential implications for utilizing those data to make
changes in pediatric end-of-life care (see Appendix F).

APPENDIX A 395
BOX A-1
PUBLIC SESSION AGENDA
Wednesday, February 20, 2013
National Academy of Sciences

2101 Constitution Avenue NW, Lecture Room
Washington, DC 20418
1:00 p.m. WELCOME AND INTRODUCTIONS
Judith A. Salerno, M.D., M.S.

Leonard D. Schaeffer Executive Officer
Institute of Medicine
David M. Walker and Philip A. Pizzo, M.D.

Co-Chairs
Committee on Approaching Death: Addressing Key End-of-Life
Issues
1:15 p.m. COMMITTEE PERSPECTIVES ON STUDY CHARGE
Committee members will discuss areas that should be considered

during the course of the study.
2:15 p.m. STAKEHOLDER PERSPECTIVES ON STUDY CHARGE
Members of the public will have an opportunity to provide 3 minutes

of comments/testimony in any area related to the study charge.

Susan Friedman
Deputy Director of Government Relations
American Osteopathic Association
Nneka Mokwunye, Ph.D.

Director
Center for Ethics, Washington Hospital Center
Evan DeRenzo, Ph.D.

Senior Clinical Ethicist
Center for Ethics, Washington Hospital Center
William Benson
Principal
Health Benefits ABCs and International Association for Indigenous
Aging
continued

BOX A-1 Continued
Mickey MacIntyre
Chief Program Officer
Compassion & Choices
Rosalind Kipping
President
Compassion & Choices National Capital Area Chapter
Lisa Culver, M.B.A.

Senior Specialist, Clinical Practice
American Physical Therapy Association
Barry Passett, M.D.

Physician
Joan Harrold, M.D.

Medical Director & Vice President of Medical Services
Hospice & Community Care
Kristen Santiago, M.S.

Manager, Strategic Initiatives
C-Change
David Longnecker, M.D.

Director
Association of American Medical Colleges
Sally Welsh, M.S.N., R.N.

CEO
Hospice and Palliative Nurses Association

APPENDIX A 397
Marie Delvalle-Mahoney, M.D.

Physician
Canon Hospice and North Shore Hospitalists, LLC
Mollie Gurian, J.D., M.P.H.
Cameron Muir, M.D.

Executive Vice President, Quality & Access
Capital Caring/The Innovations Group
3:15 p.m. BREAK
3:25 p.m OVERVIEW OF 1997 IOM REPORT

APPROACHING DEATH: IMPROVING CARE AT THE END OF
LIFE
Christine K. Cassel, M.D.

Former Chair of the Committee on Care at the End of Life
OVERVIEW OF 2003 IOM REPORT

WHEN CHILDREN DIE: IMPROVING PALLIATIVE AND END-OF-
LIFE CARE FOR CHILDREN AND THEIR FAMILIES
Pamela S. Hinds, Ph.D., R.N., FAAN

Former Member of the Committee on Palliative and End-of-Life Care
for Children and Their Families
DISCUSSION
5:00 p.m. ADJOURN and RECEPTION

BOX A-2
Wednesday, May 29, 2013
Stanford University School of Medicine

300 Pasteur Drive, Always Building
Stanford, CA 94305
8:30 a.m. WELCOME AND INTRODUCTIONS

Co-Chairs
Issues
8:45 a.m. POLICIES AND CAREGIVING AT THE END OF LIFE
Lynn Friss Feinberg, M.S.W.

Senior Strategic Policy Advisor
Independent Living/Long-Term Care
AARP Public Policy Institute
Ms. Feinberg will provide an overview of policies that support family

caregivers, including future policy needs at the end of life.
9:15 a.m. FAMILY CAREGIVER EXPERIENCES AND NEEDS
Barbara Sourkes, Ph.D.

Kriewall-Haehl Director, Palliative Care Program
Lucile Packard Children’s Hospital
Dr. Sourkes will provide an overview of critical issues that families

face, both the universal themes that cross the life span and those
that are specific to either adult or pediatric care at the end of life.
She will moderate a panel of family caregivers who will provide their
perspectives on challenges in communication, decision making, and
obtaining optimal care for themselves as well as their loved ones.
Panelists:
Joanne Barr
Carla Reeves
Jim Santucci
Alyson Yisrael

APPENDIX A 399
10:30 a.m. BREAK
10:45 a.m. COMMUNITY ORGANIZATIONS FOCUSED ON END-OF-LIFE

CARE
VJ Periyakoil, M.D.
Director
Palliative Care Education and Training
Dr. Periyakoil will provide an overview of the opportunities

and challenges related to providing culturally effective care
for multicultural Americans. She will moderate a panel of
representatives from community-based organizations effectively
meeting the end-of-life needs of diverse populations. Panelists will
describe the services they provide, the varied populations they
serve, and lessons learned about effective strategies for facilitating
access to quality end-of-life care.
Panelists:
Alex Briscoe
Director
Alameda County Health Care Services Agency
Marilyn Ababio
Hospice Systems Coordinator
Alameda County Health Services Agency
Sandy Chen Stokes, R.N., M.S.N.

Founder
Chinese American Coalition for Compassionate Care
Jean Yih
Board Chair
Chinese American Coalition for Compassionate Care

Barbara Beach, M.D.
Co-founder and Medical Director
George Mark Children’s House
12:00 p.m. LUNCH
continued

BOX A-2 Continued
12:45 p.m. STATE-LEVEL PROGRAMS AND POLICIES
Panelists will provide an overview of programs, policies, and

legislation pertaining to care at the end of life.
Susan Tolle, M.D.

Director
Center for Ethics in Health Care
Oregon Health and Science University
Myra Christopher
Kathleen M. Foley Chair for Pain and Palliative Care
Center for Practical Bioethics
Margaret Metzger, J.D.

Health Care Consultant
Wellesley, Massachusetts
2:00 p.m. PUBLIC COMMENT
Members of the public who register will have 3 minutes to comment

on any topic related to the study charge.
Marilyn Golden
Senior Policy Analyst
Disability Rights Education & Defense Fund
Jeffrey Kaufhold, M.D.

Chair, Ethics Committee
Greater Dayton Area Hospital Association
Renée Berry
Chief Executive Officer
BeMoRe
Amy Vandenbroucke, J.D.

Executive Director
National POLST Paradigm Task Force

APPENDIX A 401
Pat Dodson, M.A.

Advisory Board Member
Paula Taubman
Northern California Executive Director
Thomas White, Ph.D.

Member, Board of Directors
Stephanie Harman, M.D.

Clinical Assistant Professor
Stanford School of Medicine
Devon Dabbs
Executive Director and Co-Founder
Children’s Hospice and Palliative Care Coalition
Heidi Engel, D.P.T.

Physical Therapist and Clinical Instructor
University of California, San Francisco Medical Center
L. Alberto Molina
Assistant Director of Interpreter Services
Stanford Hospital & Clinics
Angelica Villagran
VMI Coordinator
Johanna Parker
Lead Interpreter for Education and Training
3:00 p.m. ADJOURN

BOX A-3
Monday, July 22, 2013
Baylor College of Medicine

One Baylor Plaza
Board Room, Room M-100
Houston, TX
1:00 p.m. WELCOME AND COMMITTEE INTRODUCTIONS

Co-Chairs
Issues
Paul Klotman, M.D.

President and CEO
Baylor College of Medicine
1:15 p.m. CLINICAL ETHICS
Jeremy Sugarman, M.D., M.P.H.

Harvey M. Meyerhoff Professor of Bioethics and Medicine
Johns Hopkins Berman Institute of Bioethics
Dr. Sugarman will present an overview of end-of-life decision-making

principles, including respect for patients’ values, goals, choices, and
dignity; advance care planning; surrogate decision making; the role
of current best interests of the incompetent patient; conscientious
objections by health care workers and institutions; justice; and
allocation of limited resources.
Rebecca Dresser, J.D.

Daniel Noyes Kirby Professor of Law
Professor of Ethics in Medicine
Washington University in St. Louis
Former Member, President’s Council on Bioethics
Ms. Dresser will provide an overview of the President’s Council on

Bioethics 2005 report Taking Care: Ethical Caregiving in Our Aging
Society. She will focus on the importance of respect for human life
and dignity and caring for persons who are disabled or enfeebled.

APPENDIX A 403
2:00 p.m. DISCUSSION
2:30 p.m. BREAK
2:45 p.m. ADDRESSING SPIRITUAL AND RELIGIOUS NEEDS
Farr A. Curlin, M.D.

Associate Professor of Medicine
Co-Director, Program on Medicine and Religion
Faculty, MacLean Center for Clinical Medical Ethics
The University of Chicago
Dr. Curlin will examine the importance of spiritual needs and

concerns for patients near the end of life and the value of religion
as a source of support for many patients. He will consider the
value of health care professionals inquiring about those needs and
concerns; the benefits (in terms of patient outcomes) of addressing
those needs as part of high-quality palliative care; the importance of
the conscience and integrity of physicians and health care workers
in end-of-life care; and ethical dilemmas that arise in a diverse,
pluralistic society when the health care professional holds strong
religious beliefs that differ sharply from the religious beliefs of the
patient.
The Rev. Charles R. Millikan, D.Min.

Vice-President for Spiritual Care and Values Integration
The Methodist Hospital System
Houston, Texas
Rev. Millikan will discuss how in a multidisciplinary health care

team in end-of-life care, the patient’s spiritual needs and concerns
can be addressed in a respectful way. He will consider the role of
hospital chaplains in helping patients address these issues in a
nondenominational way, as well as the role of the patient’s own
religious advisors.
3:25 p.m. DISCUSSION
4:00 p.m. ADJOURN DAY #1 PUBLIC SESSION
continued

BOX A-3 Continued
Tuesday, July 23, 2013
Texas Children’s Cancer Center

6701 Fannin Street
Auditorium
Houston, TX
9:00 a.m. WELCOME AND COMMITTEE INTRODUCTIONS

Co-Chairs
Issues
9:15 a.m. EMPIRICAL AND LEGAL ISSUES REGARDING POLST
Susan E. Hickman, Ph.D.

Associate Professor, Indiana University School of Nursing
Co-Director, Research in Palliative and End-of-Life Communication
and Training (RESPECT) Center, Indiana University-Purdue
University Indianapolis (IUPUI)
Senior Affiliate, IU Health Fairbanks Center for Medical Ethics
Dr. Hickman will present a critical overview of empirical evidence

regarding the impact of Physician Orders for Life-Sustaining
Treatment (POLST) on clinical care and outcomes. Does POLST
lead to fewer days in the intensive care unit in the last week of
life, CPR before death, etc.? Do states that have robust POLST
programs have different levels of specific medical interventions in
end-of-life care? Does POLST reduce disputes regarding end-of-life
decisions? Does POLST prevent complicated grieving by survivors
or decision regret?
Rebecca Sudore, M.D.

Associate Professor of Medicine
University of California, San Francisco
Dr. Sudore will review challenges and limitations in advance care

planning and POLST, with particular attention to vulnerable patients.
She will consider the importance of conversations in advance care
planning, as well as documentation of orders and the challenges
entailed in improving these conversations.

APPENDIX A 405
Alan Meisel, J.D.

Director, Center for Bioethics and Health Law
Dickie, McCamey and Chilcote Professor of Bioethics, and Professor
of Law and Psychiatry
University of Pittsburgh
Mr. Meisel will discuss legal issues that might present challenges to
a patient and family who wish to use the POLST form or other types
of advance care planning. May a surrogate complete a POLST for
a patient who has already lost decision-making capacity? Are there
restrictions on using POLST to decline feeding tubes in patients
with severe dementia or stroke? Are these limitations communicated
effectively to patients and families using POLST? Have there been
cases involving POLST in the courts? What other legal approaches
to advance care planning have states implemented, such as default
priority for surrogates and oral appointment of health care proxies,
and how have they worked in practice?
10:00 a.m. DISCUSSION
10:45 a.m. BREAK
11:00 a.m. PUBLIC COMMENT
Members of the public who register will have 5 minutes to comment

on any topic related to the study charge.
Diane Coleman
President and CEO
Not Dead Yet
Cynthia Taniguchi
Project Manager, Provider Implementation
McKesson Specialty Health
Donald Molony, M.D.

Professor of Medicine
University of Texas Houston Medical School
Robert J. Hesse, Ph.D.

Vice Chairman, Institute for Spirituality and Health
The Texas Medical Center
12:00 p.m. ADJOURN


Appendix B
Recommendations of the Institute of

Medicine’s Reports Approaching Death
(1997) and When Children Die (2003):
Progress and Significant Remaining Gaps
Significant progress has been made in improving the care of people

near the end of life since the publication of the Institute of Medicine (IOM)
reports Approaching Death: Improving Care at the End of Life (IOM,
1997) and When Children Die: Improving Palliative and End-of-Life Care
for Children and Their Families (IOM, 2003), yet gaps still remain. This
appendix highlights just some of the advances that have been made, as well
as a selection of the areas in which efforts are still needed.
APPROACHING DEATH
1997 Recommendation 1: People with advanced, potentially fatal illnesses
and those close to them should be able to expect and receive reliable, skill-
ful, and supportive care.
• As of 2009, 63 percent of U.S. hospitals with at least 50 beds, 85

percent of hospitals with more than 300 beds, and all Veterans Ad-
ministration hospitals reported having a palliative care team—an
increase of 138 percent from 2000 (CAPC, 2011; Edes et al., 2007;
Morrison et al., 2011). In 2011, an estimated 1.65 million patients
received hospice services; a million of them died under hospice care
during that year (NHPCO, 2012a). In comparison, Approaching
Death (IOM, 1997) notes that 390,000 patients were served by
hospice in 1995, representing just 17 percent of all deaths that year.
407

• In 2001, 19 percent of all Medicare decedents accessed hospice

for 3 or more days. By 2007, this proportion had increased to 30
percent (NHPCO, 2012a).
• A number of demonstration projects related to end-of-life care,
including those of the Sutter Medical Network, Kaiser Permanente,
and Aetna’s Compassionate Care Program, have been completed,
creating potential new care delivery models (Brumley and Hillary,
2002; Brumley et al., 2007; Krakauer et al., 2009; Labson et al.,
2013; Meyer, 2011; Spettell et al., 2009).
• Additional pilot efforts have taken place in difficult-to-serve rural
areas.
– A National Rural Health Association Technical Assistance
Project, funded by the Health Resources and Services Ad-
ministration, Office of Rural Health Policy (HRSA-ORHP),
provided assistance in “Community Oriented Planning for Pal-
liative Care” to three rural communities. One of these efforts
focused on linkages among service agencies and developed a
volunteer program to support patients with complex care is-
sues (Stratis Health, 2009).
– A separate rural pilot program involved 10 rural Minnesota
communities that established or strengthened local palliative
care programs through the Minnesota Rural Palliative Care
Initiative (October 2008 to April 2010). As of April 2011, 6 of
the 10 were enrolling patients and providing interdisciplinary
palliative care services, while the other 4 had developed and/or
improved processes to enhance palliative care services (Stratis
Health, 2011).
• The Center to Advance Palliative Care,1 established at Mount Si-
nai School of Medicine in New York City with funding from the
Robert Wood Johnson Foundation (RWJF) in 1999, is a national
resource providing health care professionals with tools, training,
and technical assistance to increase access to quality palliative care
services in hospitals and other health settings. It also works to
improve relevant payment and regulatory policies.
Remaining gaps:
• Only about two-thirds of hospitals nationwide offer some type
of palliative care program, and the lessons learned in centers of
palliative care excellence are not available to everyone (NHPCO,
2012a).
1 See http://www.capc.org (accessed December 17, 2014).

APPENDIX B 409
• Patients in small hospitals (those with fewer than 50 beds, which

represent about one in five U.S. hospitals), public hospitals (54
percent), and sole community provider hospitals (40 percent)2 have
much less access to palliative medicine. These institutions also typi-
cally serve uninsured and rural Americans (NHPCO, 2012a).
• Accreditation standards for hospitals and nursing homes do not
currently require that hospitals offer a quality palliative care pro-
gram; however, the Joint Commission has established a voluntary
advanced certification program for palliative care programs (Joint
Commission, 2014).
• The rate of health care transitions among fee-for-service Medicare
beneficiaries increased between 2000 and 2009, including the rate
of transitions both in the last 90 days of life and in the last 3 days
of life (Teno et al., 2013).
• Caregiving takes an enormous emotional, physical, and financial
toll on individuals, and this role could be better supported by
health care providers and employers and through public policy
(Abernethy et al., 2008; Coalition to Transform Advanced Care,
2013; DOL, 2013; Kilbourn et al., 2011; Payne et al., 1999;
Reinhard et al., 2012).
• Despite some positive trends in integrating palliative and disease-
specific treatment, greater efforts are needed (Matlock et al., 2010).
As long as palliative care is considered “separate from” the main
business of health care, it is vulnerable to being omitted or ignored.
1997 Recommendation 2: Physicians, nurses, social workers, and other

health professionals must commit themselves to improving care for dying
patients and to using existing knowledge effectively to prevent and relieve
pain and other symptoms.
• The number of palliative care teams within hospital settings has

increased by approximately 148 percent, from more than 600 in
2000 to more than 1,600 in 2012 (CAPC, 2012).
Remaining gaps:
• Studies of pain management and symptom burden have shown
undertreatment by health care providers (Kutner et al., 2001; Swetz
et al., 2012; Wilkie and Ezenwa, 2012).
• A 2011 IOM report also notes persistent undertreatment of pain
near the end of life (IOM, 2011).
2 Totals add to more than 100 percent because some hospitals are in more than one category.

• There is little objective information about the knowledge and at-

titudes of health professionals regarding care of patients near the
end of life.
• A greater emphasis is needed on team care and coordinated services
across care settings.
1997 Recommendation 3: Because many problems in care stem from sys-

tem problems, policy makers, consumer groups, and purchasers of health
care should work with health care practitioners, organizations, and re-
searchers to
(a)
strengthen methods for measuring the quality of life and other
outcomes of care for dying patients and those close to them;
• The National Consensus Project for Quality Palliative Care (NCP),

launched in 2002, represents the nation’s major hospice and pallia-
tive care organizations and has developed and disseminated three
versions of its Clinical Practice Guidelines for Quality Palliative
Care (2004, 2009, and 2013) (Dahlin, 2009, 2013; NCP, 2004).
• The National Quality Forum (NQF) used these guidelines to de-
velop its report A National Framework and Preferred Practices
for Palliative and Hospice Care Quality, published in 2006 (NQF,
2006).
• With the Assessing Care of Vulnerable Elders (ACOVE) initiative,
RAND Corporation developed a large set of quality indicators,
including indicators relevant or specific to care near the end of life
(Walling et al., 2010; Wenger et al., 2007).
• The PEACE Project (Prepare, Embrace, Attend, Communicate,
Empower) reviewed 174 potential measures of quality for hospice
and palliative care, and gave 34 high ratings (Hanson et al., 2010;
Schenck et al., 2010).
• The Measuring What Matters initiative, an effort by the American
Academy of Hospice and Palliative Medicine (AAHPM) Quality
and Practice Standards Task Force and the Hospice and Palliative
Nurses Association (HPNA) Research Advisory Group, seeks to
identify a set of basic, advanced, and aspirational evidence-based
performance measures that are relevant to all hospice and pallia-
tive care programs (American Academy of Hospice and Palliative
Medicine, undated-a,b,c).
• A Toolkit of Instruments to Measure End-of-Life Care was devel-
oped3 and is accepted and widely used in the field (Mularski et al.,
2007).
3
See
http://www.chcr.brown.edu/pcoc/toolkit.htm (accessed December 17, 2014); http://
www.chcr.brown.edu/pcoc/resourceguide/resourceguide.pdf (accessed December 17, 2014).

APPENDIX B 411
– as the “family interview” quality assessment tool by almost 900

National Hospice and Palliative Care Organization (NHPCO)
hospice member organizations, which have created a database
of several hundred thousand family surveys that are a rich
resource for new research, including studies of the quality of
care and outcomes for patients with dementia and cancer;
– in informing the development of national, state, and local in-
dicators of end-of-life care quality; and
– in a range of other research.
(b)
develop better tools and strategies for improving the quality of care
and holding health care organizations accountable for care at the
end of life;
• NHPCO now reports data related to patient outcomes and mea-

sures; family evaluation of hospice care, palliative care, and be-
reavement services; and team attitudes and relationships (NHPCO,
undated-a).
• Medicare’s Hospice Quality Reporting Program (HQRP), estab-
lished under the Patient Protection and Affordable Care Act (ACA),
requires hospice programs to report quality data publicly (CMS,
undated; HHS, 2013).4
– Hospices were initially required by the Centers for Medicare
& Medicaid Services (CMS) to report on two measures: first
reports on Quality Assessment and Performance Improvement
programs were due in January 2013, and those on pain control
performance, using NQF’s pain measure (#0209), by April
2013.
– Beginning in 2014, however, these previously used measures
will be discontinued, and the hospices will be required un-
der the HQRP to complete and submit to CMS the Hospice
Item Set (HIS), which collects data on seven NQF-endorsed
measures.
– In addition to the HIS quality reporting requirements, CMS
will require that hospices, starting in 2015, complete the Hos-
pice Experience of Care Survey, which will gather information
from caregivers of deceased hospice patients about patient and
family experiences with hospice care.
• NHPCO has developed a Quality Partners performance improve-
ment program and additional quality resources for hospices
(NHPCO, undated-b).
2d sess. (March 23, 2010), § 3004(c).

(c)
revise mechanisms for financing care so that they encourage rather
than impede good end-of-life care and sustain rather than frustrate
coordinated systems of excellent care;
• The Medicare Hospice Benefit covered hospice services for more

than 1.1 million beneficiaries in 2010 (MedPAC, 2012). To elect
the Medicare Hospice Benefit, patients must forgo all curative
treatments and opt solely for comfort care. Eligibility is based on
a life expectancy of 6 months or less (CMS, 2013a).
• Demonstration projects at Sutter Medical Network, Kaiser Per-
manente, and Aetna, noted above, have successfully tested an ex-
panded version of hospice that uses the concept of “concurrent
care,” which does not require patients to give up curative treat-
ments, a major barrier to hospice enrollment (Brumley and Hillary,
2002; Brumley et al., 2007; Krakauer et al., 2009; Labson et al.,
2013; Meyer, 2011; Spettell et al., 2009).
• The ACA amends current law regarding pediatric hospice care to
eliminate the requirement for electing either curative or hospice
care when it is paid for through Medicaid and state Children’s
Health Insurance Programs (CHIPs).5
• The ACA further calls for a concurrent care demonstration pro-
gram to test whether concurrent care would save money while
improving Medicare patients’ quality of life.6 In March 2014, CMS
launched the Medicare Care Choices Model, which will allow se-
lected Medicare-certified hospices to provide palliative care services
to patients with certain serious advanced illnesses who meet the
Medicare Hospice Benefit eligibility criteria but are still receiving
curative care (CMS, 2014).
• A new Medicare-Medicaid Coordination Office is established un-
der the ACA, and is charged with facilitating the integration and
alignment of federal Medicare and state Medicaid funding into a
single source of financial support (CMS, 2013b).
• Models of managed care for the dually eligible have shown prom-
ise among certain populations, including individuals in nursing
homes and those with advanced dementia (Brown and Mann,
2012; Goldfeld et al., 2013; Kane et al., 2002).
5 Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong.,
2d sess. (March 23, 2010), Section 2302 Concurrent Care for Children.
6 Patient Protection and Affordable Care Act of 2010, Public Law 111-148, 111th Cong.,
2d sess. (March 23, 2010), Section 3140 Medicare Hospice Concurrent Care Demonstration
Program.

APPENDIX B 413
Remaining gaps:
• The hospice care payment methodology and the base rates have
not been recalibrated since the benefit was established in 1983
(MedPAC, 2012).
• In 2009, the Medicare Payment Advisory Commission (MedPAC)
made recommendations to reform the hospice payment system so
it would provide relatively higher payments at the beginning and
end of the hospice stay (U-shaped payment curve), rather than the
current equal daily payment (MedPAC, 2009).
• Under a 2009 CMS rule, the Budget Neutrality Adjustment Factor
(BNAF)—a key factor in calculating the Medicare hospice wage
index—will be phased out over 7 years, resulting in a permanent
reduction in hospice reimbursement rates of approximately 4.2
percent (CMS, 2009a; Hospice Action Network, 2013).
• The ACA alters the Medicare hospice rate formula, wage index,
and payment rate through
– introduction of a productivity adjustment factor, which will
lower annual hospice payments by an additional 11.8 percent
over the next decade (CMS, 2013c; Hospice Action Network,
2013); and
– reduction of the hospice market basket update by 0.3 percent-
age points (CMS, 2013c).
• CMS’s Bundled Payments for Care Improvement Initiative specifi-
cally excludes hospice services (CMS, 2013d).
• Financial incentives still drive the volume of services delivered and
lead to fragmentation of the health care system and high costs
(Kamal et al., 2012; Kumetz and Goodson, 2013; MedPAC, 2011;
Schroeder and Frist, 2013).
(d)
reform drug prescription laws, burdensome regulations, and state
medical board policies and practices that impede effective use of
opioids to relieve pain and suffering.
• In 2004, the Federation of State Medical Boards of the United

States, Inc., adopted new revised management guidelines as the
“Model Policy for the Use of Controlled Substances for the Treat-
ment of Pain,” emphasizing the problem of undertreatment (FSMB,
2004).7
7
State-by-state opioid prescribing policies can be found at http://www.medscape.com/
resource/pain/opioid-policies (accessed December 17, 2014).

• As part of its End of Life initiatives, RWJF funded researchers at

the University of Wisconsin to support their work in assessing laws,
regulations, and guidelines relating to pain treatment (Patrizi et al.,
2011; RWJF, 2008).
– Achieving Balance in Federal and State Pain Policy: A Guide
to Evaluation, published by the University of Wisconsin Pain
& Policy Studies Group in 2000 and updated in 2003, pres-
ents findings of a systematic evaluation of pain-related policies
of the federal government, the 50 states, and the District of
Columbia. Subsequent versions of this guide have been sup-
ported by the American Cancer Society, the American Cancer
Society Cancer Action Network, and the LIVESTRONG Foun-
dation (Pain & Policy Studies Group, 2014a).
– From 2000 to 2003, RWJF funded the development of Achiev-
ing Balance in State Pain Policy: A Progress Report Card,
which graded all states based on their policy content. The
report card is currently supported by the American Cancer
Society, the American Cancer Society Cancer Action Network,
and the LIVESTRONG Foundation (Pain & Policy Studies
Group, 2014b). The most recent report card, for calendar year
2013, found that
– 96 percent of states received a grade higher than C, an
improvement from 88 percent in 2008;
– 15 states received a grade of A, indicating state policies
that best balance pain management and drug control, while
only 8 states (Alaska, Illinois, Louisiana, Missouri, Nevada,
Oklahoma, Tennessee, and Texas) received below a B, and
no states received below a C; and
– since 2006, no state has seen a reduction in its pain policy
grade.
Remaining gaps:
• Physicians report persistent opinions—voiced by patients’ families,
other physicians, or other health care professionals—that common
palliative practices, including palliative sedation and prescribing
of pain medications for symptom management, are euthanasia or
murder (Goldstein et al., 2012).
• A 2007 review of state pain policies notes that “potential barriers
[to pain management] are restrictive drug control and health care
policies governing the medical use of prescription medications for
pain management, palliative care, or end-of-life care” (Gilson et al.,
2007, p. 342).

APPENDIX B 415
• A 2011 IOM report also recognizes persistent undertreatment of

pain near the end of life. The report acknowledges that restrictive
regulatory and law enforcement policies negatively impact the ap-
propriate use of opioid drugs for all patients experiencing pain,
and that “frequently [hospice and palliative care programs] must
rely on opiate medications at levels that would be inappropriate in
other, nonterminal situations” (IOM, 2011, p. 85).
1997 Recommendation 4: Educators and other health professionals should

initiate changes in undergraduate, graduate, and continuing education to
ensure that practitioners have relevant attitudes, knowledge, and skills to
care well for dying patients.
• AAHPM, which began with 250 founding member physicians in

1988, had nearly 5,000 members as of mid-2013 (American Acad-
emy of Hospice and Palliative Medicine, undated-d).
• As of the start of the 2014-2015 academic year, there were 107
accredited subspecialty training fellowship programs in the United
States, collectively producing approximately 227 new palliative
medicine physicians per year (ACGME, 2014).
• Accreditation standards for undergraduate baccalaureate nursing
programs, adopted by the American Association of Colleges of
Nursing in 2008, specify that all baccalaureate nursing graduates
should be prepared to “implement patient and family care around
resolution of end-of-life and palliative care issues, such as symptom
management, support of rituals, and respect for patient and family
preferences” (AACN, 2008, p. 31).
• The Education in Palliative and End-of-Life Care (EPEC) project
began in 1999 as a train-the-trainer program for physicians and
other health professionals, geared to teaching both its curriculum
and educational approaches to improving palliative care. As of
2010, there were more than 2,000 EPEC trainers in the United
States and 16 other countries (EPEC, 2012).
• In 2000, the End-of-Life Nursing Education Consortium (ELNEC)
project began providing undergraduate and graduate nursing fac-
ulty, continuing education providers, staff development educators,
specialty nurses, and others with training in palliative care so
they could teach this essential information to nursing students and
practicing nurses. As of April 2013, more than 15,400 nurses and
other health care professionals had received ELNEC training, and
in turn had returned to their institutions and communities to train
more than 390,000 nurses and other health care providers (AACN,
2014a; ELNEC, 2013).

• Around this same time, the End-of-Life/Palliative Education Re-

source Center8 was launched to share educational resource material
among the community of health professional educators involved in
palliative care education. It continues to be an authoritative source
of information today.
• The Project on Death in America (PDIA) Faculty Scholars program
(1995-2003) selected 87 scholars (from 740 applicants), 83 percent
of whom were physicians and 13 percent nurses. An analysis of the
scholars’ subsequent careers found that the program was “success-
ful in . . . developing a core group of clinical and academic lead-
ers to advance the field of palliative care” (Sullivan et al., 2009,
p. 157).
• PDIA’s Social Work Leadership and Development Awards funded
42 social work leaders and led to the first Social Work Summit on
End-of-Life and Palliative Care in 2002 (PDIA, 2004; SWHPN, un-
dated). The work continues today under the auspices of the Social
Work Hospice and Palliative Care Network, which has more than
500 members.9
Remaining gaps:
• The medical school curriculum is required to cover end-of-life care
(Liaison Committee on Medical Education, 2013); education in
palliative care is offered in 99 percent of U.S. medical schools, usu-
ally as part of another course; and all medical schools offer some
type of instruction on death and dying, although the average total
instruction is only 17 hours in the 4-year curriculum (Dickinson,
2011).
• While structured medical school curricula in hospice and pallia-
tive medicine, especially those that incorporate experiential and
clinical aspects, have demonstrated effectiveness, they still are not
widespread (Quill et al., 2003; Ross et al., 2001; von Gunten et al.,
2012).
• Hospice and palliative medicine content is relatively lacking in
many board certification examinations in specialties in which basic
palliative care is especially relevant, accounting for only 2 percent
of the board certification exam in oncology (ABIM, 2013a) and 3
percent in general internal medicine (ABIM, 2013b).
• In 2011-2013, only 3 of the 49 accredited U.S. schools of public
health offered a course on end-of-life care policy. Another 6 public
8 See http://www.eperc.mcw.edu/EPERC.htm?docid=67983 (accessed December 17, 2014).

9 See http://www.swhpn.org (accessed December 17, 2014).

APPENDIX B 417
health schools offered some content on end-of-life concerns, but

most of these offerings embedded this content in courses on aging
policy and so did not consider the entire life span (Lupu et al.,
2013).
1997 Recommendation 5: Palliative care should become, if not a medical

specialty, at least a defined area of expertise, education, and research.
• In 2006, the American Board of Medical Specialties approved

hospice and palliative medicine as a medical subspecialty of 10
participating boards, and the Accreditation Council for Graduate
Medical Education voted to accredit fellowship training programs
in this subspecialty. By 2009, CMS had approved palliative medi-
cine as a subspecialty (CMS, 2009b).
• In the United States, there were 2,887 physicians certified by the
American Board of Hospice and Palliative Medicine as of 2008,
and there were 566 advanced practice nurses certified by the Na-
tional Board for Certification of Hospice and Palliative Nurses
(NBCHPN®) and almost 10,771 NBCHPN®-certified registered
nurses as of March 2011 (CAPC, 2011). Between 2008 and 2012,
6,356 physicians across all 10 participating board specialties be-
came board certified in hospice and palliative medicine (ABEM,
2013; ABFM, 2013; ABIM, 2013c; ABP, 2013; ABPMR, 2013;
ABPN, 2013; ABS, 2013).10
• Approximately 4,400 physicians currently practice hospice and pal-
liative medicine, as defined by board certification or membership in
AAHPM (Lupu and AAHPM Workforce Task Force, 2010). Most
practice this specialty part-time, yielding an estimated palliative
physician workforce of 1,700-3,300 full-time equivalent (FTE)
physicians.
• Since 2008, the National Association of Social Workers (NASW)
has offered specialty certification in hospice and palliative care; as
of 2014, there are 18 advanced practice specialty credentials of-
fered by NASW (NASW, 2014).
• Concepts associated with pain management and palliative care are
part of curriculum standards in pharmacotherapy (ACPE, 2011).
• A 2012 survey found that 82 percent of pharmacy schools offered
some coursework on end-of-life care, typically as learning mod-
ules or lectures rather than devoted classes (Dickinson, 2013); on
average, 6.2 hours was devoted to teaching students about death
10 Personal communication, S. McGreal, ABMS, February 4, 2014.

and dying (Dickinson, 2013), an increase from 3.9 hours in 2001

(Herndon et al., 2003).
• Chaplains are certified by the Board of Chaplaincy Certification
Inc., an affiliate of the 4,500-member Association of Professional
Chaplains (BCCI, 2013). Specialty certification in palliative care
(BCC-PCC) was introduced in 2013 as the first in an expected
series of specialty chaplaincy certifications (APC, 2013).
Remaining gaps:
• An estimated 4,487 hospice and 10,810 palliative care physi-
cian FTEs are needed to staff the current number of hospice- and
hospital-based palliative care programs at appropriate levels (Lupu
and AAHPM Workforce Task Force, 2010).
• The Board of Pharmacy Specialties has considered adding pain
and palliative medicine as a specialty, but it has yet to do so (BPS,
2011).
1997 Recommendation 6: The nation’s research establishment should de-

fine and implement priorities for strengthening the knowledge base for
end-of-life care.
• In 1997, the Director of the National Institutes of Health (NIH)

designated the National Institute of Nursing Research (NINR) as
NIH’s lead institute for end-of-life research. In 2009, NINR estab-
lished the Office of Research on End-of-Life Science and Palliative
Care, Investigator Training, and Education (OEPC) (NINR, 2012).
• In 2013, NINR published Building Momentum: The Science of
End-of-Life and Palliative Care: A Review of Research Trends
and Funding, 1997-2010, which reviews the state of the research
in end-of-life and palliative care since the 1997 IOM report Ap-
proaching Death was issued (NINR, 2013a). Among its findings
are the following:
– There was a tripling of publications on end-of-life and pallia-
tive care between 1997 and 2010.
– Published studies focus primarily on advance care planning,
pain and symptom management, and locations and types of
care.
– Research was supported by 37 federal organizations and more
than 500 private nongovernmental organizations; an increase
in funding from NIH has been seen since 1997, but so, too, has
a reduction in private funding (from 48.5 percent of research
support in 1997 to 24.8 percent in 2010).

APPENDIX B 419
• With support from a number of public and private funders, the

National Palliative Care Research Center (NPCRC)11 establishes
priorities for palliative care research, works to develop a new gen-
eration of palliative care researchers, and coordinates and supports
studies of ways to improve care for patients and families. The cen-
ter’s partner organization, the Center to Advance Palliative Care,
enables rapid translation of these research findings into clinical
practice.
• The Palliative Care Research Cooperative Group (PCRC), estab-
lished in 2010, offers a mechanism for connecting researchers and
clinicians across varied clinical settings; it facilitates timely comple-
tion of complex studies, including randomized controlled trials,
by pooling resources and expertise across sites (Abernethy et al.,
2010).
• The Patient-Centered Outcomes Research Institute (PCORI) was
established under the ACA. Its research priorities and agenda are in
line with many of the topics that require further study in the field
of palliative care (PCORI, 2014).12
Remaining gaps:
• The 2013 NINR review mentioned above (NINR, 2013a) found
a dearth of research on racial and ethnic populations; pediatric
populations; caregiving; and ethical, cultural, and spiritual aspects
of end-of-life care.
• A 2006 study found that more than 25 percent of published pal-
liative medicine research was performed with no acknowledged
extramural funding, and fewer than one-third of published studies
were supported by NIH funding (Gelfman and Morrison, 2006).
• As of 2009, there were only 114 active NIH grants supporting pal-
liative care research (CAPC, 2011).
• Palliative care accounted for only 0.2 percent of all NIH grants
between 2006 and 2010 (Gelfman et al., 2010).
• The present report identifies a number of areas that warrant further
research, including but not limited to
– the development and application of evidence-based measures
of quality of care near the end of life;
– approaches to prognosis and the impact of more accurate prog-
nosis on quality of care, quality of life, and other outcomes;
11 Seehttp://www.npcrc.org (accessed December 17, 2014).

2d Sess. (January 5, 2010), § 6301.

– diffusion of models of end-of-life care that have been found to

be effective;
– the impact of the organization and financing of the health care
system on the delivery, quality, and cost of care for patients
near the end of life;
– financial, physical, and emotional impacts on caregivers;
– patient-provider communication and patient and family deci-
sion making near the end of life;
– pediatric advance care planning and involvement of pediatric
patients in decision making about their care near the end of
life; and
– the development of meaningful-use criteria relating to end-of-
life care and advance care planning and the impact of these
criteria on outcomes.
1997 Recommendation 7: A continuing public discussion is essential to

develop a better understanding of the modern experience of dying, the op-
tions available to patients and families, and the obligations of communities
to those approaching death.
• Since 1997, numerous public education efforts focused on issues

of advance care planning and palliative care have been launched.
These campaigns have had varying sponsorship, and some have
been coalition efforts. Their goals have varied, but many have
stressed
– the importance of advance care planning (“having the
conversation”),
– what palliative care and hospice are, and
– the right to good pain management.
• Numerous public education and engagement efforts and campaigns
have begun and/or continue, including
– The Conversation Project and the Institute for Healthcare Im-
provement’s (IHI’s) Conversation Ready Initiative (http://the
conversationproject.org);
– DeathWise (https://www.deathwise.org);
– Engage with Grace (http://www.engagewithgrace.org);
– Death Cafes (http://www.deathcafe.com);
– Death over Dinner (http://www.deathoverdinner.org, http://
blog.tedmed.com/?tag=death-over-dinner [accessed December
17, 2014]);
– Project Compassion (http://project-compassion.org);

APPENDIX B 421
– Aging with Dignity and Five Wishes (http://agingwithdignity.

org; http://www.agingwithdignity.org/five-wishes.php [accessed
December 17, 2014]);
– Community Conversations on Compassionate Care (Compas-
sion and Support) (https://www.compassionandsupport.org);
– National Healthcare Decisions Day (http://www.nhdd.org);
– It’s About How You LIVE campaign (NHPCO Caring Connec-
tions) (http://www.caringinfo.org/i4a/pages/index.cfm?pageid=
3380 [accessed December 17, 2014]);
– Life Before Death (The Lien Foundation) (http://www.life
beforedeath.com/index.shtml [accessed December 17, 2014]);
– Before I Die (http://beforeidie.cc);
– Death Clock (http://www.deathclock.com);
– Time of Death (http://www.sho.com/sho/time-of-death/home
[accessed December 17, 2014]);
– PBS’s “On Our Own Terms: Moyers on Dying” (http://www.
pbs.org/wnet/onourownterms [accessed December 17, 2014]);
– Honoring Choices, the Minnesota/Twin Cities Public Televi-
sion documentary series and related materials (http://www.
honoringchoices.org);
– A Good Day to Die (http://thediemovie.wordpress.com);
– Ways to Live Forever (http://trailers.apple.com/trailers/
independent/waystoliveforever [accessed December 17, 2014]);
– How to Die in Oregon (http://www.howtodieinoregon.com/
trailer.html [accessed December 17, 2014]);
– Amour (http://www.sonyclassics.com/amour);
– PBS Frontline documentary “Facing Death” (http://www.pbs.
org/wgbh/pages/frontline/facing-death [accessed December 17,
2014]); and
– Inside Out documentary “Quality of Death: End of Life Care
in America” (http://insideout.wbur.org/documentaries/quality
ofdeath [accessed December 17, 2014]).
• Two of the National Rural Health Association’s three Technical
Assistance Project community-based teams—in Franklin, North
Carolina, and Ruleville, Mississippi—focused their efforts on de-
veloping provider and community education and outreach plans
around advance directives (Stratis Health, 2009).
Remaining gaps:
• Misunderstandings persist among both the general public and
health care providers about the differences in meaning of such
terms as “palliative care,” “end-of-life care,” and “hospice,” as

well as “agent,” “surrogate,” “caregiver,” and “family” (CAPC,

2011; CHCF, 2012).
• The persistent reluctance to talk about death—among clinicians,
patients and families, and policy makers—remains a barrier to
appropriate care at the individual level and to social policies that
would improve the quality of life of dying people and their families
(Pew Research Center, 2009, 2013; Walling et al., 2008).
WHEN CHILDREN DIE

2003 Recommendation 1: Pediatric professionals, children’s hospitals,
hospices, home health agencies, professional societies, family advocacy
groups, government agencies, and others should work together to develop
and implement clinical practice guidelines and institutional protocols and
procedures for palliative, end-of-life, and bereavement care that meet the
needs of children and families.
• NHPCO developed Standards of Practice for Pediatric Palliative

Care and Hospice (NHPCO, 2009), which identifies four diagnos-
tic categories of patients who should be offered palliative care and/
or hospice services. They are children with
– “life-threatening conditions for which curative treatment may
be feasible but can fail, where access to palliative care services
may be beneficial alongside attempts at life-prolonging treat-
ment and/or if treatment fails;
– conditions where early death is inevitable and there may be
long periods of intensive treatment aimed at prolonging life,
allowing participation in normal activities, and maintaining
quality of life (e.g., life-limiting conditions);
– progressive conditions without curative treatment options,
where treatment is exclusively palliative after diagnosis and
may extend over many years; and
– irreversible but nonprogressive conditions entailing complex
health care needs leading to complications and the likelihood
of premature death” (NHPCO, 2009, pp. 5-6).
• Children’s Hospice International issued the Children’s Program of
All-Inclusive Coordinated Care for Children and Their Families
(ChiPACC) Standards of Care and Practice Guidelines in Septem-
ber 2005. It covers 16 care components, including access to care,
ethics, care teams, assessment processes, and bereavement services
(Children’s Hospice International, 2005).

APPENDIX B 423
• The Hastings Center Guidelines for Decisions on Life-Sustaining

Treatment and Care Near the End-of-Life, Second Edition, re-
leased in 2013, includes guidelines on decision making about life-
sustaining treatment for the continuum of pediatric populations,
including nonviable and viable neonates, young children, older
children, adolescents, and mature and emancipated minors (Hast-
ings Center, 2013).
• In its Report of the Children & Adolescents Task Force of the Ad
Hoc Committee on End-of-Life Issues, the American Psychological
Association (APA) published information about the role of psy-
chologists in providing psychosocial care and bereavement services
to children near the end of life and their families. The report also
covers issues related to research, education and training, and policy
with respect to care for this population (APA, 2005).
• In 2010, the Association of Pediatric Hematology/Oncology
Nurses, in partnership with the Children’s Oncology Group Nurs-
ing Discipline, published Pediatric Oncology Palliative and End-
of-life Care Resource, which provides information about palliative
care to nurses caring for critically and terminally ill children with
cancer (Ethier et al., 2010). It contains information on pain and
symptom management, management of psychosocial issues, be-
reavement and grief, and other topics.
• The National Cancer Institute, through its Physician Data Query
(PDQ®) database, has developed summaries on pediatric support-
ive care for both patients (NCI, 2013) and health professionals
(NCI, 2014).
• From 2005 to 2010, Hospice of Michigan implemented its Pedi-
atric Early Care (PEC) program, which is for families of children
from birth to 21. PEC assists patients and families from the time of
diagnosis, providing support in palliative care education; grief and
loss; sibling support; memory-making activities; patient advocacy;
insurance assistance; community resource access; and integration
with service providers, medical staff, and those at other social and
community locations, including schools, workplaces, and places of
worship (Hospice of Michigan, undated).
• While not specific to pediatric populations, NQF put forth pre-
ferred practices for end-of-life care and bereavement care for all
patients with serious and complex illness and their families (NQF,
2006).
• A number of children’s hospitals, including St. Jude Children’s Re-
search Hospital and Boston Children’s Hospital, have implemented
institution-specific guidelines and procedures relating to the initia-
tion of palliative care (Baker et al., 2008).

2003 Recommendation 2: Children’s hospitals, hospices, home health agen-

cies, and other organizations that care for seriously ill or injured children
should collaborate to assign specific responsibilities for implementing clini-
cal and administrative protocols and procedures for palliative, end-of-life,
and bereavement care. In addition to supporting competent clinical services,
protocols should promote the coordination and continuity of care and the
timely flow of information among caregivers and within and among care
sites including hospitals, family homes, residential care facilities, and injury
scenes.
• In April 2006, Massachusetts’ health care reform legislation re-

sulted in the establishment of the statewide Pediatric Palliative Care
Network (PPCN) program, administered by the Massachusetts
Department of Public Health (Massachusetts Department of Pub-
lic Health, 2014). In 2010, PPCN involved 11 hospice programs
that provided services to 227 children with life-limiting illnesses.
A 2011 assessment of the program found that implementing this
model successfully is “highly feasible at relatively low cost” (Bona
et al., 2011, p. 1217). In contrast with public benefit programs,
such as Medicaid and CHIP, eligibility is not based on a family’s
income level, insurance type, or insured status. There is no life
expectancy requirement for participation in the program, which
provides services for pain and symptom management; case manage-
ment; counseling and psychosocial support; respite care; comple-
mentary therapies; spiritual care; and bereavement services for
family, caregivers, siblings, and others.
• NHPCO has developed a number of tools to support hospice and
palliative medicine health care teams, although these resources do
not include content specific to pediatric populations (NHPCO,
undated-c). Topics include
– interdisciplinary team competency;
– cultural competency in grief and loss;
– delivering bad news: helpful guidance that also helps the pa-
tient; and
– talking about treatment options and palliative care.
2003 Recommendation 3: Children’s hospitals, hospices with established

pediatric programs, and other institutions that care for children with fatal
or potentially fatal medical conditions should work with professional soci-
eties, state agencies, and other organizations to develop regional informa-
tion programs and other resources to assist clinicians and families in local
and outlying communities and rural areas.

APPENDIX B 425
• In 2007, NHPCO conducted its second member Survey on Pe-

diatric Services, receiving 378 responses. Overall, 78 percent of
responding hospices reported that they served pediatric patients,
and 37 percent had a formal pediatric program in place. Of those
without a dedicated pediatric team, 22 percent had specialized staff
providing only pediatric services (Friebert, 2009).
• Two of the Center to Advance Palliative Care’s (CAPC’s) eight
Palliative Care Leadership Centers (PCLCs) are based in children’s
hospitals and provide health professionals with close, hands-on
experiences, as well as a 12-month mentoring follow-up to guide
them through the challenges of program growth and sustainability.
The PCLC pediatrics training is relevant to pediatric palliative care
programs at every stage of development, whether involving teams
from children’s hospitals or pediatric programs within a general
hospital, and tailored to the specific operational needs of each
program (CAPC, 2014).
• Pilot programs and local/regional palliative care networks have
been established in some rural communities.
– The Rural Palliative Care Network at Vermont Children’s Hos-
pital expands Fletcher Allen Health Care’s Palliative Medicine
Service and allows the hospital’s clinicians to share their pallia-
tive care expertise with the region’s clinicians and community
hospital staff. The network’s services include telemedicine con-
sultations, a palliative medicine hotline, a palliative medicine
mentorship program, site visits, and weekly case conferences
(Fletcher Allen Health Care, 2014).
– The Massachusetts PPCN, mentioned above, is a statewide
program with the participation of hospice and palliative care
programs in metropolitan and rural areas (Bona et al., 2011;
Massachusetts Department of Public Health, 2014).
2003 Recommendation 4: Children’s hospitals, hospices, and other institu-

tions that care for seriously ill or injured children should work with physi-
cians, parents, child patients, psychologists, and other relevant experts to
create policies and procedures for involving children in discussions and
decisions about their medical condition and its treatment. These policies
and procedures—and their application—should be sensitive to children’s
intellectual and emotional maturity and preferences and to families’ cultural
backgrounds and values.
• One of the preferred practices outlined in NQF’s A National

Framework and Preferred Practices for Palliative and Hospice
Care Quality is “Decisionmaking of Minors,” which states: “For

minors with decisionmaking capacity, document the child’s views

and preferences for medical care, including asset for treatment,
and give them appropriate weight in decisionmaking. Make ap-
propriate staff members available to both the child and the adult
decisionmaker for consultation and intervention when the child’s
wishes differ from those of the adult decisionmaker” (NQF, 2006,
p. 45)
• Advance directive documents specifically geared to pediatric pa-
tients have been developed. For example, the creators of the Five
Wishes living will (18 million of which are in circulation in the
United States) have developed My Wishes, “a booklet written in
everyday language that helps children express how they want to
be cared for in case they become seriously ill,” and Voicing My
Choices: A Planning Guide for Adolescents & Young Adults, which
“helps young people living with a serious illness to communicate
their preferences to friends, family and caregivers” (Aging with
Dignity, 2014; Lyon et al., 2013; Wiener et al., 2008, 2012).
• One recent study found that the implementation of advance di-
rectives for pediatric patients entails several particular barriers.
For example, emergency department personnel are uncomfortable
honoring them, schools may not accept them, and parents seeking
to honor their children’s wishes encounter negative reactions from
others (Lotz et al., 2013).
2003 Recommendation 5: Children’s hospitals and other hospitals that care

for children who die should work with hospices and other relevant com-
munity organizations to develop and implement protocols and procedures
[around bereavement services].
• A 2011 study found that 24 of 28 surveyed pediatric palliative care

programs (86 percent) reported having a staff chaplain on their
clinical team, although their roles varied widely (Fitchett et al.,
2011).
• While not specific to pediatric populations, NQF recommends that
all palliative care and hospice models include bereavement support
for at least 13 months after the patient’s death. This framework
suggests preferred practices for the development and implementa-
tion of grief and bereavement care plans (NQF, 2006).
2003 Recommendation 6: Public and private insurers should restructure

hospice benefits for children to (a) add hospice care to the services required
by Congress in Medicaid and other public insurance programs for children
and to the services covered for children under private health plans; (b)

APPENDIX B 427
eliminate eligibility restrictions related to life expectancy, substitute criteria

based on a child’s diagnosis and severity of illness, and drop rules requiring
children to forgo curative or life-prolonging care (possibly in a case man-
agement framework); and (c) include outlier payments for exceptionally
costly hospice patients. (See bullets under Recommendation 7.)
2003 Recommendation 7: In addition to modifying hospice benefits, Medic-

aid and private insurers should modify policies restricting benefits for other
palliative services related to a child’s life-threatening medical condition.
• As noted earlier, the ACA removed the prohibition on receiving

concurrent treatment (hospice and curative services) for children
under Medicaid and CHIP. Children may be enrolled simultane-
ously in programs that provide supplemental services not covered
by Medicaid and CHIP, such as specialized home health care, case
management, respite care, and family support services (NHPCO,
2010).13
• A number of states have obtained waivers from CMS rules to
establish or augment pediatric palliative services. In 2005, Florida
became the first state to use a managed care waiver program to of-
fer concurrent hospice and curative treatment for qualified children
(Florida Agency for Health Care Administration, 2009, 2013).
California, Colorado, and North Dakota use supplemental services
waivers; New York and North Carolina use waivers for medically
fragile children. A different model has been developed in Washing-
ton State under its Early and Periodic Screening, Diagnosis, and
Treatment program (NHPCO, 2010, 2012b).
• State Medicaid programs must cover hospice services for children
even if they do not include hospice services for adults (CMS, 2010).
Remaining gaps:
• To qualify for concurrent care, the child must be within the last 6
months of life if the disease runs its normal course, as certified by
a physician (NHPCO, 2010).
• Under this benefit, children are limited to a state’s existing Medic-
aid hospice and other services (NHPCO, 2010).
2003 Recommendation 8: Federal and state Medicaid agencies, pediatric

organizations, and private insurers should cooperate to (1) define diagnosis
2d Sess. (January 5, 2010), § 2302 Concurrent Care for Children.

and, as appropriate, severity criteria for eligibility for expanded benefits for
palliative, hospice, and bereavement services; (2) examine the appropriate-
ness for reimbursing pediatric palliative and end-of-life care of diagnostic,
procedure, and other classification systems that were developed for reim-
bursement of adult services; and (3) develop guidance for practitioners and
administrative staff about accurate, consistent coding and documenting of
palliative, end-of-life, and bereavement services.
• As previously mentioned, NHPCO developed Standards of Practice

for Pediatric Palliative Care and Hospice (NHPCO, 2009), which
identifies four diagnostic categories of patients, listed above, who
should be offered palliative care and/or hospice services.
2003 Recommendation 9: Medical, nursing, and other health professions

schools or programs should collaborate with professional societies to im-
prove the care provided to seriously ill and injured children by creating and
testing curricula and experiences [for health care professionals].
• At Children’s Hospital Boston, physicians participated with nurses,

social workers, psychologists, and chaplains involved in pediatric
critical care in a day-long interprofessional communication pro-
gram, the Program to Enhance Relational and Communication
Skills, created by the Institute for Professionalism and Ethical Prac-
tice (Meyer et al., 2009).
2003 Recommendation 10: To provide instruction and experiences ap-

propriate for all health care professionals who care for children, experts in
general and specialty fields of pediatric health care and education should
collaborate with experts in adult and pediatric palliative care and education
to develop and implement [model curricula, residency program require-
ments, pediatric palliative care fellowships, introductory and advanced
continuing education programs, and strategies to evaluate techniques and
tools for educating health professionals in palliative care, end-of-life, and
bereavement care].
• EPEC-Pediatrics has 23 core and two elective topics, taught through

20 distance learning modules and six 1-day, in-person conference
sessions (EPEC, 2013). Since 2012, physicians and nurse practi-
tioners have participated in “Become an EPEC-Pediatrics Trainer”
workshops.14
14 Personal
communication, S. Friedrichsdorf, Children’s Hospitals and Clinics of Minnesota,
February 6, 2014.

APPENDIX B 429
• ELNEC developed an ELNEC-Pediatric Palliative Care curriculum

in 2003, updated in 2009 with content about perinatal and neona-
tal issues (AACN, 2014b).
• As noted earlier, in September 2006, the American Board of Medi-
cal Specialties approved the creation of hospice and palliative medi-
cine as a subspecialty of 10 participating boards, which include
pediatrics (American Academy of Hospice and Palliative Medicine,
undated-e). Between 2008 and 2012, 210 pediatricians became
board certified in hospice and palliative medicine, accounting for
3 percent of all board-certified physicians in this subspecialty (ABP,
2013).
• NBCHPN® administers the following hospice and palliative pe-
diatric nurse examinations accredited by the American Board of
Nursing Specialties through 2015:
– Advanced Certified Hospice and Palliative Nurse,
– Certified Hospice and Palliative Nurse,
– Certified Hospice and Palliative Licensed Nurse,
– Certified Hospice and Palliative Nursing Assistant,
– Certified Hospice and Palliative Care Administrator,
– Nurse Certified in Perinatal Loss Care, and
– Certified Hospice and Palliative Pediatric Nurse (NBCHPN®,
2014).
• The Accreditation Council for Graduate Medical Education re-
quires that pediatric training programs include formal instruction
related to the “impact of chronic diseases, terminal conditions, and
death on patients and their families” (ACGME, undated).
• Other curricula and education programs have been developed by
organizations including the following:
– Children’s International Project on Palliative/Hospice Services
(ChiPPS)—developed a core curriculum for varied populations
of health professionals that can be used to design, develop,
and implement individualized education and training programs
(NHPCO, undated-d).
– Initiative for Pediatric Palliative Care (IPPC)—developed cur-
riculum materials and conducted educational retreats through-
out the United States and Canada for interdisciplinary teams,
including clinicians from pediatric and neonatal intensive care
units and parents of children with life-threatening conditions
(Solomon et al., 2010).

Remaining gap:
• There is still a clear need for additional pediatric palliative care
preparation during residency training. While no formal, standard-
ized training of medical students and residents currently exists, a
few programs and institutions are piloting or implementing such
programs (Carter and Swan, 2012; Schiffman et al., 2008).
2003 Recommendation 11: The National Center for Health Statistics, the
National Institutes of Health, and other relevant public and private or-
ganizations, including philanthropic organizations, should collaborate to
improve the collection of descriptive data—epidemiological, clinical, orga-
nizational, and financial—to guide the provision, funding, and evaluation
of palliative, end-of-life, and bereavement care for children and families.
• In 2009, NHPCO published NHPCO Facts and Figures: Pediatric

Palliative and Hospice Care in America, which compiles data from
various articles and reports (Friebert, 2009).
• NHPCO has been collecting data using the voluntary National
Data Set (NDS) since 1999. The NDS provides a platform for data-
driven evaluation of the performance of the hospice industry. While
this tool is not specific to pediatric populations, it does collect
information relevant to hospices that serve pediatric populations
either exclusively or alongside adult hospice patients. NHPCO
has added an annual national Palliative Care Supplement to the
NDS (NHPCO, 2013). In 2007, NHPCO conducted a Survey on
Pediatric Services and received 378 responses from member hospice
providers offering information about their pediatric patient popu-
lation and services (Friebert, 2009).
2003 Recommendation 12: Units of the National Institutes of Health and

other organizations that fund pediatric oncology, neonatal, and similar
clinical and research centers or networks should define priorities for re-
search in pediatric palliative, end-of-life, and bereavement care. Research
should focus on infants, children, adolescents, and their families, including
siblings, and should cover care from the time of diagnosis through death
and bereavement. Priorities for research include but are not limited to the
effectiveness of (a) clinical interventions, including symptom management;
(b) methods for improving communication and decision making; (c) in-
novative arrangements for delivering, coordinating, and evaluating care,
including interdisciplinary care teams and quality improvement strategies;
and (d) different approaches to bereavement care.

APPENDIX B 431
• Recent NIH grant programs supporting research on pediatric end-

of-life care include
– Advancing Palliative Care Research for Children Facing Life-
Limiting Conditions, a $1.25 million NINR-sponsored pro-
gram supporting biobehavioral research aimed at improving
quality of life, including bereavement support, for children
(NIH, 2010); and
– Improving Care for Dying Children and Their Families (2004-
2007), a program under the auspices of several institutes de-
signed to support research that will improve the quality of life
for children who are approaching the end of life; the quality of
the dying process; and bereavement following the child’s death
among family members, friends, and care providers (NIH,
2004).
• NINR’s Palliative Care: Conversations Matter® campaign focuses
on improving communication about pediatric palliative care among
patients, families, and health care providers (NINR, 2013b).
• NPCRC funds grants in the following areas of interest: pain and
symptom management, communication, and models of health care
delivery (NPCRC, undated-a). It offers funds through four differ-
ent funding mechanisms: pilot and exploratory project support
grants, junior faculty career development awards, infrastructure
support for collaborative study, and research design/statistical sup-
port grants (NPCRC, undated-b).
– Funding to date has supported projects aimed at elucidat-
ing, among other topics, communication and decision making,
symptom burden, and quality of life among pediatric patient
populations (NPCRC, 2010).
– In 2013, NPCRC established the Lord Pediatric Palliative Care
Career Development Awards with the support of the Lord
Foundation (NPCRC, 2013).
Remaining gaps:
• The NINR-published review Building Momentum: The Science
of End-of-Life and Palliative Care: A Review of Research Trends
and Funding, 1997-2010 reports that research involving pediatric
populations increased between 1997 and 2010, but still accounted
for a small proportion (less than 10 percent) of all end-of-life and
palliative care research publications (NINR, 2013a).
– Research among solely children (defined as newborn to age 17)
increased from 2.5 percent in 2003 to 6.3 percent in 2010.

– Research among combined populations of children and adults

increased from 3.4 percent in 2003 to 5.4 percent in 2010.
• The present report identifies the need for further research among
pediatric populations in a number of topic areas, including
– approaches to symptom management and bereavement support;
– the impact of palliative care on clinical outcomes and patient
and family experience;
– involvement of children in end-of-life decision making, ap-
proaches to decision support and communication, and the
development of guidelines for pediatric and adolescent advance
care planning;
– care received in various settings, including outpatient settings,
hospices, and emergency departments and through home
health agencies; and
– staffing, management, and financing of hospital-based pediatric
palliative care and community-based pediatric hospice services.
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Appendix C
Summary of Written Public Testimony
The committee solicited written testimony about care for individuals

who are likely approaching death. In addition to testimony provided at the
committee’s public meetings (see Appendix A), comments were received
through an online survey1 (see Box C-1). The committee asked for thoughts,
stories, and comments from individuals who have a serious and progres-
sive illness or condition and their families, caregivers, and care providers,
as well as others who are interested in end-of-life care. The committee was
particularly interested in testimony about barriers to care, opportunities for
improving care, patient and family experiences with care, and experiences
of health care providers. The committee received 578 responses. These
comments, along with the in-person testimony described in Appendix A,
provided rich context for the committee’s work. This appendix provides
highlights and a brief summary of the experiences and opinions of those
who provided this testimony. Box C-1 provides an overview of the survey
used to solicit this testimony.
Responses were received from a wide range of individuals. Caregiv-
ers who provided compelling testimony included husbands, wives, sisters,
brothers, sons, daughters, nieces, godchildren, parents, cousins, in-laws,
friends, and neighbors. The majority of those cared for were elderly, but
1
Respondents were informed that the Institute of Medicine would not record identifying
information such as individuals’ names, email addresses, or IP addresses. Only aggregated
responses without personally identifying information were presented to the committee and
placed in the public access file for this project. Respondents were also told that their responses
might be referenced or quoted in this report.
443

BOX C-1
Survey Overview and Testimony Questions
The Institute of Medicine is undertaking a project that will examine care for
individuals approaching death. The committee will assess the delivery of health
care, social, and other supports to both the person approaching death and the
family; person-family-provider communication of values, preferences, and beliefs;
advance care planning; health care costs, financing, and reimbursement; and
education of health professionals, patients, families, employers, and the public
at large.
You may submit comments in any or all of the following areas.
Experiences Receiving Care
Question 1: If you are an individual living with a serious progressive illness

or condition, or a loved one of an individual please describe your experiences
receiving care. Your stories may include how you have talked with health care
providers, your family, and friends; how you have discussed and reviewed your
spiritual or religious needs, your finances, or any other issues. Your stories may
also include what you liked and did not like about communication with your pro-
viders and others who gave you support, treatment approaches, or any other
aspects of care.
Question 2: If you are a family member or friend of an individual who has
died, what care or supports did you need and/or receive while your family member
or friend was in the advanced stages of their condition. What care or supports
did you need and/or receive after they died? What care or support did you NOT
receive and wish you had received during the illness, at the time of death, or
afterwards.
many were in midlife, and some were adolescents and young adults. Some
individuals who were themselves living with serious illness and/or likely
approaching death also provided their own perspectives. The illnesses and
conditions described included Alzheimer’s disease, various types of cancer,
heart failure, dementia, kidney failure, liver failure, Parkinson’s disease,
AIDS, and bone fractures.
An array of health care professionals also provided compelling testi-
mony. Many wrote about their experiences both as professionals and as
caregivers for loved ones. Testimony was received from ethicists, social
workers, chaplains, priests, pastors, and health care administrators, as well
as dieticians, oncologists, nephrologists, nurses, cardiologists, neurologists,
pediatricians, psychologists, and intensive care unit (ICU) physicians. Many

APPENDIX C 445
Experiences Providing Care
Question 3: If you are a health care professional, please tell us about your
experiences in providing care to individuals with a serious progressive illness or
condition and their families. What are the problems, opportunities, challenges, and
successes you encounter? Does the term “end of life” impact the willingness of the
individuals you work with to engage in the provision of care or the willingness to
receive it? Please indicate what type of professional you are (discipline/specialty).
Barriers to Care
Question 4: What do you see as the biggest barriers to care (for individu-
als with serious progressive illness or condition) that is appropriate and easy to
access?
Improving Care
Question 5: What three changes in the U.S. health care system could im-
prove care of individuals with serious progressive illness?
Additional Comments
Question 6: If you have additional thoughts about improving research, care,

and education for or about individuals with a serious illness or medical condition
who are likely approaching death, or if you would like to share information related
to the committee’s work, please use the space provided below to do so. You may
also email documents or articles to support your testimony to [email protected].
of these professionals experienced similar challenges and frustrations, in

their roles as both caregivers and health care professionals.
PERCEPTIONS OF DEATH
Many respondents, including caregivers and health care professionals,
commented on the ways in which the topic of death is perceived by some
health professions and among some patients and families. The perceptions
were predominantly ones of fear. One caregiver commented, “Americans
don’t see death as a part of life.” Another added that we are “too afraid to
talk about death.” Health care professionals also commented about such
fears among some of the patients and families they cared for but also among

their colleagues. One said, “Physicians are not comfortable discussing EOL
[end-of-life] choices.”
Health care providers and nonproviders alike commented on the bar-
rier presented by the “healing culture” of medicine and the belief by pro-
viders that death means failure. Said a critical care physician, “One of the
biggest challenges I face in taking care of patients with advanced progres-
sive illness is the unwillingness of some (not all, probably not even many)
to face death and accept it as a part of life just like birth, marriage, etc. We
are plagued by a complete lack of understanding and acceptance that we
are going to die—our entire medical system is oriented to staving off death.
As a clinician, I often feel a failure when someone dies under my care, even
though in retrospect (and in the now) the course was laid out long ago by
the disease process. Opportunities lie in educating the populace as a whole
about death and its inevitability.”
Respondents also commented on perceptions of death within Ameri-
can culture. For example, one person remarked, “people in our culture are
terrified of death and dying. It has been institutionalized and privatized
to the point people are terrified of one of the few experiences we all have
in common.” A provider, a chaplain, commented on the reasons for these
perceptions by saying that “the politicization of discussion of end-of-life
care (death panels associating the discussion of end-of-life choice with
euthanasia) has definitely had an impact on public perception of these is-
sues.” Caregivers and providers alike noted that a fear of death and dying
is reflected in legal and legislative systems. Said a caregiver who cared for
a dying spouse, “The matter of choice in the time and place of dying is a
personal one, and the political and legal system should have NOTHING to
say in the matter.” A palliative care nurse practitioner noted, “Politicians
are afraid to discuss end of life care for fear of hearing the words ‘rationing’
or ‘death panels.’” An emergency medicine physician, who is currently car-
ing for a family member, stated, “I think many physicians fear being sued
because the most advanced treatment is not implemented.”
“Like most Americans I never thought of death or end-of-life issues
until I was forced to. I had no idea how unprepared I was emotionally,
mentally, financially, and spiritually to face my grandmother and mother’s
terminal illnesses,” wrote another caregiver.
COMMUNICATION
Importance of Conversation
An important theme that emerged from the testimony was the impor-
tance of clear and honest communication between providers and patients
and their families. Many stories relayed the impact of not having sufficient

APPENDIX C 447
information, not understanding choices, and not feeling heard. For ex-
ample, one caregiver said, “But, perhaps medical professionals could try to
explain earlier and more clearly what is really going on. It’s dizzying, con-
fusing, and emotionally difficult to navigate the medical establishment and
to almost literally translate what they are telling patients and families.” One
respondent with a serious illness described his/her perception that providers
were not willing to talk about what will happen. Another wrote, “I have
not seen lack of willingness to provide great end of life care, but rather the
failure to point out that the end of life is approaching.” Another important
issue raised by one caregiver was the problem of ageism and stereotyping of
the elderly and its effect on care, including the “tendency of medical provid-
ers to talk with loved ones rather than respecting the patient and keeping
the patient at the center of the conversation.”
However, there were also stories that relayed the impact of positive
communication. A caregiver wrote: “When my dad passed just a few years
ago, I was most grateful for medical personnel who took the time to listen
sympathetically to my anxieties, fears, and questions. My most troubling
question was, ‘Am I doing enough? Am I doing the right thing?’ They
kindly offered options for care and counseled me as to what seemed reason-
able, given his deteriorating condition.”
Many health care providers of all types acknowledged that there is
fear and reluctance to provide honest and clear information, and that
professionals need to talk more openly about options near the end of life.
A provider noted, “Most patients and families are not afraid of having an
honest discussion about serious illnesses or ‘end of life’ if it’s done well and
professionally.”
There were several comments by providers about the terminology used
by providers when talking with patients and families. Some believed that
the term “end of life” should not be used. One person stated that it was
not compatible with the medical profession’s philosophy of saving lives.
Another commented that the term was important to use because it is un-
ambiguous and helps patients and families hear the truth. Other providers
suggested that terms such as “serious illness” and “end-stage illness” were
more appropriate to use.
With regard to suggestions for improving communication, one care-
giver simply stated, “Ask patients what they want.” Many others, including
patients themselves, indicated that just having conversations was important.
Said one caregiver, “What I appreciate most is honesty, accurate informa-
tion, and empathy from health care providers.”

Advance Care Planning and Advance Directives

Another facet of communication reflected in the testimony was the use
and honoring of advance directives. Some caregivers relayed stories of how
care preferences were not assessed, and advance directives were not hon-
ored. Said one: “My mother has multiple sclerosis and is receiving excellent
care from one of the top medical centers for MS [multiple sclerosis] in the
nation. Despite the level of medical treatment, not one person has ever
discussed her goals for treatment, her values and preferences, or what she
would want doctors to do if something happened to her and she couldn’t
communicate.” Another caregiver described the following situation: “My
aunt had a DNR [do not resuscitate] on file when she was in the skilled
nursing facility following a fall and fractured hip. She was moved to a new
room the day after she got there and that evening was dying of aspiration.
They tried to resuscitate her for ONE HOUR before giving up and thank-
fully, she was released from this torture and died. She was 90 years old.
The reason they did this was that they had failed to move her DNR from
one room to another, and yet, they somehow managed to move her azalea
plant that I brought to her that day to her new room. Words cannot express
how heartbreaking and infuriating this is to me.”
Other caregivers submitted comments expressing frustration about the
inability to have conversations about advance directives. A caregiver stated,
“Not sure how to get doctors to talk about advance directives, i.e., MOLST
[Medical Orders for Life-Sustaining Treatment]. My dad’s doctor signed
it—no discussion, etc., and told me (I’m a nurse) to go over the information
and fill it out with my dad.”
Some caregivers commented that people need not only to have di-
rectives, but also the cooperation of family and providers. Many stories
revealed the emotional impact that resulted when family members and
physicians disagreed with the stated wishes of a patient. Among those liv-
ing with serious illness, comments on this topic conveyed the importance
of having advance directives, and it was suggested that digital advance di-
rectives be made standard practice to help ensure that they will be known
and honored.
PROVISION OF CARE:
DELIVERY, QUALITY, COORDINATION, AND TIMING
Individuals living with serious illness, caregivers, providers, and others
wrote many compelling stories about how care was received and provided.
Testimony revealed challenges with the coordination and continuity of care
and with receiving the care individuals wanted (including limited interven-
tions) when they wanted it.

APPENDIX C 449
One issue raised frequently by caregivers was a feeling that too many
procedures and unnecessary surgeries occurred in the care of their loved
one. A wife wrote, “When my late husband was battling a brain tumor
in the last months of his life, the doctors wanted him to undergo another
surgery. We knew enough to ask: what will this add to my quality of life
and life span? The answer was: ‘well, the surgery, as you know is difficult,
but it can add a few weeks to your life.’” Another caregiver commented
that more treatment may be too much for some, but helpful to others: “I
have seen many patients get chemotherapy treatment long after they have
lost their quality of life and think that a little honesty may have given them
more quality in the time they had left. I have also seen many patients live a
high quality of life while receiving chemotherapy, which I think should be a
determining factor when deciding treatment options.” A person living with
a serious and chronic condition commented: “I have made it clear that I
will be fighting until the end. I have said so through my advance directive.”
Other concerns expressed by caregivers included the fragmentation of
care and lack of care coordination. These problems were also reported by
providers. One provider, a primary care internist, said, “Tear down the bar-
riers between acute hospital, home, nursing home, assisted living, hospice.
Transitions among these are not easy, and any one doctor has a great deal
of trouble navigating and coordinating them all.” Another person said
regarding the care of his/her father: “The doctors that I have encountered
in his care don’t want to talk about palliative care, advance directives, and
any kind of general plan of care for him. Each specialist works in a silo,
rather than a collaboration of care. We will bring tests results with us, so
that one physician is aware of what others are doing.”
Another major concern expressed by respondents related to the ad-
equacy of pain relief in individuals with serious illness. A provider believed
that there was too much fear of addiction to pain medication, which pre-
vents adequate pain control in patients. Still another provider reported that
there was fear of hastening death by providing adequate pain relief.
Many caregivers relayed wonderfully positive experiences with hos-
pice and palliative care, which benefited both the patient and family. One
husband wrote: “The most important help we got was from hospice. They
provided pain control, help for me as a care giver, unstinting nursing care
for my wife, and the option of palliative sedation if she needed it. After
she died they provided the grief support I so desperately needed.” Other
caregivers noted that while their experience with hospice was good overall,
there were challenges, such as the level and timeliness of assistance and
assistance provided when a regular nurse is off duty, as well as obtaining
adequate pain control. Once caregiver wrote: “My mother died 3 years ago
in the aftermath of a heart attack. She fortunately received hospice care in
an excellent hospital setting. The disturbing thing about her last hours was

that the hospital nurses would not administer enough pain medication to
moderate her suffering. The hospice nurses checked in on her only once a
day—we had been assured that she would be kept ‘completely comfortable’
but that was not the case, since the hospital staff insisted they did not want
to medicate her to a level of unresponsiveness.” There were additional com-
ments about hospice being a misunderstood service. For example, one pro-
vider said: “One of the biggest barriers to care regarding hospice services
is the misunderstanding of patients that if you sign up for hospice you are
giving up on living. The misconstrued notion that everyone has given up
hope if you sign up for hospice. This could not be further from the truth.”
While there were reports from providers that palliative care has become
increasingly medicalized and less holistic, many providers and caregivers
expressed that it was a very helpful service, one that was not offered soon
enough.
Other topics mentioned as barriers to care included difficulty finding
care for those with behavioral issues, the use of technology that makes the
end of life more difficult to determine, and a lack of training about dis-
ability culture and lifestyle. In addition, policies and procedures were men-
tioned as preventing patient-centered care. One patient remarked, “Policies
and procedures take center stage and the patient is a ‘bit player’ in the
drama that unfolds.” There were also numerous comments that expressed
support for or opposition to physician aid in dying.
A wide range of respondents offered suggestions for reducing barriers
to good care. Providers called for increased coordination of care, more
patient-centered care, earlier access to hospice (including an extension of
the benefit to a 1-year prognosis rather than 6 months) and palliative care,
and better access to home care.
Like providers, caregivers suggested that better coordination of care
should be provided, even mandated, and that hospice should be offered
early. Other suggestions from caregivers and those living with serious ill-
ness related to social supports and assistance in coping, such as the need for
skilled advocates, social workers, better grief support, respite care, home
visits, and pain control. Some stories relayed the extent of depression in
loved ones who were dying and some who died by suicide. Some caregiv-
ers stated that more attention should be paid to the mental and cognitive
health of people during the course of their illness. In addition, a multitude
of stories spoke to the benefit and necessity of spiritual care. One person,
the adult child of a dying man, wrote that the chaplain was able to explore
some of his/her father’s questions that he did not want to discuss with his
children. Another respondent commented, “I needed a chaplain’s care, and
did not receive it, while she was dying, and afterwards. I get support from
the congregation of which I am a part, but that is different, more diffuse
care. I wanted to be able to talk about my friend, the courageous decision

APPENDIX C 451
she made, the quality of her dying, and how my world changed with her
death.”
NEED FOR EDUCATION

Many of the topics raised in the sections above led to suggestions for
education—for patients, family, providers, and the public at large. Testi-
mony included ideas for ways to help change perceptions of death. A num-
ber of respondents suggested that public education initiatives are needed,
such as television commercials to help normalize discussions of death and
dying. One respondent recommended that providers work with producers
in Hollywood to paint a more realistic picture of illness, codes, and other
events surrounding the end of life.
To help patients and families, the use of technology was encouraged.
One provider suggested that “improving the availability of communica-
tion with a cell phone, texting system that insures 24-hour care would be
a great improvement. Access to videos online to discuss some of the issues
related to terminal care, medications used by families to comfort patients,
discussions to have with the patient to comfort and encourage, and a host
of other needed information topics would be very helpful.” Other provid-
ers thought that patients and families should receive more education on the
benefits of hospice and palliative care. Interestingly, many caregivers (and
some providers) made the same recommendation for providers.
Additional suggestions were made regarding education for providers.
These suggestions included formal curriculum requirements on or exposure
to end-of-life care, humanities requirements for medical students, and train-
ing in effective communication. Training was also recommended for direct
care workers and religious leaders.
COST OF CARE AND REIMBURSEMENT POLICIES

The cost of care was a serious concern expressed by caregivers. One
commented, “Individuals with long term illness should not impoverish their
families through medical costs. We need SERIOUS change to funding.”
Another caregiver remarked that “the emotional cost is great, the financial
cost is astronomical.”
Providers expressed frustration that the fee-for service model poses a
problem for providing care for the ill and those near the end of life, that
Medicare regulations drive care, and that there are financial incentives to
treat patients aggressively. One provider commented, “I wish doctors were
given more support to be there.” A nurse wrote, after reflecting on the death
of a loved one, “We must look at restructure of reimbursement, so provid-

ers have incentives to spend the time that is needed, rather than getting paid
fee for services and losing sight of what is most important.”
Health care professionals recommended many changes in reimburse-
ment policies. Providers suggested payment for communication about treat-
ment choices and goals of care, increased coverage for palliative care and
hospice, and funding for coordination of care and other ancillary services
(such as nursing time to address symptoms, health care navigators). Some
providers also thought that compensation should be provided for transi-
tional care. One palliative care nurse wrote about the need for “financial
incentives that focus on quality of life, symptom management and caregiver
burdens.” Caregivers noted that they experienced challenges when deal-
ing with insurance companies. One respondent stated, “The challenges
come with insurance companies and what they think is necessary or not
necessary. The insurance companies may take their time to respond to our
requests and frequently need more documentation. Their rules may change
and what was acceptable 1 month may need clarification for the prescrip-
tion to be filled by the pharmacy.” Caregivers also called for an easier
process for filing claims and reimbursement for home health palliative care,
and supported payment for discussions with providers about goals of care.
STRESS ON CAREGIVERS
Caregivers expressed a range of additional concerns that reflect is-
sues related to stress on caregivers and other barriers to care. There were
numerous reflections on the emotional and logistical difficulties faced by
caregivers. One noted, “Caregivers are the backbone of care for this popu-
lation. We are unpaid and under tremendous emotional distress.” Another
commented, “Health care providers ought to take the time to consider the
spouse or caregiver of a disabled or elderly person who is brought to them
for treatment. Sometimes, the ‘bringer’ may be the person who needs the
most care.” One caregiver mentioned the difficulties posed by sibling in-
eligibility for the Family and Medical Leave Act. In describing caring for a
sick spouse, one respondent wrote, “There are days when it’s hard for me
not to laugh when well-meaning people advise me to take care of myself. .
. . My husband’s illness is my illness. I belong to a caregivers group, which
is supportive. People who are not caregivers do not understand the continu-
ous burden of the role and seem to think it can be walked away from or
put aside forever or for a while. Not so. The stress feels as if I’m constantly
holding my breath.”
Respondents also reported difficulties related to transportation and
hospital parking. One provider wrote, “Issues my patients have, who is
going to do the food shopping, how is my spouse going to cope, how does
my spouse get a respite from caring for me.” Many caregivers described

APPENDIX C 453
the amount and types and difficulty of care they were required to offer. A
chaplain who is also a caregiver for a spouse wrote about his/her experi-
ence: “The biggest shock for me has been how much our current system
requires the patient in this situation to have a relative looking out for them.
Some people are alone.” Another caregiver, reflecting on caring for his/her
father during the end of his life, wrote, “His disease progressed rapidly
and we were struggling with his daily care. We did hire a nurse for the last
days of our father’s life as my sister and I felt unable to carry out some of
the medical procedures that we felt required more skill than we were able
to handle (catheterization). I am astounded that it would be expected of
any caregiver, especially an elderly spouse.” Describing the burden seen on
families caring for loved ones, one provider wrote, “The idea that families
are often forced to make great personal and financial sacrifices to do what
is best for their loved one is inexcusable for a country such as ours.”
While many caregivers and loved ones remarked that they received
support during their grief and bereavement from health care providers,
hospice companies, loved ones, and faith communities, others noted that
these services and supports were inadequate or nonexistent. Reflecting on
the passing of her mother-in-law, one respondent wrote, “Following her
death, other than mailed pamphlets we received no bereavement care. My
husband and sister-in-law, in particular, could have used this after losing
both parents in less than 2 years.” While most providers and caregivers
told of their experiences caring for adult parents, siblings, family members,
and friends, some described the experience of caring for or losing a child.
One respondent wrote, “I was transported to the emergency department
during a miscarriage, and once the team determined that my life was not
in danger from the blood loss, I was dismissed. There was no screening or
assessment or offer of support—no recognition that this ‘loss’ was poten-
tially traumatic—no moment of compassionate connection for what to me
was the loss of a child.”
Another respondent talked about the passing of a parent: “Afterwards,
I was so tired and often felt others did not appreciate the grief I expe-
rienced. Grief is a real issue that ultimately everyone if [they live] long
enough, will pass through.”
CONCLUSION
The committee is grateful to the hundreds of individuals who shared
their experiences and perspectives on care for individuals with serious ill-
ness and for those who are likely approaching death. Their responses shed
light on the challenges faced and on supports that helped ease burdens. The
following reflection from a caregiver perhaps summarizes some of the im-
portant messages from the many submissions received: “The success is that

for the most part, when you take the time to find out what’s most important
to patients and families, they make very reasonable choices. The challenge
is that our health care system does not encourage these conversations, our
professional providers frequently do not have the time or training, and
treatment measures default to those that are not patient-centered.”

Appendix D
Financing Care at the End of Life and

the Implications of Potential Reforms
Haiden A. Huskamp, Ph.D.1

David G. Stevenson, Ph.D.2
As with other health care services, the manner in which end-of-life care
is financed in the United States has a substantial impact on the care that is
delivered. In the following paper, we examine the implications of financ-
ing and payment methods for end-of-life care for utilization, quality, and
expenditures of individuals with advanced illness. After presenting context
about service utilization, expenditures, and insurance coverage at the end
of life, we highlight key limitations of current financing approaches, includ-
ing incentives for overutilization, fragmentation, and inattention to quality
of care. We discuss possible reforms to end-of-life care financing and the
potential trade-offs involved, paying particular attention to bundled pay-
ment approaches and targeted changes to eligibility and payment policies.
We conclude with broad guidance about factors to consider in advancing
public policy in this important area.
FINANCING CARE AT THE END OF LIFE AND THE

IMPLICATIONS OF POTENTIAL REFORMS
Introduction
As with other health care services, the manner in which end-of-life care
is financed in the United States has a substantial impact on the care that is
1
Department of Health Care Policy, Harvard Medical School, 180 Longwood Avenue,
Boston, MA 02115, [email protected], 617-432-0838.
2 Department of Health Policy, Vanderbilt University School of Medicine, 2525 West End
Avenue, Suite 1200, Nashville, TN 37203, [email protected], 615-322-2658.
455

delivered. Not only does coverage in public and private insurance programs
shape the services for which individuals are eligible, but also the interaction
between coverage and approaches to payment exerts a strong influence on
the intensity, setting, and quality of care that is provided. In this appendix,
we examine the implications of financing and payment of end-of-life care in
the United States and discuss potential reforms and their possible impacts.
We focus primarily on the Medicare program, given its prominent role in
paying for and shaping end-of-life care. We detail relevant research find-
ings where possible, while also identifying gaps in the knowledge base. We
conclude with broad guidance about factors to consider in advancing public
policy in this important area.
UTILIZATION AND EXPENDITURES FOR

INDIVIDUALS AT THE END OF LIFE
Approximately 2.5 million individuals die each year from a variety
of causes, including sudden acute illness, accident, suicide, homicide, and
long-term chronic conditions (Minino, 2013). Approximately three-quarters
(74 percent) of deaths occur among persons aged 65 and older (Minino,
2013). In contrast to nonelderly decedents, death among the elderly is most
likely to occur after a diagnosis of advanced chronic illness as opposed to
a sudden, unexpected death. Of all deaths in 2011 among persons aged
65 and older, 26 percent were due to heart disease, 22 percent to cancer,
7 percent to chronic lower respiratory diseases, 6 percent to stroke, and 5
percent to Alzheimer’s disease (Minino, 2013). For the one-quarter of all
deaths among the nonelderly, a much larger proportion is due to accidents,
homicide, suicide, or acute episodes of illness. For example, 38 percent of
all 2011 deaths among those aged 1-24, 26 percent among those aged 25-
44, and 7 percent among those aged 45-64 were due to accidents (Minino,
2013).
Services Used at the End of Life

Individuals suffering from advanced illness may use a variety of life-
prolonging and palliative services after their diagnosis. While the inpatient
share of Medicare expenditures for decedents aged 65 and older in a given
year has dropped dramatically over the past 30 years, inpatient care still
accounted for half of all Medicare spending—50.2 percent—among elderly
decedents in 2006 (see Table D-1) (Riley and Lubitz, 2010). Physician ser-
vices accounted for 18.8 percent, skilled nursing facility (SNF) care for 10.4
percent, hospice for 9.7 percent, other outpatient services for 6.8 percent,
and home health care for 4.1 percent (Riley and Lubitz, 2010). Although
inpatient spending as a proportion of total spending at the end of life has

APPENDIX D 457
TABLE D-1 Percent of Medicare Payments by Service Type for Medicare

Decedents Aged 65 and Older
Services 1978 2006
Inpatient Hospital 76.3 50.2
Physician and Other Medical 17.3 18.8
Outpatient 2.6 6.8
Hospice 0.0 9.7
Skilled Nursing Facility (SNF) 1.9 10.4
Home Health 1.8 4.1
SOURCE: Riley and Lubitz, 2010.
declined substantially along with an increased role for hospice care, it is im-
portant to note that many Medicare beneficiaries still have intensive service
use at the end of life (Barnato et al., 2004; Riley and Lubitz, 2010). In fact,
many Medicare beneficiaries access the hospice benefit only after spending
time in the hospital and the intensive care unit (ICU), and then do so only
for short periods of time (Teno et al., 2013).
Approximately one-quarter of Medicare spending is incurred by indi-
viduals in their last year of life, a proportion that has remained virtually
unchanged since the late 1970s (Riley and Lubitz, 2010). Focusing only on
Medicare expenditures provides a narrow picture of health care spending
at the end of life, particularly for nursing home residents, approximately
two-thirds of whom are dually eligible for Medicare and Medicaid and
receive Medicaid-financed long-term services and supports. While some
have pointed to the relatively large share of Medicare spending devoted to
care in the final year of life to support an argument that growth in health
care spending is driven largely by the increased use of high-cost aggressive
treatment for individuals near death, Scitovsky (1984) argued that changes
in technology and intensity of treatment had not disproportionately af-
fected utilization and spending for patients at the end of life relative to
other elderly Medicare patients who are ill, and thus that spending should
not be a disproportionate target of cost containment efforts. Lubitz also
concluded that Medicare beneficiaries in their final year of life did not ac-
count for a larger share of Medicare expenditures after the emergence of
new medical technologies, demonstrating that the dying were utilizing care
in ways similar to those of other patients (Lubitz and Riley, 1993). It is
also important to note that calculations of spending in the last year of life
can be made only by looking backward from the decedent’s date of death.
These calculations do not necessarily reflect “real-time” decision making by
patients and families about care in the final year of life, as 1-year survival
is extremely difficult to predict.

Elderly individuals with advanced illness and their families face consid-
erable financial risk from out-of-pocket health care expenditures in the final
years of life (Kelley et al., 2013b). Studying elderly Medicare beneficiaries
who died between 2002 and 2008, Kelley and colleagues found that average
out-of-pocket spending in the 5 years before death was $38,688 (in 2008
dollars). Expenditures were highly skewed, however, with a 90th percentile
of $89,106. For one-quarter of decedents, out-of-pocket expenditures ex-
ceeded the household’s baseline total assets. Reaffirming the importance of
including long-term services and supports in calculations of spending at the
end of life as mentioned above, nursing home costs accounted for half of
the expenses for those in the top quartile of spending (Kelley et al., 2013b).
Variation in Utilization and Spending at the End of Life

Although spending on end-of-life care is uniformly high, the Dartmouth
Atlas documented substantial geographic variation in use of end-of-life care
services and spending by hospital referral region (HRR) over time, which
researchers and policy makers viewed as evidence of wide regional differ-
ences in physician practice patterns (Goodman et al., 2011). For example,
in 2007, the average number of days spent in an ICU for chronically ill
Medicare beneficiaries in the last 6 months of life varied from 0.7 in Minot,
North Dakota, to 10.7 in Miami, Florida (Goodman et al., 2011). In this
same population, the percentage dying in a hospital varied from 12.0 per-
cent in Minot, North Dakota, to 45.8 percent in Manhattan, New York,
and the average number of days spent enrolled in hospice varied from a low
of 6.1 in Elmira, New York, to a high of 39.5 in Odgen, Utah (Goodman
et al., 2011).
A July 2013 report by the Institute of Medicine’s Committee on Geo-
graphic Variation in Health Care Spending sheds new light on the literature
on variations in health care spending and utilization at the end of life (IOM,
2013). First, the report documents large variation in health care spending
at all levels of geography studied, including HRRs; hospital service areas;
core-based statistical areas (CBSAs); physician practices; and even the level
of an individual physician after controlling for demographic characteristics,
insurance plan factors, and market-level characteristics. Importantly, the
variation in total Medicare spending was driven largely by the utilization
of post-acute services, including SNF services, home health care, hospice,
inpatient rehabilitation, and long-term acute care; if there were no variation
in post-acute care expenditures, then variation in total Medicare spending
would decrease by 73 percent (IOM, 2013). One potential implication of
these findings is that the integrated payment and bundled payment demon-
strations we describe below (e.g., where acute, post-acute, and other health
care services are more integrated in their financing and delivery) could have

APPENDIX D 459
greater relevance than simple geographic adjustments to administered pay-

ments alone in introducing efficiencies into the health care system.
WHO PAYS FOR CARE AT THE END OF LIFE?

As of 2011, the majority of the U.S. population (54 percent) had private
health insurance coverage either through an employer (49 percent) or an
individual/nongroup policy (5 percent) (KFF, 2011). Sixteen percent were
covered by the Medicaid program, 13 percent by Medicare, and 1 percent
by other public programs, with approximately 16 percent being uninsured
(KFF, 2011). Although the Patient Protection and Affordable Care Act
(ACA) will likely decrease the number of uninsured individuals and increase
the proportion who have Medicaid and private coverage beginning in Janu-
ary 2014, the Medicare program is—and will remain—the predominant
payer for end-of-life care in the United States, primarily because of the older
ages at which most Americans die. Moreover, Medicare’s role in shaping
end-of-life care in the United States likely goes beyond the proportion of
Americans who die as Medicare beneficiaries, given that older individuals
are disproportionately likely to die from advanced illness as opposed to an
accident or sudden acute event.
With some exceptions, such as the Medicare hospice benefit (de-
scribed later in this appendix), insurance coverage for individuals with ad-
vanced and terminal illnesses reflects coverage that is available to enrollees
more generally. The traditional Medicare program covers a broad range
of preventive, acute, and post-acute care services for approximately 49
million beneficiaries (KFF, 2012d). Medicare Parts A and B cover hospital
services; post-acute SNF care, home health, and rehabilitative services;
physician services; durable medical equipment; and ambulance services.
For those who elect to join a Part D plan, outpatient prescription drugs
are also covered. Medicare’s biggest coverage gap relates to the lack of
coverage for long-term services and supports. In addition, cost-sharing
requirements can be substantial for patients with high levels of service
use. Approximately 12 million of the 49 million Medicare beneficiaries
are enrolled in Medicare Advantage plans, which receive a capitated pay-
ment to cover all Part A and B services in addition to any supplemental
services that the plan chooses (e.g., dental, vision) (KFF, 2012c). Of
particular relevance to care at the end of life, Part A has covered hospice
since 1983 for individuals with terminal illnesses who have an expected
prognosis of 6 months or less and who agree to forgo curative treatment
for the terminal condition.
Both Medicaid and private insurance plans typically cover a set of
services similar to those covered by Medicare, although there is some
variation. All state Medicaid programs are required to cover a set of man-

dated services, including hospital services (both inpatient and outpatient),

physician services, home health services, and (unlike Medicare) long-term
services and supports. State Medicaid programs are permitted—but not
required—to cover prescription drugs, hospice, and personal care services.
While an optional benefit, all 50 states and the District of Columbia cover
prescription drugs, and all but one—Oklahoma—include hospice care as
a covered benefit for adults. In early 2013, the Louisiana Department of
Health and Hospitals announced plans to discontinue Medicaid coverage
of hospice services as part of a broad set of budget cuts intended to balance
the state’s budget (Adelson, 2012). After opposition was raised, these plans
were dropped (Adelson, 2013).
Private insurance coverage, including both covered benefits and cost-
sharing requirements, varies greatly by plan, with some policies offering
generous coverage and others offering more limited benefits. Private plans
that will be offered through the ACA-created health insurance exchanges
must cover services in 10 broad categories of “essential health benefits”
(EHBs), using the state’s specified “benchmark” plan (a private plan mar-
keted in the state) as the guide for the generosity of coverage of these 10
types of services. States may also choose to mandate that exchange plans
marketed in the state cover additional services. Hospice does not fall under
one of the broad categories of EHBs that must be covered by all plans of-
fered on the exchanges, so states are not required to insist that exchange
plans cover it. Although hospice is currently covered by the benchmark
plans for all 50 states and the District of Columbia, only 11 of the 50 states
and the District of Columbia require hospice as a covered benefit for all
plans offered through the exchanges.
KEY LIMITATIONS OF CURRENT FINANCING APPROACHES

The payment approaches used most commonly by Medicare, Medicaid,
and commercial payers have a number of limitations that can contribute to
suboptimal care at the end of life. Given its prominence in financing end-
of-life care in the United States, we focus primarily on the role of Medicare,
including the Medicare hospice benefit.
The Traditional Medicare Program

As noted above, Medicare finances health care for around 70 percent
of the individuals who die each year in the United States. The program does
not finance all services used at the end of life (as noted, for example, it does
not cover long-term supportive services), but it pays for the vast majority
of acute medical care and hospice that beneficiaries receive and thus plays a
substantial role in shaping how health care providers deliver care for those
who die. Although it can be difficult to discern the extent to which financing

APPENDIX D 461
and payment alone lead to shortcomings in the provision of end-of-life care,

researchers and other stakeholders often point to systemic incentives of the
traditional Medicare program when discussing challenges such as burden-
some, high-intensity treatments delivered at the end of life; fragmentation
across payers and settings, which often leads to poor coordination of care;
and benefit design features that inhibit delivering care that is in the best
interest of patients.
Issues with the General Financing Approach

Excessive health care utilization at the end of life can be burdensome
for patients and offers little clinical value. Previous studies of the Medicare
population have shown high rates of hospitalization and use of intensive
procedures at the end of life (Hogan et al., 2001; Kwok et al., 2011; Lubitz
and Riley, 1993; Teno et al., 2013). In addition to the cultural and profes-
sional norms that shape physician behavior, a key determinant of older
patients’ end-of-life care may relate to the fee-for-service (FFS) payment sys-
tem that is the foundation of reimbursement for services used by the nearly
three-quarters of Medicare beneficiaries enrolled in the traditional Medicare
program (IOM, 1997). FFS payment provides incentives to deliver more—
and often more aggressive—care, and can lead to fragmentation in financ-
ing and delivery. More generally, the predominance of FFS payment in U.S.
health care financing is often identified as a key impediment to addressing
problems of low-value, poor-quality care, as well as rapidly growing health
care expenditures (Schroeder and Frist, 2013).
Beyond incentivizing the delivery of more services and procedures,
the traditional Medicare program historically has done little to encourage
coordination across settings or benefit categories. Medicare generally uses
a “silo” approach to reimbursement, employing a separate payment ap-
proach for a given provider type for a specific type of service. This approach
ignores interrelationships between providers and the care they deliver and
can distort clinical decision making. For example, hospitals and post-acute
care providers are paid prospectively established rates for inpatient, SNF,
and home health care. Hospitals receive a fixed payment for an inpatient
hospital stay based on the diagnosis-related group (DRG) methodology,
regardless of length of stay or costs incurred. The DRG payment system
encourages hospitals to discharge patients as early as possible; in fact,
implementation of the DRG system was associated with a decline in hos-
pital lengths of stay and more frequent rehospitalizations (Lave, 1989). In
contrast, nursing homes receive a fixed per diem amount for SNF, based on
residents’ resource utilization groups (RUGs) acuity score, an approach that
incentivizes providers to capture fully residents’ acuity and therapy needs
but not necessarily to limit their lengths of stay. In somewhat of a hybrid of
these two approaches, home health agencies are paid a prospectively deter-

mined rate for 60-day episodes of care. Importantly, none of these payment
approaches gives providers any incentive or mechanism to coordinate the
services individuals receive, despite the interrelated trajectories of patients
between these settings.
The Medicare program’s fragmented approach to payment interacts
in negative ways with its largely disjointed approach to determining eli-
gibility across service categories (e.g., eligibility and payment are defined
separately for post-acute care services such as SNF care and home health
care, despite overlap in populations served and services offered). This frag-
mented dynamic is confounded further when individuals are dually eligible
for Medicare and Medicaid. The classic example of this disjuncture and
its potential negative impact on beneficiaries is the perverse incentive that
nursing homes have to hospitalize dually eligible residents who, in some
instances, could be treated more successfully and efficiently in the nursing
home. The financial incentive to shift residents onto the Medicare SNF
benefit where possible is created by the disparity between Medicare SNF
payments and the generally much lower Medicaid nursing home room and
board payments. This challenge has received increasing attention in recent
years as the financial and health costs of avoidable hospitalizations and
rehospitalizations have become better understood, and interventions and
strategies to address them have become more widespread (Lipsitz, 2013;
Segal, 2011; Teno et al., 2013).
A related dynamic of particular importance to end-of-life care is the
potential barrier the SNF benefit can present for nursing home residents’
enrollment in hospice (residents may not enroll in hospice while receiv-
ing Medicare-financed post-acute care, unless the two services are treat-
ing distinct conditions). In particular, nursing homes and beneficiaries
face financial disincentives to enrollment in Medicare hospice instead of
Medicare-financed SNF care when both are an option. For individuals being
discharged from the hospital who are eligible for either the hospice or SNF
benefit, the nursing home generally receives much lower reimbursement for
hospice-enrolled residents (whose nursing home care is typically paid for by
Medicaid) relative to residents who are utilizing the Medicare SNF benefit.
Moreover, residents not Medicaid eligible are liable for paying room and
board costs if they choose hospice instead of SNF care (dually eligible resi-
dents are not subject to cost sharing for nursing home care during a hospice/
long-term care stay or SNF stay). Calculating precise numbers of residents
enrolled in SNF care who could benefit from earlier admission to hospice
is difficult; however, previous research has identified a sizable minority of
individuals who transition from SNF care to hospice within 1 day of SNF
discharge, possibly suggesting that financial factors influence the timing of
referral (Aragon et al., 2012; Hoffmann and Tarzian, 2005; Miller et al.,
2012; Zerzan et al., 2000). The clinical implications of these incentives for

APPENDIX D 463
residents and the nature of the transition from skilled-rehabilitative care to

hospice care are unclear.
The Hospice Benefit as the Primary Financing

Mechanism for Palliative Care
The primary mechanism for financing palliative services in the Medi-
care program (and, for that matter, in most state Medicaid programs and
commercial insurance plans) is the hospice benefit. As discussed above, a
beneficiary is eligible for the Medicare hospice benefit only if two physicians
(one of whom can be the hospice physician) certify that the individual has a
prognosis of 6 months or less should the illness run its natural course and
if the beneficiary agrees to forego treatments intended to cure the illness
or prolong life. These two requirements often limit timely enrollment in
the hospice benefit, especially in the context of how the benefit is currently
used. Defining hospice eligibility relative to the 6-month prognosis mark
can be quite difficult, especially for individuals with noncancer diagnoses
(Christakis and Lamont, 2000; Sachs et al., 2004). Moreover, limiting hos-
pice to individuals who agree to forego curative therapies creates an artifi-
cial distinction between potentially life-prolonging and palliative therapies
and could impede both enrollment and quality of care (Meier, 2013; Temel
et al., 2010).
Together these eligibility requirements can serve to delay or prevent en-
rollment in the Medicare hospice benefit for some beneficiaries, effectively
denying them access to palliative care services. Of the almost half (45.2
percent in 2011) of Medicare decedents who use the hospice benefit before
their death, approximately one-quarter enroll 5 or fewer days before death
(MedPAC, 2013), a period that most agree does not allow the individual
or his/her caregivers to obtain the full benefits of hospice services (Bradley
et al., 2004; Iwashyna and Christakis, 1998; Kelley et al., 2012; Taylor et
al., 2007). Equally troubling is that many short-stay hospice users enroll
in the benefit only after a hospitalization, and often after a hospitalization
that includes an ICU stay. For example, one study estimates that 40 per-
cent of individuals who used hospice for 3 or fewer days in 2009 had a
hospitalization with an ICU stay prior to hospice admission (Teno et al.,
2013). In other words, even though an increasing number of Medicare
beneficiaries are using the hospice benefit, many do so only after exhausting
high-intensity services.
Although palliative care can be introduced at any point in a person’s
illness to manage symptoms and maximize quality of life, Medicare offers
little explicit coverage of palliative care outside of hospice. The Medi-
care Prescription Drug Improvement and Modernization Act of 2003 (the
MMA) authorized a one-time payment to a hospice for evaluation and

counseling services provided by a hospice physician for a beneficiary who

has not elected the hospice benefit and has a prognosis of 6 months or
less (fiscal year [FY] 2005 payment rate = $54.57). In addition, physicians
may provide some palliative care consultation in the context of physician
services financed by Medicare Part B. While these options provide some
financing for physician discussions with patients about end-of-life care
preferences and planning, the often time-intensive discussions are poorly
reimbursed, in part because of lower value units assigned to the provision of
evaluation and management services relative to the provision of procedures
under the Resource Based Relative Value Scale (RBRVS) used to determine
Medicare physician reimbursement rates for different types of services.
Outside of the hospice benefit and these narrow provisions for physician
consultation, there is no direct financing stream for palliative care services
under the Medicare program (CAPC, 2009). Yet despite the lack of direct
financing, many U.S. hospitals currently offer palliative care consultation
services. Researchers report that the number of such programs in hospitals
with 50 or more beds increased from 658 (24.5 percent) to 1,486 (58.5
percent)—a 125.8 percent increase—from 2000 to 2008 (CAPC, 2010).
Legislation has recently been introduced in both houses of Congress
that would provide Medicare and Medicaid reimbursement for advance
care planning. In March 2013, Congressman Earl Blumenauer introduced
the Personalize Your Care Act (HR 5795), which would provide Medicare
and Medicaid coverage for voluntary consultations with health care pro-
fessionals about advance care planning every 5 years or after a change in
health status. In August 2013, Senators Mark Warner and Johnny Isakson
introduced the Care Planning Act (S 1439), which would provide Medicare
and Medicaid coverage for voluntary discussions about treatment goals and
options for patients with advanced illness that result in a documented care
plan. The prospects for passage of these two bills are unclear.
Specific Concerns About the Current Hospice

per Diem Payment Approach
Currently, for 97 percent of Medicare-financed hospice days, Medi-
care pays the hospice agencies an all-inclusive per diem payment (i.e., the
FY 2014 routine home care rate of $156.26 per day, which is adjusted for
differences in local wage rates) to provide all care related to the terminal
condition; the other 3 percent of days are billed under one of three other
allowable categories (continuous home care, general inpatient care, or in-
patient respite) (MedPAC, 2013). In contrast to Medicare reimbursement
for other providers, hospice payments are not adjusted for case mix or
setting of care, and there is no provision for additional reimbursement for
particularly high-cost cases (i.e., outlier payments) (Huskamp et al., 2010).

APPENDIX D 465
While this approach to payment may have been appropriate when hospice
was used almost exclusively by cancer patients living at home (i.e., when
the benefit was first implemented in the 1980s), it is less sufficient in the
context of the much greater diversity in the diagnoses and settings of cur-
rent hospice users, and of hospice providers as well.
The Medicare Payment Advisory Commission (MedPAC) and others
have raised a number of concerns about the current payment approach
for the Medicare hospice benefit. First, while hospice costs are generally
higher for the first and last days of a hospice stay, the routine home care
per diem payment is uniform throughout the stay, making longer stays more
profitable (Huskamp et al., 2001, 2008, 2010). MedPAC has documented
dramatic increases in mean length of stay over the past decade, driven
largely by increases in duration of very long hospice stays (MedPAC, 2012).
Importantly, these increases are not just a result of the greater portion of
hospice users with noncancer diagnoses, as increased lengths of stay extend
across diagnosis categories (MedPAC, 2012). In 2009, MedPAC recom-
mended that the payment system be changed such that per diem payments
are higher for days at the beginning and end of a hospice stay and lower for
the middle days as length of stay increases (MedPAC, 2009). Second, the
structure of the hospice benefit—with no adjustments for particularly high-
cost stays—limits access for individuals with high-cost palliative care needs
(Huskamp et al., 2001; Lorenz et al., 2004). A national survey of hospices
found that 78 percent had at least one enrollment policy that could restrict
access for individuals with high-cost palliative care needs (Carlson et al.,
2011). Third, 18 percent of Medicare hospice stays in 2010 ended in live
discharge from hospice, raising concerns about the quality of care received
by these beneficiaries and questions about whether hospices are following
the eligibility criteria for the benefit (MedPAC, 2013). Fourth, increasing
numbers of hospice recipients are using the much more expensive general
inpatient (GIP) care category of hospice services, raising questions about
the appropriateness of such use (HHS OIG, 2013). Finally, hospice costs are
lower on average for hospice users living in nursing homes than for those
in the community, suggesting potential efficiencies in joint management of
care by the hospice and nursing home (HHS OIG, 1997, 2013; Huskamp
et al., 2010; MedPAC, 2013). In addition, hospice staff members provide
more aide visits but fewer nurse visits to nursing home residents than to
community-based residents, raising questions of duplicative payments be-
cause room and board fees paid by Medicaid or by patients themselves are
intended to cover aide services needed by residents (Miller, 2004).
Researchers have argued that the current structure of the Medicare
hospice benefit may be a particularly poor fit in the nursing home setting.
Beyond the barrier that the SNF benefit can create for nursing home resi-
dents’ enrollment in hospice and the need to pay appropriately for services

that can overlap with nursing home care discussed above, several features of
the nursing home population pose challenges vis-à-vis the hospice benefit:
diagnoses of noncancer terminal conditions (for which, as noted, prognos-
tication can be even more difficult than for cancer patients) are typically
more common than in the community; levels of cognitive impairment are
often high, and many residents do not have family members involved in
their care to assist with the hospice election process; and physicians are of-
ten based off site, making it more difficult to discuss hospice with patients
and family members (Huskamp et al., 2010).
Medicare Managed Care

Relative to the traditional Medicare (TM) program described above,
providers serving the nearly 30 percent of beneficiaries enrolled in the
Medicare Advantage (MA) program may be better positioned to promote
the use of recommended services at the end of life while discouraging
the use of unnecessary invasive procedures (Stevenson et al., 2013). MA
plans generally are paid on a per-person—rather than per-service—basis,
thereby rewarding plan efforts to manage chronic disease and to minimize
unnecessary treatment intensity at the end of life. Importantly, hospice is
one of the few benefits “carved out” of Medicare’s managed care program.
When managed care enrollees enter hospice, FFS Medicare becomes the
payer for both hospice care and care unrelated to the terminal condition;
health plans remain liable only for any supplemental benefits they provide
beyond those in TM, such as vision or dental care. This policy creates a
strong financial incentive for plans to promote hospice enrollment among
their more expensive terminally ill enrollees, while also diminishing—at
least somewhat—incentives to develop integrated, high-quality palliative
care networks for people with advanced illness. MedPAC voted in January
2014 to end this hospice carve-out policy, recommending that MA plans
begin to cover hospice services for the first time. The likelihood that this
recommendation, to be released in the March 2014 report, will be imple-
mented remains unclear.
Previous studies using data from the 1990s confirmed higher rates of
Medicare hospice enrollment in managed care versus TM while concluding
that this elevated use did not appear inappropriate (McCarthy et al., 2003;
Riley and Herboldsheimer, 2001; Virnig et al., 2001). Yet these data are
now almost two decades old and preceded passage of the MMA, which
has led to markedly increased enrollment of Medicare beneficiaries in
managed care plans (Afendulis et al., 2012). Outside of comparing hospice
enrollment between MA and TM enrollees, few studies have characterized
the intensity or quality of end-of-life care in the MA program. One recent
study analyzed end-of-life care for MA and TM decedents matched on

APPENDIX D 467
age, sex, race/ethnicity, and geography (Stevenson et al., 2013). Although

the study could not assess the appropriateness of service use or the quality
of end-of-life care delivered, its findings suggest that MA plans may do a
better job of minimizing high-intensity procedures at the end of life. MA
enrollees used hospice more frequently at the end of life than those being
cared for in traditional Medicare, although this difference narrowed over
the 2003-2009 study period. After accounting for differential enrollment
in hospice, MA enrollees also used fewer inpatient services overall and had
markedly lower emergency department use at the end of life compared with
matched TM enrollees.
Other Integrated Financing Models

In addition to the MA program, other approaches to integrated financ-
ing and delivery have relevance for Medicare beneficiaries with advanced
illness and offer potential advantages over Medicare’s traditional FFS
program. For instance, the Program of All-Inclusive Care for the Elderly
(PACE) is an integrated model of financing and delivery for dually eligible
older people who have nursing home–level clinical needs while also having
the potential to be cared for in the community with adequate supports.
Providers receive capitated payments from Medicare and Medicaid and
offer enrollees comprehensive, interdisciplinary care across the health care
continuum. A number of evaluations have assessed the potential of PACE
to keep enrollees out of nursing homes and hospitals and to generate sav-
ings (Mukamel et al., 2007); however, few have focused specifically on the
potential of such models to improve care at the end of life. Although studies
have noted some benefits to PACE enrollment with respect to end-of-life
care (e.g., reduced hospitalizations, improved end-of-life care planning,
patient-centered care) (Famakinwa, 2010; Mukamel et al., 2002), wide
variation also has been observed across PACE sites. Other integrated mod-
els of financing—including MA Special Needs Plans, focused on specific,
high-risk populations, and more recent state integrated care demonstra-
tions—have similar potential to improve the coordination of care. However,
little solid evidence has documented the fulfillment of this potential in these
types of models to date (Grabowski, 2007, 2009).
General Lack of Focus on Quality of Care in

Current Financing and Regulatory Approaches
Whether in the TM or MA context, an important impediment to im-
proving the financing and delivery of end-of-life care for beneficiaries is the
lack of established quality measures. It has become increasingly common
for both public and private payers to include in provider contracts financial

incentives for providers to meet specified performance standards in an effort

to improve the quality of care delivered to a population. However, exist-
ing contracts that include performance standards rarely include standards
relevant to the provision of high-quality end-of-life care. For example, the
Medicare accountable care organization (ACO) Shared Savings Program
(MSSP) and Pioneer ACO demonstrations (discussed later) include 33 per-
formance metrics in contracts with ACOs, not one of which is related to
the provision of high-quality end-of-life care (Architecture for Humanity,
2012). Similarly, Blue Cross Blue Shield of Massachusetts’ (BCBSMA’s)
Alternative Quality Contract, an innovative model that gives large provider
organizations a global payment that covers all care plus bonuses of up to 10
percent of the global payment for meeting specified performance standards,
includes a total of 64 performance standards (32 related to ambulatory
care and 32 to hospital care), none of which focuses on end-of-life care
(BCBSMA, 2010).
One sees a similar lack of focus on palliative and end-of-life care in
public reporting systems that are intended to assist patients in selecting
high-quality providers while also encouraging providers to improve quality
of care. For instance, although the National Quality Forum (NQF) recently
endorsed a set of quality measures with relevance to palliative and end-of-
life care (NQF, 2012), the Healthcare Effectiveness Data and Information
Set (HEDIS) measures that are used to assess and monitor MA plans his-
torically have not included such measures. Although nearly 28 percent of
Americans die in a nursing home (Teno et al., 2013), the Nursing Home
Compare website reports information on few clinical or other measures
relevant for assessing the quality of end-of-life care (it does report the per-
centage of long- and short-stay residents who self-report moderate to severe
pain), instead focusing on measures of functional outcomes (Huskamp et
al., 2012). The lack of measures appropriate to end-of-life care on the Nurs-
ing Home Compare website may not be surprising given the deemphasis on
such measures in nursing home inspection surveys, which focus more on
measures related to restoration and maintenance of function for residents.
Yet the almost exclusive focus on the latter types of measures has the poten-
tial to impede appropriate end-of-life care for residents, because some mea-
sures that may address natural symptoms experienced in the dying process
(e.g., functional decline, weight loss, dehydration) could be interpreted as
implying poor-quality nursing home care (Huskamp et al., 2012). Perhaps
as a further indication of this focus, the most recent version of the nursing
home resident assessment form (the Minimum Data Set, Version 3.0) drops
any reference to advance care planning, something that was included in the
previous iteration.
Although progress has been made in developing quality measures for
end-of-life care, as evidenced most prominently by the recent NQF endorse-

APPENDIX D 469
ment (NQF, 2012), incorporating these measures into provider payment

and oversight will be essential as health care is shaped increasingly by more
integrated financing and delivery systems such as MA plans and newer
innovations such as ACOs and patient-centered medical homes. Policy
development in this area needs to ensure adequate provider networks for
patients (e.g., including access to palliative care specialists), suitable qual-
ity measurement for oversight, and sufficiently flexible financial incentives
to foster coordination of care and mitigate incentives for selection or for
stinting on needed care.
As required by Section 3004 of the ACA, all Medicare-certified hospice
agencies must report a set of hospice quality measures starting in FY 2014
or face payment reductions (a 2 percentage point decrease in the market
basket update for that year). These measures include information about
pain screening and assessment, dyspnea screening and assessment, the per-
centage of opioid users who are offered or prescribed a bowel regimen,
and documented discussions about treatment preferences and patients’
beliefs and values. The ACA also stipulates that hospice quality measures
ultimately will be publicly reported (the timetable has yet to be announced),
as the Centers for Medicare & Medicaid Services (CMS) already does with
quality measures for other types of Medicare providers.
POSSIBLE FINANCING REFORMS AND POTENTIAL

IMPLICATIONS FOR END-OF-LIFE CARE
A number of payment and delivery reforms that are planned or cur-
rently under way would impact the utilization, cost, and quality of services
for patients with advanced illnesses, perhaps addressing some of the prob-
lems described above, but also possibly introducing other concerns. Some of
these reforms are being implemented as Medicare demonstration programs
authorized under the ACA; others are being considered or adopted more
broadly in the Medicare program, the commercial market, and/or state
Medicaid programs.
Bundling of Payments to Providers

There is now broad national interest on the part of payers, including
private insurers, Medicare, and Medicaid, in identifying alternatives to FFS
payment (Kirwan and Iselin, 2009; Schroeder and Frist, 2013). Growing at-
tention is focusing on bundled payment models as an alternative that could
lead to lower expenditures and increased efficiency (Cutler and Ghosh,
2012). Instead of reimbursing each provider individually for every service
delivered to a patient, bundled payment models entail payments for bundles
of related services. The bundle of services can be defined relatively nar-

rowly (e.g., to include both physician and nonphysician services delivered

during an acute inpatient stay) or more broadly (e.g., to include all acute
inpatient care and post-acute care related to an index hospitalization), with
the broadest bundle including all services provided to an individual over the
course of 1 year (i.e., a global budget).
Depending on how they are structured, models that bundle payments
across types of providers have the potential to remove some existing in-
centives related to setting of care that result from a “silo-based” payment
system (e.g., a nursing home’s incentive to hospitalize residents to receive
higher payments upon discharge). Bundled payments can also give provid-
ers greater flexibility to tailor service delivery, as well as incentives for
improved coordination of care (Hackbarth et al., 2008). However, these
arrangements also raise some concerns. Paying health care providers a fixed
fee to cover a bundle of services provides strong incentives for the efficient
delivery of services within the bundle. However, this arrangement also cre-
ates incentives for providers to increase the volume of bundles delivered as
a way to increase revenue, and encourages them to direct care to services
not included in the bundle where possible, limiting the potential for savings
(Weeks et al., 2013). More important, relative to an FFS system, paying
providers a fixed rate that covers a bundle of services can create incentives
for them to stint on care or attempt to select patients who have lower-than-
average expected costs, creating potential access problems for relatively
sicker patients—something that is seen currently in the Medicare hospice
benefit (Aldridge et al., 2012). Even with risk adjustment methods to ad-
just the bundled rate for observable characteristics related to a patient’s
expected costs, variation in expected spending across individuals within a
bundle that is not accounted for by risk adjustment methods will remain,
creating incentives for selection. Also, bundling payment for services deliv-
ered by different types of providers conceivably could restrict the patient’s
choice of provider (Sood et al., 2011). For example, if Medicare began pay-
ing hospitals a bundled rate for acute and related post-acute care, hospitals
might limit their network of post-acute providers in order to negotiate fa-
vorable rates (in exchange for volume of patient referrals) with a subset. As
discussed in more detail below, a more recent emphasis of bundled payment
approaches is the incorporation of quality metrics to incentivize providers
to balance quality and efficiency concerns in their provision of care.
In response to the strong incentives that would be created by a pure
bundled payment approach for these services, Feder has called for caution
in implementation, suggesting a hybrid payment approach that involves
the sharing of both risk and savings on the part of providers (Feder, 2013).
This type of mixed payment method, which has been proposed for use
in health care reimbursement for decades (Newhouse, 1994), could help
temper incentives for selection and stinting while still creating an incen-

APPENDIX D 471
tive for increased efficiency (in a sense, splitting the difference between
the positive and negative incentives created). Others have called for an
outlier payment system, as is used in the Medicare reimbursement system
for acute inpatient care (Carter et al., 2012). In addition, most agree that
performance measures with financial incentives for achieving high-quality
care should be included in efforts to bundle payments (see the discussion
below) (Schroeder and Frist, 2013; Sood et al., 2011).
Medicare demonstrations of two important models that involve the
bundling of payments have recently been undertaken: (1) the Medicare
Bundled Payments for Care Improvement Initiative (BPCII) and (2) the
MSSP and the Pioneer ACO Program.
In January 2013, CMS announced the provider organizations that will
participate in the BPCII, a demonstration that will test several models for
bundling provider payments. These models include one that bundles all
post-acute services delivered after hospital discharge, one that bundles an
acute inpatient admission with post-acute care delivered within 180 days
of discharge, and one that bundles an acute inpatient admission with any
related readmissions within 30 days of discharge (CMS, 2013a).
The BPCII is not Medicare’s first effort at bundling payments. In the
1990s, Medicare conducted the Heart Bypass Center Demonstration, which
paid seven hospitals an all-inclusive, per-discharge, bundled rate covering
all hospital and physician services provided during the inpatient stay for
coronary artery bypass graft (CABG) surgery. Over the 5-year demon-
stration period (1991-1996), Medicare saved approximately 10 percent
on in-hospital spending for CABG surgery recipients, with no evidence
of a worsening in health outcomes (Health Care Financing Administra-
tion, 1998). In January 2011, CMS implemented a change in the prospec-
tive payment system for end-stage renal disease (ESRD), which involved
expanding the bundle of services for which dialysis providers are paid
to include dialysis-related lab tests and injectable medications such as
relatively high-cost erythropoiesis-stimulating agents (ESAs, which some
argued were being overused), iron, and vitamin D analogs (Chambers et
al., 2013). In addition to the expansion of the bundle, Congress required
a Quality Incentive Program (QIP), which reduced payments to providers
that failed to meet certain performance standards. Preliminary analyses of
the impact of the changes suggest that ESA use dropped by approximately
15-20 percent immediately after implementation, while use of home-based
therapies such as peritoneal dialysis increased (Collins, 2012; Fuller et al.,
2013; Gilbertson et al., 2012). These data are preliminary and do not elu-
cidate the impact on health outcomes; a longer-term, more detailed study
is needed. Nevertheless, these early findings suggest that a change in the
bundle of services could have important implications for both spending and
quality of care.

While the experience of these previous demonstrations is informa-

tive, it does not necessarily generalize to the likely impacts of many of the
bundling models being implemented or discussed today. Both the CABG
and ESRD bundling demonstrations focused on relatively narrow bundles
of services delivered by a single provider organization, while many of the
current bundling models would involve bundling services across multiple
types of providers.
The MSSP and the Pioneer ACO Program, both implemented in 2012,
define a broad service bundle—all services financed by Medicare Parts A
and B—in setting spending targets for participating organizations. Under
the MSSP, implemented in 2012, participating ACOs are put at risk in one
of two ways: (1) use of a “one-sided” approach to risk, whereby the ACO
shares in any savings achieved relative to the benchmark spending level
(calculated using Medicare Part A and B spending data from the previous
3 years, inflated to the performance year for beneficiaries assigned to the
ACO) but is not subject to risk if expenditures exceed the benchmark; or
(2) use of a “two-sided” approach to risk, whereby the ACO shares in any
savings achieved while also sharing responsibility for spending that exceeds
the benchmark (Cao et al., 2013). For the one-sided model, ACOs share
in up to 50 percent of any savings, depending on their performance with
respect to the 33 performance measures related to quality that are used by
the program. ACOs that accept the two-sided model can share in up to 60
percent of savings, again depending on the achievement of performance
standards. To date, only a small number of MSSP ACOs have opted for
two-sided risk sharing, although current regulations state that all will be
required to accept downside risk in the second contract period.
The Pioneer ACO model is an alternative to the MSSP that CMS is test-
ing in 32 “advanced” organizations with experience operating under ACO-
type risk-sharing arrangements (CMS, 2012). With the Pioneer model,
ACOs can achieve higher levels of rewards and are subject to higher levels
of risk than is the case under the MSSP during years 1 and 2 of the dem-
onstration. Starting in year 3, ACOs are eligible to receive a prospective,
per-beneficiary per-month payment instead of some or all FFS payments
received under the current system (CMS, 2012).
In some respects, ACOs have a strong incentive to adopt care manage-
ment practices that optimize palliative care and hospice use for individuals
with advanced illness, provided these individuals remain assigned to the
ACO (i.e., by using sufficient services with an ACO-contracted primary
care physician). More specifically, previous studies have shown that early
integration of palliative care for individuals with advanced illness has the
potential to reduce health care costs overall (Morrison et al., 2008). At the
same time, this incentive is tempered by the ability of ACOs to refer indi-
viduals outside of the ACO, for example, to a hospice agency or a primary

APPENDIX D 473
care provider who does not contract with the organization. One key indi-
cator of how ACOs respond to these incentives will be determined by the
adequacy of the provider networks available for patients within the ACO
with advanced illnesses (e.g., including access to palliative care specialists).
A related indicator is the timing of palliative care and hospice utilization for
individuals at the end of life. For instance, relative to trends currently seen
in the Medicare program (described earlier in this appendix), will ACOs
achieve hospice lengths of stay that allow individuals to realize the strengths
of the benefit more fully, and will individuals access these services before
they enter the hospital and ICU?
Early results from the first year of the MSSP show that nearly half
(54 of 114) of the MSSP ACOs that began operation in 2012 had lower
spending than projected, and 29 produced savings relative to the target that
were large enough to allow them to share savings with Medicare (CMS,
2014c). Early results from the first year of the Pioneer ACO model suggest
that Medicare spending per beneficiary for individuals enrolled in these
organizations grew at a slower rate overall than spending for beneficiaries
enrolled in the FFS program in their area, although results differed across
Pioneer ACOs (L&M Policy Research, 2014). Relative to FFS beneficiaries
in the same area, 8 Pioneer ACOs had significantly lower Medicare spend-
ing growth per beneficiary, 1 had significantly higher Medicare spending
growth per beneficiary, and 23 had no statistically significant difference
(L&M Policy Research, 2014). Pioneer ACOs performed better than FFS
Medicare on 15 quality measures for which published data on FFS benefi-
ciaries were available, and 25 of the 32 had lower risk-adjusted readmission
rates relative to the benchmark rate for FFS beneficiaries (CMS, 2013e;
Toussaint et al., 2013). However, none of the 33 quality performance stan-
dards relates specifically to end-of-life care.
In the commercial market, some payers have also begun experimenting
with bundled payment models similar in many ways to the Medicare ACO
demonstration programs. In 2009, BCBSMA adopted its Alternative Qual-
ity Contract (AQC), which gives provider organizations a risk-adjusted
prospective payment for all primary and specialty care provided to a fixed
population (the global budget) for a 5-year period. As noted above, AQC
organizations are eligible for bonuses of up to 10 percent of their budget
based on their performance on 64 outpatient and hospital measures, again
none of which is particularly relevant or meaningful for end-of-life care.
AQC implementation was associated with a modest slowing of total
spending growth, particularly among organizations that had previously
been paid under FFS by BCBSMA, over the first 2 years of the contract
(Song et al., 2011, 2012). The savings were driven primarily by a shift of
outpatient care to providers with lower fees. However, effects appeared to
differ based on prior risk contracting experience with BCBSMA; lower use

explained about half of savings for enrollees of providers without prior

BCBSMA risk contracting experience. AQC implementation was also as-
sociated with some improvements in the contract’s performance standards,
which were larger in year 2 than in year 1. The AQC evaluation was unable
to assess the impact on care at the end of life because of relatively small
numbers of decedents each year in this nonelderly commercial population.
If a key goal of bundled payment models (regardless of how broad the
bundle) is to maintain or improve quality while increasing provider effi-
ciency—something that was not a primary focus of many previous models
intended to increase efficiency—then the success of these efforts will depend
on the ability to measure and monitor quality of care for patients with ad-
vanced illness. As noted above, none of the new models being implemented
or debated includes performance measures appropriate to measuring qual-
ity of care for patients with advanced illness.
As policy makers seek to incorporate quality measures into bundled
payment and other coordinated care efforts, the role of such measures can
be viewed as twofold. First, by integrating quality metrics into the financial
incentives for providers, policy makers can help ensure that providers are
delivering care that is aligned with expected standards. It should be noted,
however, that while the literature on pay-for-performance (P4P) strategies
suggests that P4P often does result in improved quality as measured by
the metrics used in the P4P systems, the improvements are often relatively
small in magnitude and may be somewhat narrowly focused on the clinical
areas that are targeted through the measures (Colla et al., 2012; Mullen
et al., 2010; Werner et al., 2013; Wilensky, 2011). Even if good measures
of end-of-life care quality were to be incorporated in these arrangements,
the extent to which overall quality of end-of-life care would improve in
response to the incentives is unclear. A perhaps even more important role
for quality measures in the context of financing reforms will be as part of
a broad effort of oversight and monitoring of organizations responsible for
providing end-of-life care. If policy makers detect important quality defi-
ciencies that result from reforms to the financing of care, modifications can
be made to such financing arrangements or to the oversight and compliance
requirements for providers.
Another new initiative that is related conceptually to the idea of better
integrating care individuals receive through the Medicare program involves
integrating Medicare and Medicaid financing for individuals who are dually
eligible for both programs. Also created by the ACA, the State Integrated
Care and Financial Alignment Demonstrations for Dual Eligible Beneficia-
ries allow states to use one of two models to coordinate services for du-
ally eligible individuals, something that has been challenging historically.
Although few states have begun to implement their programs, 26 states
have submitted applications to CMS for approval (CMS, 2013c). These

APPENDIX D 475
programs have the potential to improve the coordination of medical and

supportive services for dual eligibles at the end of life, but several caveats
should be kept in mind when considering their possible future impact. First,
although many states have expressed interest in developing these demon-
strations, few programs are under way, and not all states will ultimately
move forward with the initiative. Second, previous research has shown
that achieving savings in the context of these programs is difficult, in part
because states and provider organizations have relatively little experience
in coordinating acute and supportive services for a frail population. Finally,
and more specific to the context of end of life care, it appears that the state
demonstration proposals either carve out Medicare-financed hospice care
or explicitly exclude hospice enrollees from the demonstration (i.e., if in-
dividuals elect hospice, they are no longer enrolled in the demonstration)
(CMS, 2013b; Grabowski, 2007; KFF, 2012a,b). Although palliative care
is listed as an included benefit in some state proposals, most fail to mention
palliative care services explicitly. One notable exception is South Carolina’s
proposal and memorandum of understanding with CMS, which details a
new palliative care benefit for enrollees who may not meet hospice eligibil-
ity criteria (CMS, 2013d). The benefit is designed to provide care earlier in
the continuum of illness or disease process, and the care can be provided
in conjunction with potentially life-prolonging therapies.
In the context of discussing the potential value of coordinating long-
term services and supports with other acute and post-acute care services,
it is important to note that current provisions of the ACA do little to ad-
dress the financing and delivery of long-term services and supports for
non-Medicaid-eligible individuals, let alone how these services relate to
the broader health care system. The Community Living Assistance Service
and Supports (CLASS) Act (Title VIII of the ACA) could have bolstered the
financial protection of individuals from long-term care costs, but it was re-
pealed as part of the “fiscal cliff” deal in January 2013 (i.e., The American
Taxpayer Relief Act of 2012). Although the Commission on Long-Term
Care, which was created through the same legislation, was unable to reach
consensus on any alternative approaches to financing of long-term services
and supports, it did highlight the need to identify approaches that could
better integrate these services and supports with other acute and post-
acute services, including through bundled payment and interdisciplinary
workforce development initiatives (U.S. Senate Commission on Long-Term
Care, 2013).
Concurrent Care Models

The ACA calls on the Secretary of Health and Human Services to create
a Medicare Hospice Concurrent Care demonstration program under which

beneficiaries will no longer be required to forego curative therapies if they

meet other eligibility criteria for the hospice benefit. Budget neutrality is
required during the 3-year demonstration period, meaning that total Medi-
care expenditures under the demonstration must not exceed what Medicare
spending would have been in the absence of the demonstration.
In March 2014, CMS released a request for applications for this demon-
stration program, called the Medicare Care Choices Model (CMS, 2014b),
with applications due no later than June 2014. CMS plans to select at least
30 Medicare-certified hospice programs, including hospices that serve rural
areas and those that serve urban areas, for participation in the demonstra-
tion. Beneficiaries who meet Medicare hospice eligibility criteria and have
advanced cancers, chronic obstructive pulmonary disease (COPD), conges-
tive heart failure (CHF), or HIV/AIDS are eligible for enrollment in the new
model (CMS, 2014b). Participating hospices will provide services available
under the Medicare hospice benefit for routine home care and inpatient
respite levels of care (CMS, 2014a). CMS will pay participating hospices
$400 per beneficiary per month for these services and for related care coor-
dination activities (CMS, 2014a). Providers that deliver curative services to
beneficiaries enrolled in the demonstration will be allowed to bill Medicare
for the reasonable and necessary services they deliver (CMS, 2014a).
For a subset of its commercial clients, Aetna has used a concurrent
care model for almost a decade. In 2004, Aetna expanded its hospice and
palliative care benefits in two key ways: (1) by allowing members to receive
curative therapies while enrolled in hospice (i.e., concurrent care) and (2) by
requiring a prognosis of 12 or fewer months for hospice eligibility (as
opposed to the 6-month prognosis requirement for the Medicare hospice
benefit, which would still apply under the Medicare Concurrent Care dem-
onstration) (Krakauer et al., 2009; Spettell et al., 2009). At the same time,
Aetna implemented for all commercial and MA members a comprehensive
case management program in which services are provided by a nurse care
manager with extensive training in palliative care, using predictive model-
ing to identify potential enrollees for the program.
In a retrospective cohort study that matched current enrollees with
historical controls, Spettell and colleagues (2009) compared expenditures,
hospice use, and inpatient use for three groups of members who died in
2005, 2006, or 2007: (1) commercial enrollees who received the specialized
case management and the traditional hospice benefit; (2) commercial en-
rollees who received both the case management and the expanded hospice
benefit; and (3) MA enrollees who received the Medicare hospice benefit
and case management. They found that hospice enrollment and mean
number of hospice days for hospice users was substantially higher for all
groups relative to the historical controls (who died in 2004). In contrast,
the rate of inpatient stays was lower for the intervention groups relative to

APPENDIX D 477
the controls: 17 percent of those receiving case management plus enhanced

benefits had an inpatient stay versus 40 percent of their matched controls,
and 23 percent of those receiving case management and traditional hospice
benefits were hospitalized versus 43 percent of their controls. Commercial
members with both case management and the expanded benefit had longer
mean hospice stays than those who received case management and the tra-
ditional hospice benefit (37 versus 29 days, respectively), and both groups
had longer mean stays than the historical controls.
Krakauer and colleagues (2009) estimate that the increase in hospice
use and decrease in acute care service use resulted in a 22 percent decrease
in spending compared with historical controls for the commercial member
case management/traditional hospice benefit group (the authors provide
no estimates for the other groups, nor do they discuss detailed methods).
Given that hospice use was increasing during this period, the use of his-
torical controls likely overstates the impact of the interventions. While
the results of the Aetna experiment are informative, it is not possible to
estimate accurately the potential impact of the Medicare concurrent care
demonstration on expenditures using data from a program that offered
both concurrent care and expanded hospice eligibility for a commercial
under-65 population.
Outside of the Aetna program, no published studies shed light on the
expected costs of concurrent care. Studies of cost savings associated with
use of the Medicare hospice benefit document savings associated with stays
of fewer than 30 days and stays lasting from 53 to approximately 105 days
(Kelley et al., 2013a; Taylor et al., 2007). On the basis of these results, one
might expect overall savings to the extent that concurrent care resulted in
stays lasting fewer than 105 days. There are no data on the relationship
between use of the Medicare hospice benefit and Medicare spending for
longer stays because of smaller sample sizes in the upper tail of the distribu-
tion of stay duration. As a result, the extent to which demonstration sites
might be able to meet the budget neutrality requirement could depend on
who enrolls in the program and the duration of stays that result from the
implementation of concurrent care.
While the Medicare Concurrent Care demonstration program was not
implemented initially (with applications accepted starting only in spring
2014), a concurrent care requirement for children in Section 2302 of the
ACA was implemented immediately after the act’s passage. Effective March
2010, Medicaid and State Children’s Health Insurance Programs (SCHIPs)
may no longer require children up to age 21 to agree to forego curative
therapies to be eligible for the hospice benefit. As noted above, although
hospice is an optional benefit for Medicaid and SCHIP programs, the Early
Periodic Screening, Diagnosis, and Treatment (EPSDT) provision requires
that Medicaid and SCHIPs operating as Medicaid expansions cover hospice

for children up to age 21 for whom a physician certifies a prognosis of 6

months or less, and the concurrent care requirement would apply to all of
these children. Lindley and colleagues (2013) report that 31 of 50 states had
implemented concurrent care for children by 2012, but there have been no
published evaluations of the impact of the policy change on utilization of
hospice services, spending, or quality of care.
If implemented broadly, concurrent care models should reduce barriers
to accessing hospice. Existing concurrent care models would not, however,
address any barriers to high-quality palliative care created by the 6-month
prognosis requirement.
ACA-AUTHORIZED CHANGES TO
MEDICARE HOSPICE REIMBURSEMENT
The ACA calls on the Secretary of Health and Human Services to
implement revisions to the payment methodology for hospice services no
earlier than October 1, 2013. The legislation requires that such changes be
budget neutral in the fiscal year of their implementation. Medicare hospice
payment changes could help reduce barriers to access and make payments
more efficient, depending on the specific changes implemented by the sec-
retary. For example, an outlier payment system for hospice care, whereby
hospices would receive somewhat higher payments for particularly high-
cost stays, could help increase access for patients with high-cost pallia-
tive care needs. Similarly, payments could be adjusted for case mix and/
or setting to ensure that they reflect the true cost of services delivered to
hospice recipients. Of course, any reform of payment methodology could
produce both intended and unintended consequences. Also, any given
change implemented in isolation could produce very different outcomes
than a package of individual changes combined to meet the budget neu-
trality provision of the law. Absent the more substantial reforms detailed
above, it will be important to ensure that hospice payments are as fair
and efficient as possible so as to facilitate both access to the benefit and
its long-term sustainability.
CONCLUSION
Current approaches to financing services used by patients with ad-
vanced illness have a number of limitations that often lead to limited access
to hospice and palliative care services and poor quality of care at the end
of life. The ACA authorized a number of payment reforms, and payers are
adopting or considering other changes as well. These reforms could ad-
dress some—but likely not all—of the current limitations in financing (for
example, in most cases they would not add the role of long-term services

APPENDIX D 479
and supports for individuals at the end of life or at other points in their
health trajectories). Policy makers should anticipate both the intended and
unintended consequences of these reforms when structuring their design
and implementation. To this end, we identify the following key elements as
essential considerations for policy makers as they formulate and implement
relevant reforms:
• As Medicare, Medicaid, and commercial payers move forward

with efforts to bundle payment for groups of services, these models
should incorporate performance metrics that are appropriate for
patients with end-of-life care needs to ensure that the models do
not result in lower quality of care for individuals with advanced
illness. These measures would serve as the foundation for perfor-
mance incentives in this area and should also be used in oversight
and monitoring efforts to ensure high-quality care.
• In creating bundled payment systems, payers should consider
mixed payment methods that involve providers sharing both risk
and savings with the payer (as opposed to paying a fixed rate per
bundle), especially while end-of-life care quality measures are in an
early stage of development and use.
• Given the special concerns inherent in the financing of care for
nursing home residents at the end of life, payment models that
bundle acute, post-acute, and end-of-life care should be explored,
again using mixed payment methods. Some package of hospice
and palliative care services should be made available to nursing
home residents while they are on the Medicare SNF post-acute care
benefit.
• In the context of integrated care programs of all types, including
MA programs, PACE, and ACO programs with risk-based pay-
ment such as the Medicare ACO demonstrations and the AQC,
hospice and palliative care services should be included in the pack-
age of services for which these organizations are paid and held
accountable.
– Alternatives to carve-outs of hospice and palliative care ser-
vices for individuals with advanced illness that ensure access to
high-quality end-of-life and palliative care should be explored.
Although prospects for implementation are unclear, MedPAC
voted in January 2014 to recommend ending the hospice carve-
out within the MA program.
– Policy makers should ensure that these programs have ad-
equate provider networks for patients (e.g., including access
to palliative care specialists) and that they provide high-quality
care to patients.

• Nursing homes should be held accountable for the quality of end-

of-life care provided for all residents, including both those who
do and do not use hospice. To support such expectations, nursing
home survey processes, public reporting efforts such as Nursing
Home Compare, and P4P efforts should incorporate performance
measures appropriate for patients with advanced illness. In par-
ticular, the Nursing Home Compare tool could implement such
improvements in the near term to ensure that its focus is not ex-
clusively on restoration and maintenance of functioning.
• Changes in Medicare hospice benefit payment authorized by the
ACA and implemented by the Secretary of Health and Human
Services should attempt to match expected costs and payments
for different types of hospice stays while ensuring access to high-
quality end-of-life care for all beneficiaries with advanced illness,
including those with high-cost palliative care needs. The impact of
such changes on both expenditures and quality of care should be
monitored on an ongoing basis.
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Appendix E
Epidemiology of Serious Illness and

High Utilization of Health Care
Melissa D. Aldridge, Ph.D., M.B.A.

Amy S. Kelley, M.D., M.S.H.S.
Prior to the adoption and implementation of programs aimed at re-

ducing health care costs while providing high-quality care for patients,
it is critical to have a comprehensive sense of the drivers of health care
costs and the variability across different populations in annual health care
spending. Health care reform debate in the United States is focused largely
on the highly concentrated health care costs among a small proportion of
the population and policy proposals to identify and target this “high-cost”
group. The objective of this appendix is to characterize the population of
individuals with the highest total health care costs using analyses of existing
national datasets, peer-reviewed literature, and published reports. One of
the greatest gaps in terms of the research we reviewed for this appendix is
the lack of evidence regarding the impact of interventions or models of care
on total health care costs. Most of the analyses we reviewed focused on only
one payor—generally Medicare. Although such studies are informative, the
focus on Medicare costs alone has led to the misperception that older adults
and those at the end of life are the primary drivers of health care costs, and
yet when one evaluates total health care costs, as we do in this appendix,
that perception is not supported by the evidence.
We synthesize and augment existing evidence regarding individuals with
high health care costs and describe this group in terms of demographics,
clinical characteristics, and patterns of health care use. Based on existing
evidence, we focus on individuals with chronic conditions and functional
limitations. We then examine the costs and intensity of care for individuals
at the end of life and present new findings regarding the overlap between
the high-cost and end-of-life populations. We present results of our analy-
487

ses identifying three patterns within the high-cost group: individuals who
experience a discrete high-cost event in one year but who return to normal
health and lower costs; individuals who persistently generate high annual
health care costs due to chronic conditions, functional limitations, or other
conditions; and individuals who have high health care costs because it is
their last year of life. We conclude with a discussion of existing models of
care that target high-cost populations and of future research to improve
understanding of the population with highest health care costs. A critical
next step in research is to evaluate the impact of various interventions on
reducing total health care costs so that programs and policies implemented
across the health care system truly reduce total costs rather than merely
shifting costs from payor to payor.
CHARACTERIZING THE POPULATION WITH

THE HIGHEST HEALTH CARE COSTS
Distribution and Trends in Total Health Care Costs

In 2011, the United States spent $2.7 trillion on health care, more than
double what was spent in 2000 (CMS, 2014). It is projected that by 2040,
1 of every 3 dollars spent in the United States will be spent on health care
(CBO, 2007; Emanuel, 2012). In evaluating these estimates and their rel-
evance to health policy reform, however, it is important to understand the
definition of health care costs that is used to calculate these estimates. The
National Health Expenditure estimates (CMS, 2014) published annually
by the Centers for Medicare & Medicaid Services (the source of the $2.7
trillion estimate for 2011) include a number of expenditure categories un-
related to direct patient care (see Figure E-1). Specifically, they include ex-
penditures for government administration of health care programs; federal
public health initiatives; investments in health care research, structures, and
equipment; and non–patient care revenue, including revenue from gift shops
and hospital cafeterias. Our analysis in this appendix focuses exclusively on
the $1.6 trillion of patient care–related expenditures (shown in Figure E-1),
with the goal of identifying policy solutions for addressing costs specifically
related to patient care.
Health care reform debates that focus on health care costs generally fall
into three major categories: (1) discussion of high total health care costs
and reform proposals targeting how to decrease total costs, (2) discussion
of the growth in health care costs over the past decade and reform propos-
als aimed at how to “bend” the cost curve, and (3) discussion of the highly
concentrated health care costs among a small proportion of the population
and policy proposals for identifying this “high-cost” group and significantly
reducing their costs. The focus of this section of this appendix is on this

APPENDIX E 489
$189
$79
Government Administraon Costs
$154
Government Public Health Acvity
$24
$47 Investment (Research, Structures,
Equipment)
$168 Expenditures for Acve Duty and

Foreign Visitors
Health Non-Durable Medical Products
Expenditures- $106 (aspirin, band aids)
Patient Care
$1,628 Other Personal Health Care
(housekeeping)
Non-Paent Care Revenue (Gi
$307 Shop Revenue, GME)
Other
Health Expenditures-Paent Care
FIGURE E-1 Components of the $2.7 trillion of national health care expenditures,
2011.
NOTES: Expenditures are in billions of dollars; expenditure components were
estimated based on the Centers for Medicare & Medicaid Services 2011 National
Health Expenditure reportFigure E-1 with adjustments based on estimates from
(CMS, 2014),
Sing and colleagues (2006) and the 2011 Medical Expenditure Panel Survey data
(AHRQ and HHS, 2011). GME = graduate medical education.
third category—characterizing the subpopulation with the highest health

care costs.
The distribution of health care costs for the U.S. population consis-
tently exhibits a significant “tail” segment of the population with extremely
high costs. As of 2011, the top 5 percent of health care spenders (18.2 mil-
lion people) accounted for an estimated 60 percent of all health care costs
($976 billion) (see Figure E-2). In this high-cost subgroup, total annual
costs ranged from approximately $17,500 to more than $2,000,000 per
person based on our analyses of the 2011 Medical Expenditure Panel Sur-
vey (MEPS) data (AHRQ and HHS, 2011), adjusted to include the nursing
home population (National Center for Health Statistics, 2013).
Population with the Highest Health Care Costs

In an attempt to design policy solutions that target those individuals
with exceptionally high health care costs, it is critical to understand the

100 100.0
90
Cumulative Percentage of Total Spending
80
Top 5% of spenders account for an
70 estimated 60% of spending ($976 billion)
60.0
60
50
40
28.1
30
20 15.1
8.3
10 4.5
1.0 2.3
0.0 0.4
0.0
0
0 10 20 30 40 50 60 70 80 90 100
Percentage of Population Ordered by Health Care Spending
FIGURE E-2 Cumulative distribution of personal health care spending, 2011.

SOURCE: Total population and health care costs were obtained from the 2011
Medical Expenditure Panel Survey data (AHRQ and HHS, 2011), adjusted to in-
clude the nursing home populationFigure E-2 Center for Health Statistics, 2013).
(National
The entire nursing home population is estimated to be in the top 5 percent of total
health care spending (see the section below on the nursing home population for
details).
characteristics that define this population and thus potentially how and
why they incur such high costs. Using our own analyses of the 2011 MEPS
data combined with cost and population estimates for the nursing home
population, we present findings regarding this high-cost population in terms
of clinical characteristics and demographics.
The MEPS is a set of large-scale surveys of families and individuals,
their medical providers (for example, doctors, hospitals, pharmacies), and
employers across the United States (AHRQ and HHS, 2011). The house-
holds included in the survey are drawn from a nationally representative
subsample of households. The MEPS collects data on the specific health
services that Americans use, how frequently they use them, the cost of these
services, and how they are paid for, as well as data on the cost, scope, and
breadth of health insurance held by and available to U.S. workers.
The MEPS is considered the most complete source of data on the cost
and use of health care and health insurance coverage for the U.S. popu-
lation. The MEPS sample, however, does not include the population of
individuals residing in nursing homes, and therefore we augmented our
analyses of the MEPS data with estimates of the nursing home population
sourced from the National Health Expenditure Accounts (CMS, 2014) and

APPENDIX E 491
the Centers for Disease Control and Prevention (CDC) (Jones et al., 2009;
National Center for Health Statistics, 2013; Sing et al., 2006).
To reiterate, unlike the National Health Expenditure estimate of $2.7
trillion of total costs—which includes expenditures for government admin-
istration of health care programs; federal public health initiatives; invest-
ments in health care research, structures, and equipment; and non–patient
care revenue—our analyses in this section focus on the $1.6 trillion total
costs for patient health care services.
Chronic Conditions and Functional Limitations

A substantial and growing body of work suggests that a key factor
distinguishing individuals with the highest health care costs is the existence
of both chronic conditions and functional limitations. Analyses of data on
chronic conditions and health care costs have found that, of the popula-
tion with the highest health care costs, greater than 75 percent have one
or more of seven chronic conditions, including 42 percent with coronary
artery disease, 30 percent with congestive heart failure, and 30 percent with
diabetes (Emanuel, 2012). The U.S. Department of Health and Human
Services (HHS) launched an initiative to both prevent and better manage
care for multiple chronic conditions given their high prevalence and high
associated health care costs. HHS reports that more than 25 percent of in-
dividuals in the United States have multiple chronic conditions, and the care
of these individuals accounts for 66 percent of total health care spending
(HHS, 2014). An analysis of U.S. health care spending recently reported in
the Journal of the American Medical Association finds that chronic illnesses
account for 84 percent of total health care costs (Moses et al., 2013).
A report to HHS by The Lewin Group (2010) takes this research a step
further and evaluates the combination of chronic conditions and functional
limitations as a way to identify the subgroup with the highest health care
costs within the population with chronic conditions. This report concludes
that the combination of chronic conditions and functional limitations is
a better predictor of high health care costs than the number of chronic
conditions alone. It finds that although nearly one-half of people living in
the community have at least one chronic condition, fewer than one-third
of those with chronic conditions have any functional limitation. Thus, the
combination better pinpoints those with the greatest demand for health care
and supportive services.
Throughout this analysis, we define a chronic condition as one that
lasts or is expected to last 12 months or longer and either places limitations
on normal function or requires ongoing care (The Lewin Group, 2010).
A functional limitation is defined as having limitation in at least one of
the following: physical activity (for example, walking, bending, stooping);

TABLE E-1 Population and Health Care Costs by Existence of Chronic

Conditions and Functional Limitations
No. of People % Health Care Costs %
Total Population 312,514,999 $1,627,372,719,765
No chronic conditions or 149,340,364 48 186,301,532,393 11
Chronic conditions only 112,005,273 36 505,675,587,925 31
Functional limitations only 6,222,515 2 26,614,504,628 2
Chronic conditions and 44,946,847 14 908,781,094,819 56
SOURCE: The percentage distribution of population and costs by chronic condition/functional
limitation category was obtained from The Lewin Group (2010); total population and health
care costs were obtained from the 2011 Medical Expenditure Panel Survey data (AHRQ and
HHS, 2011), adjusted to include the nursing home population (CMS, 2014; National Center
for Health Statistics, 2013; Sing et al., 2006).
normal life activity (for example, work, housework, school); an activity of

daily living (ADL); or an instrumental activity of daily living (IADL) (The
Lewin Group, 2010).
The impact of the combination of chronic conditions and functional
limitations on health care costs is shown in Table E-1. Of the $1.6 trillion
spent on health care in 2011, 56 percent ($909 billion) was for the 14
percent of the population who suffered from both chronic conditions and
functional limitations. The second highest category of health care spend-
ers was those with chronic conditions only. This population incurred 31
percent ($506 billion) of total costs and made up 36 percent of the popula-
tion. It is clear from these analyses that although the presence of chronic
conditions is a key driver of health care costs, the addition of functional
limitations appears to differentiate a high-cost group within those with
chronic conditions.
Consistent with the distribution of health care costs by chronic condi-
tions and functional limitations shown in Table E-1, the population with
both chronic conditions and functional limitations is disproportionately
represented in the top 5 percent of health care spenders. Figure E-3 shows
that those with both chronic conditions and functional limitations make
up 72 percent of the top 5 percent of health care spenders while making up
only 12 percent of the rest of the population. Not surprisingly, 50 percent
of the lower-spending population has no chronic conditions or functional
limitations, while only 5 percent of the high-cost population has neither of
these characteristics.

APPENDIX E 493
100%
5%
1%
90%
22%
80%
50%
70% No Chronic Condions or
Funconal Limitaons
60%
Funconal Limitaons Only
50% 2%
40% Chronic Condions Only
72%
30% 37% Both Chronic Condions and
20% Funconal Limitaons
10%
12%
0%
Top 5% Other 95%
FIGURE E-3 Total health care costs for the top 5 percent and other 95 percent of
spenders by existence of chronic conditions and functional limitations.
SOURCE: The percentage distribution of costs by chronic condition/functional limi-
tation category and top 5%/other 95% categories was obtained from the National
Institute for Health Figure E-3
Care Management (NIHCM) Foundation (2012) analysis of
2009 Medical Expenditure Panel Survey data; these percentages were applied to
health care costs from the 2011 Medical Expenditure Panel Survey data (AHRQ
and HHS, 2011), adjusted to include the nursing home population (CMS, 2014;
The combination of chronic conditions and functional limitations may

be associated with higher health care costs for many reasons. The asso-
ciation may relate to the complexity of care coordination across multiple
providers and settings, including duplication of test and procedures. It may
also relate to increased use of specialists or increased likelihood of being
hospitalized. A recent commentary in the Journal of the American Medi-
cal Association (Emanuel, 2012) suggests that an estimated 22 percent of
health care expenditures are related to potentially avoidable complications,
such as hospital admission for patients with diabetes with ketoacidosis or
amputation of gangrenous limbs, or for patients with congestive heart fail-
ure for shortness of breath due to fluid overload (de Brantes et al., 2009;
Emanuel, 2012). Reducing these potentially avoidable complications by
only 10 percent would save more than $40 billion/year (Emanuel, 2012).
Furthermore, the disproportionally higher costs for this group may reflect
a lack of adequate community-based care and supportive services for those
with functional limitations, which leaves patients with no alternative but
to access the acute care hospital system by calling 911 or presenting to the
emergency department.

Total Population, By Age High-Cost Population, By Age
Age
65+
14% Age
65+
40%
Age
Age <65
<65 60%
86%
FIGURE E-4 Proportion of the total and high-cost populations by age.

SOURCE: 2011 Medical Expenditure Panel Survey data (AHRQ and HHS, 2011),
adjusted to include the nursing home population (CMS, 2012, 2014; National
Center for Health Statistics, 2013).
Figure E-4
partially bitmapped
Age and Health Care Costs
Our analyses of the association between older age and higher health
care costs suggests that although individuals aged 65 and over are dispro-
portionately in the top 5 percent of the population in terms of total health
care spending (see Figure E-4), almost two-thirds of the top 5 percent
spenders are younger than age 65. Although older age may be a risk fac-
tor for higher health care costs, older adults make up the minority of the
high-cost spenders. Furthermore, the proportion of total annual health care
spending for the population aged 65 or over (32 percent) has not changed
in a decade despite the growth in the size of that population (AHRQ and
HHS, 2011).
The pattern we have highlighted of individuals with both chronic
conditions and functional limitations generating disproportionately higher
health care costs is evident in both the population under age 65 and those
aged 65 and older (see Table E-2). Specifically, those with chronic condi-
tions and functional limitations in both groups incur more than 20 percent
of the nation’s total annual health care expenditures (and together account
for more than half of total spending), yet each group makes up less than
10 percent of the total population.
Race and Health Care Costs

The proportion of individuals who are nonwhite in the top 5 percent
of spenders compared with the bottom 95 percent is approximately the

APPENDIX E 495
TABLE E-2 Health Care Costs by Age, Chronic Conditions, and

Functional Limitations
Percentage of Percentage of Health
Population Care Costs
Age: Below 65
No chronic conditions or functional 46.2 11.5
limitations
Chronic conditions only 30.0 24.5
Functional limitations only 1.7 1.1
Chronic conditions and functional 7.8 22.0
limitations
Age: 65 and Older
No chronic conditions or functional 1.1 0.4
limitations
Chronic conditions only 5.9 6.9
Functional limitations only 0.3 0.4
Chronic conditions and functional 7.1 33.4
limitations
SOURCE: The percent distribution of population and costs by age and chronic condition/
functional limitation category was obtained from The Lewin Group (2010); total population
and health care costs were obtained from the 2011 Medical Expenditure Panel Survey data
(AHRQ and HHS, 2011), adjusted to include the nursing home population (CMS, 2012, 2014;
same (14.1 percent versus 20.5 percent) (see Figure E-5). The only notable
difference is that the Asian population makes up only 2.0 percent of the
top spenders and 5.2 percent of the lower spenders. Similarly, our analysis
of the population with the top 5 percent of health care costs by both age
and race (see Figure E-6) demonstrates that minority populations do not
appear to account for a differential proportion of health care costs by age.
There is significant variation by race in terms of per person costs and
payor (see Table E-3). The non-Hispanic white population has almost
double the median per person cost of the non-Hispanic black population
($1,660 versus $878). For all races, private insurance is the largest payor.
For the non-Hispanic white population, the proportion paid by private in-
surance is almost half, and the proportion paid by Medicaid is less than 10
percent. In contrast, for the non-Hispanic black and Hispanic populations,
the proportion paid by private insurance is approximately one-third, and
the proportion paid by Medicaid is roughly one-quarter.

100% 2.0% 5.2%

90% 10.2%
12.5%
80%
70% Multiple Races
60% Hawaiian/Pacific Islander
50% Asian
40% 85.9% American Indian/Alaskan Native

79.5%
30% Black
20% White
10%
0%
Top 5% Other 95%
FIGURE E-5 Proportion of the top 5 percent and other 95 percent of spenders by
race.
adjusted to include the nursing home population (CMS, 2014; Jones et al., 2009;
Figure E-5
1.0%
3.6%
White, <65
Black, <65
35.8% Other, <65
50.1% White, ≥65
Black, ≥65
Other, ≥65
6.6%
2.9%
FIGURE E-6 Proportion of the high-cost population by age and race.

Figure
adjusted to include the nursing home E-6
population (CMS, 2014; Jones et al., 2009;

TABLE E-3 Proportion of Health Care Costs by Race and Payor

Per Person Cost Percentage by Payor
Race/ Population Total Cost
Ethnicity (1,000s) Median Mean (in millions) OOP Private Medicare Medicaid Other
White, NH 198,127 1,660 5,604 991,244 14.9 46.7 25.9 6.0 6.5
Black, NH 37,322 878 4,677 138,138 8.8 31.2 23.6 24.6 11.8
Hispanic 52,717 637 3,289 126,189 13.0 34.5 19.1 23.1 10.3
Asian/ 16,814 792 4,355 56,675 11.2 37.8 14.1 31.0 6.0
Hawaiian/PI,
NH
AI/AK Native/ 6,146 1,157 3,430 18,479 15.1 36.1 15.4 18.1 15.4
Multi, NH
NOTES: This table does not include the nursing home population. AI = American Indian; AK = Alaska; NH = non-Hispanic; OOP = out of pocket;
PI = Pacific Islander.
SOURCE: 2011 Medical Expenditure Panel Survey data (AHRQ and HHS, 2011).

497
Health Care Costs by Payor

There has been very little change in the share of total health care costs
paid by major payors in the past decade. In both 2000 and 2011, approxi-
mately 40 percent of all health care costs were paid by private insurance,
followed by approximately 24 percent paid by Medicare (see Figure E-7).
A slightly smaller share of health care costs was paid out of pocket by pa-
tients in 2011 (13.9 percent) compared with 2000 (19.4 percent). For the
5 percent of people with the highest health care costs in 2011, a similar
proportion of their costs was paid by private insurance and Medicaid com-
pared with the proportion of total costs for 2011, but a larger share (31.4
percent) of the costs of the high-cost population was paid for by Medicare,
and a lower share (6.6 percent) was paid out of pocket by patients (see
Figure E-7).
Not surprisingly, payor distribution differs by age because most people
enroll in Medicare at age 65. The primary difference in payor by age group
is a shift from private insurance as payor for those younger than 65 to
Medicare as payor for those 65 and older (see Figure E-8).
50%
45%
Total Costs, 2000
40%
Total Costs, 2011
35%
30% Costs for Top 5%, 2011
25%
20%
15%
10%
5%
0%
Private Medicare Out of Pocket Medicaid Other
FIGURE E-7 Proportion of health care costs by payor, 2000 and 2011.
NOTE: This figure does not include the nursing home population because data on
this population for 2000 were not available.
Figure
SOURCE: 2011 Medical Expenditure E-7Survey data (AHRQ and HHS, 2011).
Panel

APPENDIX E 499
100%
90%
80%
70%
Other
60%
Out of Pocket
50%
Medicaid
40% Medicare
30% Private
20%
10%
0%
Top 5% Top 5%, Age: <65 Top 5%, Age: ≥65
FIGURE E-8 Proportion of health care costs by payor for those younger than 65
and 65 and older.
adjusted to include the nursing home population (CMS, 2012, 2014; National Cen-
ter for Health Statistics, 2013; Sing et al., 2006); payor data for the nursing home
Figure E-8
population were obtained from Moses et al. (2013) and assumed to be the same for
the younger than 65 and 65 and older nursing home populations.
Epidemiology of Chronic Conditions

Overall, individuals aged 65 and older have a higher prevalence of
chronic conditions and functional limitations (48 percent) compared with
those younger than 65 (9 percent). Because of the large size of the popu-
lation younger than 65, however, that population has a greater absolute
number of individuals with chronic conditions and functional limitations
(24 million, as compared with 22 million aged 65 or older).
For community-dwelling individuals with both chronic conditions and
functional limitations, the most prevalent chronic conditions are hyperten-
sion, lipid metabolism disorder, arthritis disorders, and depressive disorders
(The Lewin Group, 2010). The chronic conditions of allergies, chronic
sinusitis, and asthma are more frequent among those with chronic condi-
tions only than among those with both chronic conditions and functional
limitations (The Lewin Group, 2010).
To best understand groups of chronic conditions, CDC has used the
National Health Interview Survey to report the most common chronic
condition triads among civilian, noninstitutionalized U.S. adults with at
least three chronic conditions (Ward and Schiller, 2013) (see Table E-4).

TABLE E-4 Most Prevalent Chronic Condition Triads Among U.S.

Adults, 2010
Sex, Age, and Triad % (95% Confidence Interval)
Men
Ages 18-44
Arthritis/diabetes/hypertension 26.1 (16.70-38.45)
Asthma/diabetes/hypertension 15.5 (7.73-28.73)
Arthritis/asthma/hypertension 14.6 (7.17-27.31)
Arthritis/COPD/hypertension 12.2 (6.47-21.79)
Arthritis/CHD/hypertension 7.3 (3.23-15.83)
Ages 45-64
CHD/diabetes/hypertension 14.5 (11.37-18.22)
Arthritis/cancer/hypertension 11.2 (8.61-14.53)
Ages ≥65
CHD/diabetes/hypertension 17.8 (14.66-21.48)
Cancer/CHD/hypertension 14.6 (11.82-18.01)
Women
Ages 18-44
Arthritis/asthma/COPD 24.7 (17.68-33.50)
Asthma/COPD/hypertension 19.8 (13.64-27.89)
Ages 45-64
Arthritis/asthma/COPD 14.4 (12.08-17.16)
Ages ≥65
NOTES: This table does not include the nursing home population. CHD = coronary heart
disease; COPD = chronic obstructive pulmonary disease.
SOURCE: CDC, National Health Interview Survey, 2010 (Ward and Schiller, 2013).

APPENDIX E 501
The most prevalent triads of conditions were found to vary by both gender
and age.
The Nursing Home Population

We estimate that in 2011, total health care costs related to residents
of nursing facilities and continuing care retirement communities accounted
for $296 billion, or 11 percent of the $2.7 trillion in total national health
care expenditures and 18 percent of the $1.6 trillion in patient care–related
expenditures analyzed in this report. This estimate is based on informa-
tion from the National Health Expenditure Accounts (CMS, 2014), which
report expenditures from nursing facilities for the care of their residents,
in addition to estimates of the care of nursing home residents received out-
side of nursing facilities, such as during hospital stays (Sing et al., 2006).
As of 2011, there were 1.4 million Americans residing in nursing facilities
(National Center for Health Statistics, 2013). Thus, we estimate that the
average annual health expenditure per nursing home resident is more than
$200,000, which is significantly higher than the $17,500 minimum average
annual health expenditure required to be in the top 5 percent of health care
spenders based on MEPS data (AHRQ and HHS, 2011). Given that we do
not have access to data on the distribution of health care expenditures for
nursing home residents, we categorized the entire nursing home population
as being in the top 5 percent of spenders in all analyses in this appendix.
Further, given estimates that nearly all nursing home residents have at least
one chronic condition and require assistance with one or more ADLs (Hing,
1989), we categorized the entire nursing home resident population as hav-
ing both chronic conditions and functional limitations in this appendix.
In 2006, the most recent year for which data are available, 2.2 million
(6 percent) of the Medicare population spent some portion of the year re-
siding in a nursing home, and half of these individuals resided there for the
full year. Nursing home residence is concentrated near the end of life and
approaches 40 percent at the time of death (based on our analyses of the
Health and Retirement Study [HRS] Medicare population). Much of this
end-of-life nursing home care is provided under the skilled nursing facility
(SNF) Medicare benefit, with nearly one in three Medicare beneficiaries
using this benefit at some point during the last 6 months of life (Aragon
et al., 2012). In addition, Medicare beneficiaries residing in nursing homes
incur high costs related to hospitalizations (see Figure E-9). It is estimated
that approximately 24 percent of these hospitalizations are related to am-
bulatory care–sensitive conditions and are therefore potentially preventable.
This rate is even higher (30 percent) during a beneficiary’s first 6 months
following nursing home admission (Jacobson et al., 2010).

FIGURE E-9 Proportion of Medicare spending on hospital services among nursing

home residents.
NOTE: Includes beneficiaries whoFigure
were in long-term
E-9 care facilities as of January 1,
2006, including those who died before the end of 2006. Excludes Medicare Advan-
tage enrollees’ spending. Excludes Bitmapped
Medicare prescription of drug spending. DME =
durable medical equipment; SNF = skilled nursing facility.
SOURCE: Jacobson et al., 2010. Reprinted with permission from The Henry J.
Kaiser Family Foundation.
COST OF CARE AT THE END OF LIFE
Magnitude and Proportion of U.S. Health Care Spending on Decedents

We estimate that approximately 13 percent of the $1.6 trillion in
health care costs is for the care of individuals in their last year of life (see
Figure E-10). We computed this estimate using information from the HRS
regarding the cost of care for individuals in the last year of life paid by
Medicare, adjusted to account for the fact that 39 percent of costs in the
last year of life are paid by sources other than Medicare, including Med-
icaid (10 percent), out of pocket (18 percent, primarily for nursing home
care), and other sources (including private payers) (11 percent) (Hogan et

APPENDIX E 503
13% Cost for Patients Not at

the End of Life
Cost for Patients at the
87% End of Life
FIGURE E-10 Proportion of total health care costs for patients at the end of life.
SOURCE: Numerator: Health and Retirement Study and linked Medicare data, de-
cedents 2000-2008; adjusted to include non-Medicare payors (Hogan et al., 2001),
Figure
and adjusted to 2011 dollars using the E-10
Bureau of Labor Statistics Consumer Price
Index. Denominator: CMS 2011 National Health Expenditure report (CMS, 2014),
with adjustments based on estimates from Sing and colleagues (2006) and the 2011
Medical Expenditure Panel Survey data (AHRQ and HHS, 2011) (see Figure E-1).
al., 2001), and adjusted to 2011 dollars using the Bureau of Labor Statistics
Consumer Price Index. We then applied this estimated per person cost of
care in the last year of life to the total number of deaths in 2011 to obtain
the numerator of the 13 percent estimate shown in Figure E-10. As noted,
the majority of costs in the last year of life (61 percent) are paid for by
Medicare. Because of this, as well as the fact that Medicare is a readily
available dataset for analysis, many analyses of the health care costs for
decedents use estimates derived only from Medicare claims data. We con-
sider this a limitation of the existing evidence regarding health care costs
of decedents and have refined these analyses to estimate total health care
costs in this appendix.
During 2012, enrollment in Medicare averaged about 50 million peo-
ple. Net spending for the program was $466 billion. The Congressional
Budget Office (CBO) expects Medicare spending to climb rapidly over the
next decade, in part as a result of the retirement of the baby boomers (CBO,
undated). This rate of spending is widely believed to be unsustainable, and
the high rate of spending near the end of life is often cited as an area to ex-
amine for potential cost savings. Each year approximately 5 percent of fee-
for-service (FFS) elderly Medicare beneficiaries die (Riley and Lubitz, 2010).

Change in Spending on Decedents Over Time

Medicare expenditures in the last year of life average 5 times greater
than those in nonterminal years, and in recent years this end-of-life spend-
ing has accounted for approximately one-quarter of overall Medicare ex-
penditures (see Figure E-11) (CMS, 2011; Hogan et al., 2001; Hoover et
al., 2002; Lubitz and Riley, 1993; Riley and Lubitz, 2010). Over the past
30 years, overall health care costs have been climbing, but the proportion of
spending by Medicare for decedents has been stable. The share of Medicare
payments going to persons in their last year of life declined slightly from
28.3 percent in 1978 to 25.1 percent in 2006. After adjustment for age, sex,
and death rates, however, there was no significant trend (see Figure E-12).
Variation in Spending Among Decedents

It is important to note that not all deaths result in high spending, and
not all high spending occurs near death. For example, based upon data
from the Medicare FFS population within the nationally representative
HRS cohort adjusted to 2011 dollars, we find that while mean Medicare
spending in the last year of life is $50,576 (median $37,152), 25 percent of
beneficiaries incur $15,895 or less in Medicare spending in the final year of
$45,000
$40,000
$35,000
$30,000
$25,000
$20,000
$15,000
$10,000
$5,000
$0
1978 1988 1997 2006
T erminal Y ear Non-T erminal Y ear
FIGURE E-11 Average per person spending on health care among decedents,

1978-2006.
SOURCE: Riley and Lubitz, 2010.
Figure E-11

APPENDIX E 505
FIGURE E-12 Percentage dying and percentage of Medicare payments spent in the
last 12 months of life among fee-for-service Medicare beneficiaries aged 65 and
older, 1978-2006.
Figure
NOTES: Payment data not available forE-12
years 1998-2000.
*Costs adjusted for age, sex,Bitmapped
and survival status of the 1978 sample.
SOURCE: Riley and Lubitz, 2010. Reprinted with permission from John Wiley and
Sons. © Health Research and Educational Trust.
life. As Medicare spending accounts for approximately 60 percent of total

health care spending (Hogan et al., 2001), we estimate that mean total
health care spending in the last year of life is $82,911 (median $60,904),
and 25 percent of beneficiaries incur $26,057 or less in spending in the final
year of life (see Figure E-13).
Characteristics Associated with Increased Spending

Prior research has revealed significant variation in end-of-life health
care spending across patient groups, hospitals, and geographic regions.
The following subsections highlight several characteristics that have consis-
tently been shown to be associated with variations in spending at the end
of life. As previously mentioned, most existing analyses highlight only the
characteristics of the Medicare population rather than the population of
decedents as a whole.

$450,000
$400,000
$350,000
$300,000
$250,000
$200,000 Medicare
$150,000
Total
$100,000
$50,000
$0
1% 5% 10% 25% 50% 75% 90% 95% 99%
Percentage of Medicare Decedents
FIGURE E-13 Distribution of total health care and total Medicare spending in the
last year of life among Medicare beneficiaries.
SOURCE: Health and Retirement Study and linked Medicare data, decedents 2000-
2008, adjusted to 2011 dollar valueFigure
using theE-13
Bureau of Labor Statistics Consumer
Price Index.
Demographic Characteristics
Medicare expenditures in the last year of life decrease with age, es-
pecially for those aged 85 or older (see Figure E-14). This is in large part
because the intensity of medical care in the last year of life decreases with
increasing age (Levinsky et al., 2001; Kelley et al., 2011, 2012; Tschirhart
et al., 2013). Race and ethnicity have also consistently demonstrated strong
associations with costs of end-of-life health care. Hanchate and colleagues
(2009), as one example, found that in the final 6 months of life, Medicare
costs for non-Hispanic white patients averaged $20,166, while costs among
black patients averaged $26,704 (32 percent higher) and among Hispanics,
$31,702 (57 percent higher) (see Figure E-15) (Hanchate et al., 2009). The
higher costs for Hispanics and blacks were attributed to greater use of
hospital-based, life-sustaining interventions, including being more likely
to be admitted to the intensive care unit (ICU) (39.6 for Hispanics, 32.5
percent for blacks, and 27.0 percent for whites); more intensive procedures,
such as resuscitation and cardiac conversion (4.0 percent of Hispanics,
4.4 percent of blacks, and 2.7 percent of whites); mechanical ventilation
(21.0 percent for Hispanics, 18.0 percent for blacks, and 11.6 percent for
whites); and gastrostomy for artificial nutrition (9.1 percent for Hispanics,
10.5 percent for blacks, and 4.1 percent for whites) (Hanchate et al., 2009).

APPENDIX E 507
11 10.8
Age, y
10 65-74 9.4
75-84
9
≥85
Expenditures in Thousands, $
8
7
6.3
6
5 4.6
4.2
4 3.5
3 2.7 3.0 2.8
2.3 2.4
2.1 2.0 1.9
2 1.8 1.6
1.5 1.4 1.4
1.1 1.3
1
0
7-12 6 5 4 3 2 1
Months Before Death
7-12
FIGURE E-14 Medicare spending in the last 12 months of life by age.

SOURCE: Levinsky et al., 2001. Reprinted with permission from the American
Figure E-14
Medical Association. Copyright © (2001) American Medical Association. All rights
reserved. Bitmapped
16
White
Black
Hispanic
14 Other 13.9
Average Medicare Expenditure, × $1000
12
11.1 11.3
10
8.9
8
6 6.0
5.2
4.8
4.0
4 3.5 3.7
3.1 3.1
2.6 2.7 2.4 2.5
2.2
2 1.9 2.1 1.8 1.7
2.1 2.0
1.4
0
6 5 4 3 2 1
Number of Months Before Death
FIGURE E-15 Medicare spending in the last 6 months of life by race and ethnicity.
SOURCE: Hanchate et al., 2009. Reprinted with permission from the American
Medical Association. Copyright © (2009) American Medical Association. All rights
reserved.
Figure E-15
Bitmapped

Health Characteristics: Medical Conditions,

Physical Function, and Debility
As described above, chronic conditions and functional limitations are
associated with high health care spending. These relationships are also
observed among decedents (see Table E-5).
In addition to chronic conditions and functional limitations, a few life-
limiting conditions and catastrophic health events, such as advanced cancer
or stroke, are also associated with higher costs at the end of life. Specific
conditions and the different trajectories of functional decline seen with
them are associated with different spending patterns prior to death. For
example, functional decline may be due to progression of a chronic disease,
such as chronic obstructive pulmonary disease (COPD), or the accumula-
tion of multimorbidity or frailty, and in such cases this decline typically
results in a steadily increasing pattern of health care spending (Chan et al.,
2002; Lunney et al., 2002, 2003). Alternatively, people dying from single
organ failure, such as congestive heart failure, may experience gradually
diminishing physical function with periodic exacerbations of their illness,
thus incurring very high episodic spending before death. Others who die
suddenly, possibly from a stroke or motor vehicle accident, may incur little
health care spending in their last year of life (Lunney et al., 2002, 2003).
One recent study examined the impact of medical conditions and functional
TABLE E-5 Health Care Costs Among Medicare Fee-for-Service

Beneficiaries by Chronic Conditions and by Functional Limitations in the
Last Year of Life
Total Health
No. of People % Care Costs %
Age: 65 or older, FFS Medicare
beneficiaries
No chronic conditions or 15,484 1 $39,771,569 0
Chronic conditions only 411,774 28 28,271,965,777 23
Functional limitations only 20,323 1 613,233,917 0.5
Chronic conditions and 1,037,419 70 94,197,646,891 77
NOTES: Functional limitation defined as needing help with any activities of daily living.
Medicare costs represent on average 61 percent of total health care costs (Hogan et al., 2001).
FFS = fee for service.
SOURCE: Health and Retirement Study and linked Medicare data, decedents 2000-2008,
scaled to the full Medicare population and costs adjusted to 2011 dollars using the Bureau of
Labor Statistics Consumer Price Index.

APPENDIX E 509
TABLE E-6 Association of Functional Status and Medical Conditions

with Medicare Costs in the Last 6 Months of Life
Adjusted Rate 95% Confidence
Patient Characteristics Ratio Interval
Functional status (reference: independent in
activities of daily living)
Stable moderate impairment 1.12 0.92-1.36
Stable severe impairment 1.20 1.04-1.39
Decline from independent to moderate 1.34 1.15-1.56
impairment
Decline from moderate to severe impairment 1.42 1.23-1.64
Decline from independent to severe 1.64 1.46-1.84
impairment
Dementia/Alzheimer’s disease 0.78 0.70-0.86
Diabetes 1.14 1.04-1.24
Chronic kidney disease 1.24 1.11-1.38
Stroke/transient ischemic attack 1.15 1.04-1.28
Congestive heart failure 1.08 0.98-1.18
Cancer 1.06 0.95-1.19
Chronic obstructive pulmonary disease 1.03 0.95-1.13
Depression 1.03 0.92-1.15
SOURCE: Health and Retirement Study and linked Medicare data, decedents 2000-2008.
Adjusted for age, race, ethnicity, education, net worth, Medicaid, Medigap, nursing home
residence, relative nearby, religiosity, Self Reported Health, three other chronic conditions,
advance directive, regional hospital beds, and local pattern of end-of-life spending (Kelley et
al., 2011).
decline simultaneously on end-of-life Medicare costs and demonstrated an

independent and dose effect–like association between functional decline
and increasing health care costs (Kelley et al., 2011). For example, a person
experiencing a decline from functional independence to needing assistance
with one ADL incurred 34 percent higher Medicare costs, all other fac-
tors being held equal, while a decline from independence to needing help
with four or more ADLs was associated with 64 percent higher costs (see
Table E-6).
Notably, this study found a negative association between dementia
and total end-of-life Medicare costs, after adjusting for functional status,
nursing home residence, and other characteristics. Patients suffering with
dementia typically experience a long, slowly debilitating course of illness.
A large portion of their health care expenses is focused on custodial and
supportive care services, which are not covered by Medicare and therefore

not represented in this study. A recent analysis of total health care costs
associated with dementia found that the yearly costs per person attribut-
able to dementia were approximately $50,000 (2010 U.S. dollars) (Hurd
et al., 2013).
Advance Care Planning, Personal Preferences,

and Goals of Care Discussions
Evidence is mixed regarding the impact of patient preferences on health
care costs and treatment received. Many studies reveal a poor correlation.
In the Study to Understand Prognoses and Preferences for Outcomes and
Risks of Treatments (SUPPORT) trial, 35 percent of patients reported care
conflicting with preferences, and such discord was associated with higher
costs (Teno et al., 2002). In the same study, investigators found that the
risk of in-hospital death, a marker of high end-of-life health care costs, was
associated with greater hospital bed availability and not associated with
patient preferences (Pritchard et al., 1998). Similarly, a prospective study of
patient preferences for life-sustaining treatment found no relationship with
treatment received (Danis et al., 1996).
However, conflicting evidence does exist. A study of the association
between treatment-limiting advance directives and Medicare costs revealed
a significant correlation with lower costs, but only within regions with
patterns of high end-of-life health care spending (p = 0.04) (Nicholas et
al., 2011). Zhang and colleagues (2009) found that among patients with
advanced cancer, the cost of health care in the last week of life was 35.7
percent lower among patients who had reported discussions of end-of-life
care preferences (p = 0.002).
Regional Variation
The wide variation in health care spending by geographic region has
been the focus of extensive research and policy debate over the past three
decades. The Dartmouth Atlas of Health Care, a leading contributor to
this research, has focused primarily on Medicare spending, with particular
interest in spending and patterns of utilization at the end of life. This work
has highlighted a four-fold difference in Medicare end-of-life spending
across geographic regions (see Figure E-16) (Fisher et al., 2003a).
Policy makers have seized upon these findings and suggested reform
measures that would penalize high-spending and reward low-spending
regions. An Institute of Medicine (2013) report, Variation in Health Care
Spending: Target Decision Making, Not Geography, also notes wide re-
gional variation in Medicare spending, but identifies the greatest variation
in the use of post-acute services as opposed to hospital services. In addition,

APPENDIX E 511
FIGURE E-16 Quintiles of Medicare spending in the last 2 years of life by region.
SOURCE: Fisher et al., 2003a. Reprinted with permission from Annals of Internal
Medicine. Figure E-16
Bitmapped
the report cites wide regional variation in spending among private insurers;
however, these patterns are not congruent with the patterns observed in
Medicare and are more strongly related to differences in pricing. In sum, the
report recommends against a geography-based value index or adjustment
for Medicare services and instead suggests policies to promote high-value,
patient-centered care.
Personal and Regional Factors Examined Simultaneously

A notable weakness in prior studies of regional variation is the in-
ability to control adequately for severity of illness by studying claims
or administrative data alone. This method also fails to assess and adjust
for many of the other patient factors, such as function, that are known
to be associated with spending. A recent examination of determinants
of Medicare expenditures in the last 6 months of life aimed to consider
simultaneously the influence of patients’ social, medical, and functional
characteristics while also adjusting for regional practice patterns and sup-

ply of medical resources, such as hospital beds and medical subspecialists.

As hypothesized, this analysis revealed a strong, independent association
of functional debility and decline with higher Medicare expenditures, and
the same for selected medical conditions. In addition, after controlling for
an extensive group of personal and health characteristics, regional factors
continued to be significantly associated with Medicare costs. For example, a
person in a region within the second quintile of practice pattern intensity, as
measured by Dartmouth’s End-of-Life Expenditure Index, incurs 10 percent
more Medicare expenditures in the last 6 months of life than a person in
a region within the lowest quintile, holding all other characteristics equal.
Furthermore, each additional hospital bed per 10,000 residents was found
to increase Medicare expenditures in the last 6 months of life by 1 percent
if all other factors were held equal (Kelley et al., 2011). These findings
support an independent effect of regional characteristics on health care
spending, beyond the effect of patient-level factors.
Model or Settings of Care: Hospital Use

Hospital use accounts for the largest portion of Medicare expenditures
near the end of life (CBO, undated; CMS, 2011). Over the past 30 years,
overall use of hospital and ICU services has increased, while proportionally
this use among decedents has remained stable (see Table E-7) (Riley and
Lubitz, 2010). Wide variation in use of these services has also been noted
TABLE E-7 Measures of Inpatient Hospital Use Among Medicare

Beneficiaries Aged 65 and Older by Survival Status, 1978-2006
Utilization Measure and
Survival Status 1978 1988 1997 2002 2006
Percentage Hospitalized
March decedents 64.5 63.7 62.6 62.8 62.5
Survivors 18.5 16.1 16.5 17.0 16.7
Percentage Undergoing Multiple
Hospitalizations
March decedents 20.3 22.2 24.5 25.6 27.0
Survivors 5.2 4.8 5.6 5.9 5.6
Percentage Using ICU/CCU
Services
March decedents N/A 27.7 28.7 30.7 33.1
Survivors N/A 4.6 5.6 6.1 6.3
NOTES: p <0.05 for positive linear trend in multiple hospitalizations for decedents and in
ICU use for both decedents and survivors. Trends in multiple hospitalizations for survivors
and percentage hospitalized for decedents and survivors were not statistically significant (Riley
and Lubitz, 2010). CCU = critical care unit; ICU = intensive care unit.
SOURCE: Medicare Continuous History Sample, Fee-for-Service Medicare beneficiaries.

APPENDIX E 513
across beneficiaries and geographic regions. Among the decedent Medicare

beneficiaries within the HRS cohort, one-quarter had no hospital days
within the last 6 months of life, while 40 percent had 10 or more days. In
an examination of the personal and regional factors associated with greater
hospital use, one study found higher hospital use among all subjects with
functional decline and those with stable severe functional disability com-
pared with those functionally independent in their ADLs. For example,
those declining from independence to severe debility experienced more than
9 additional hospital days in the last 6 months of life, other factors being
held equal (Kelley et al., 2012). This study also revealed greater hospital
use among blacks (6 more days on average) and Hispanics (5 more days).
PUTTING IT TOGETHER: THE INTERSECTION OF THE

HIGH-COST AND END-OF-LIFE POPULATIONS
Estimating the Overlap in Population

Using our analyses of the population with the highest annual health
care costs and the population at the end of life, we have generated an esti-
mate of the overlap between these two groups. Specifically, of the estimated
18.2 million individuals annually who are in the 5 percent of the popula-
tion with the highest health care costs, 11 percent (2.0 million) are in their
last year of life (see Figure E-17). Further, of the 2.5 million annual deaths
in the United States, 80 percent (2.0 million) were among individuals who
incurred health care costs in their last year of life that place them in the top
5 percent of all spenders, while 20 percent (0.5 million) did not incur high
health care costs in their last year of life.
Identifying Illness Trajectories

Given the relatively small proportion of the population with the high-
est health care costs who are at the end of life (11 percent), it is critical
to gain a deeper understanding of the likely illness trajectories of the
other 89 percent. We estimate that the population with the highest annual
health care costs can be divided into three potential illness trajectories (see
Figure E-18):
• individuals who have high health care costs because it is their last
year of life (population at the end of life);
• individuals who persistently generate high annual health care costs
due to chronic conditions, functional limitations, or other condi-
tions who are not in their last year of life and who live for many

years, generating high health care expenses (population with per-

sistently high costs); and
• individuals who experience a significant health event in one year
but who return to normal health (population with a discrete high-
cost event).
We estimate that the largest proportion of the population with the

highest annual health care expenditures are individuals who experience a
High Cost
Population
18.2 million
2 million
End-of-Life
Population
0.5 million
FIGURE E-17 Estimated overlap between the population with the highest health
care costs and the population at the end of life.
NOTE: The entire nursing home population is estimated to be in the top 5 percent
of total health care spending (see E-17
Figure the earlier section on the nursing home popula-
tion for details).
SOURCE: Total population and health care costs were obtained from the 2011
Medical Expenditure Panel Survey data (AHRQ and HHS, 2011), adjusted to in-
clude the nursing home population (National Center for Health Statistics, 2013).
The distribution of total costs for the end-of-life population was estimated from
the Health and Retirement Study and linked Medicare data, decedents 2000-2008,
adjusted to include non-Medicare payors (Hogan et al., 2001) and adjusted to 2011
dollars using the Bureau of Labor Statistics Consumer Price Index.

APPENDIX E 515
Population at the End of Life
Population with Persistently

High Cost
Population with a Discrete

High-Cost Event
FIGURE E-18 Population with the highest health care costs (top 5 percent) by ill-
ness trajectory.
NOTES: The entire nursing home population is estimated to be in the top 5 percent
Figure
of total health care spending (see E-18section on the nursing home population
the earlier
Bitmapped--new
for details). For a description of key trajectory groupings, see
the calculation of illness
the discussion below.
adjusted to include the nursing home population (National Center for Health Sta-
tistics, 2013).
discrete event generating significant health care costs in a given year. We

used evidence from a recent study (NIHCM Foundation, 2012) regarding
the persistence of spending patterns over time. This study found that of
individuals in the top 5 percent of health care spending in a given year, 62
percent were no longer in the top 5 percent of spending the next year. A
portion of these individuals died; the rest transitioned to the bottom 95th
percentile in health care spending the following year. Some examples of this
illness trajectory might include people who have a myocardial infarction,
undergo coronary bypass graft surgery, and return to stable good health
after a period of rehabilitation; individuals who are diagnosed with early-
stage cancer, complete surgical resection and other first-line therapies, and
achieve complete remission; or people who are waiting for a kidney trans-
plant on frequent hemodialysis and then receive a transplant and return to
stable health. There may be relatively less opportunity for cost reductions
in this population because many high-cost events may be unavoidable. Fur-
thermore, given that most of these individuals return to better health (or at

least return to the lower-cost population) within 1 year, health care dollars
may already be well spent for them.
Population with Persistently High Costs (40 percent)

The second largest proportion of the high-cost population is those with
persistently high health care costs. This subgroup is most likely character-
ized by the chronic conditions and functional limitations described earlier.
Evidence suggests that this population tends to be older. A recent study
(Cohen and Yu, 2012; NIHCM Foundation, 2012) revealed that among
the population in the top 10 percent of health care spending persistently
over a 2-year period, 42.9 percent were aged 65 or older, compared with
only 19.2 percent of individuals who shifted from the top 10 percent to the
bottom 75 percent in the following year. The existence of a subgroup of in-
dividuals with persistently high spending was also evident in an analysis of
Medicare beneficiaries in which it was found that nearly half of beneficiaries
who were high cost in 1997 were also high cost in 1996, and more than 25
percent were also high cost 4 years previously (CBO, 2005). Furthermore,
44 percent of those individuals remained high cost in 1998, and 25 percent
were high cost in 2001 (see Figure E-19). This may be a key population
for targeted interventions to reduce costs because such interventions may
enable cost reductions across multiple years.
FIGURE E-19 Expenditure history of Medicare beneficiaries who constituted the

top 25 percent of spending in 1997.
SOURCE: CBO, 2005.
Figure E-19
Bitmapped

APPENDIX E 517
Population at the End of Life (11 percent)

As described earlier, 80 percent of those in the last year of life are among
the high-cost population. Functional debility and decline are strongly cor-
related with being among the highest spenders. In addition, some chronic
illnesses, including diabetes, chronic kidney disease, dementia, and others,
are associated with high health care costs, particularly in the setting of func-
tional decline. Race and ethnicity are also noted to be consistent predictors
of higher costs, although the reason for this association remains unclear,
and it may be an artifact of poor-quality care or limited access to care over
the life span (IOM, 2002). Finally, regional differences in spending and use
of specific health care services, including hospital and ICU care, persist in
studies controlling for patient factors.
Limitations and Gaps in the Evidence

Throughout this analysis, we have aggregated existing statistics and
evidence and combined them with our own analyses and estimates. In
a number of areas, the evidence presented here is limited by incomplete
data. Studies of hospital and regional variation using only administrative
claims do not adjust sufficiently for patient risk factors (i.e., health, func-
tion, and socioeconomic status) or patient preferences. Additionally, most
prior studies have focused on single diseases or a single predictive factor
in isolation, and thus are not generalizable to the broader population of
seriously ill older adults with multiple chronic illnesses or advanced organ
failure (Emanuel et al., 2003; Hamel et al., 1999; Shugarman et al., 2007;
Zhang et al., 2003).
Additionally, measurement of diagnoses within administrative data
does not adequately measure severity of illness. Variation exists in regional
practice patterns in the use of diagnostic testing and billing codes, creat-
ing the potential for bias in analyses based on the measurement of chronic
disease or total disease burden (Song et al., 2010; Welch et al., 2011).
Many studies of the costs of care at the end of life have been retrospective
mortality follow-back studies of decedents and are subject to selection bias
because they cannot account for those who survived despite a high risk of
death (Bach et al., 2004). These data, therefore, are particularly difficult to
translate to policy or service design given the prognostic uncertainty associ-
ated with serious illness in real clinical settings.
Finally, as described earlier, we have made a number of assumptions re-
garding health care expenditures for nursing home residents given a lack of
detailed data on this population. Further, our cost analyses do not include
estimates for costs such as informal caregiving and lost wages. Consider-
ation of these costs must be included in the context of any new or reformed

design of health services because the economic implications of these costs

for the aging population are potentially profound.
CONCLUSIONS AND RECOMMENDATIONS
Conclusions
Our analyses lead to the following conclusions:
• Although many proposals to reduce health care costs target the

high cost of end-of-life care, on a population level, the cost of car-
ing for individuals in their last year of life represents 13 percent of
total annual health care spending, and these individuals make up
just over 10 percent of the high-cost population.
• The population with both chronic conditions and functional limi-
tations is a key driver of high health care costs. The addition of
functional limitations appears to differentiate a high-cost group
within those with chronic conditions and may characterize those
who are persistently in the high-cost group.
• Instead of a focus on chronic conditions alone, a clinical indicator
of one’s potential to accrue high health care costs may be the onset
of need for help with daily activities (functional limitations) in an
individual with chronic conditions.
• Although older age may be a risk factor for higher health care
costs, older adults make up the minority of the high-cost spenders.
The proportion of total annual health care spending for the popula-
tion aged 65 or older has not changed materially in a decade.
• Current data indicate that increased health care spending is not
associated with higher-quality care, as measured by longevity, qual-
ity of life, and satisfaction (Fisher et al., 2003a,b; Mittler et al.,
2010; Skinner et al., 2009; Wennberg et al., 2009; Yasaitis et al.,
2009). Other studies of adults with serious illness suggest high-cost
hospital-based treatment is often inconsistent with patient prefer-
ences and may contribute to patient suffering (Pritchard et al.,
1998; Teno et al., 2002, 2007; Yasaitis et al., 2009; Zhang et al.,
2009).
Maximizing value (i.e., increasing quality while reducing costs) in the

care of the highest-cost, seriously ill individuals is a major challenge facing
the nation’s health care system and economy. The greatest strides in improv-
ing the quality and containing the costs of health care for the highest-cost
population will be achieved by focusing research and clinical interventions

APPENDIX E 519
on those with functional debility, chronic illnesses, and patterns of high

health care utilization.
Recommendations
Our recommendations encompass expanding programs that already
work to address high-cost populations; developing new programs or poli-
cies that better match patient needs with services; and considering the most
appropriate target population for interventions based on population size,
health care costs, and potential for health care savings.
Models That Currently Work to Align Patient

Goals with Treatment and Lower Costs
Palliative care A recent study examined the effect on hospital costs of

palliative care team consultations for patients enrolled in Medicaid at
four New York State hospitals and found that, on average, patients who
received palliative care incurred $6,900 less in hospital costs during a
given admission than a matched group of patients who received usual
care. These reductions included $4,098 in hospital costs per admission for
patients discharged alive and $7,563 for patients who died in the hospital.
In addition, palliative care recipients spent less time in intensive care, were
less likely to die in ICUs, and were more likely to receive hospice referrals
than the matched usual care patients (Morrison et al., 2011). Similarly,
a randomized controlled trial of palliative care in addition to usual care
among patients newly diagnosed with stage IV non-small-cell lung cancer
found that those in the intervention (palliative care) group had lower rates
of emergency department visits and hospital admissions within the last 30
days of life, and they were less likely to receive chemotherapy within the
last 14 days and more likely to be referred to hospice 4 days or longer prior
to death. All measures are indicative of higher-quality and lower-cost end-
of-life care (Temel et al., 2010).
Hospice Unlike palliative care, which is appropriate at any stage of serious

illness, hospice is specific to care at the end of life. Hospice enrollment is
restricted to patients with an estimated prognosis of 6 months or less and
requires that patients forgo “curative” or disease-directed treatments. While
extensive data support the high quality of hospice care, the impact of hos-
pice enrollment on health care costs has been debated. A study (Kelley et
al., 2013) using the HRS cohort decedent sample examined the impact on
Medicare expenditures of hospice enrollment 1-7, 8-14, 15-30, and 53-105

days prior to death. Within all periods studied, hospice patients had signifi-
cantly lower Medicare costs and lower rates of hospital and intensive care
use, hospital readmission, and in-hospital death compared with propensity
score-matched nonhospice controls. For example, patients being enrolled in
hospice for 15-30 days resulted in $6,430 in savings to Medicare on aver-
age (see Figure E-20); patients enrolled in hospice for 53-105 days had 9
fewer hospital and 5 fewer ICU days compared with patients receiving usual
care; and patients enrolled in hospice for 53-105 days had 15 percent fewer
hospital readmissions and 40 percent fewer in-hospital deaths compared
with patients receiving usual care.
Similarly, a study (Carlson et al., 2010) that followed more than 90,000
individuals with cancer found that total Medicare costs were significantly
lower for those who remained continuously enrolled in hospice until death
compared with those who disenrolled from hospice. The 11 percent of
patients who disenrolled from hospice were more likely to be hospitalized
(39.8 percent versus 1.6 percent), more likely to be admitted to the emer-
gency department (33.9 percent versus 3.1 percent) or ICU (5.7 percent ver-
sus 0.1 percent), and more likely to die in the hospital (9.6 percent versus
0.2 percent). Patients who disenrolled from hospice died a median of 24
days following disenrollment, suggesting that the reason for hospice dis-
enrollment was not improved health. Hospice disenrollees incurred higher
$7,000
$6,430
$6,000 Hospice
Enrollment
$5,040
$5,000 Range
53-105 Days
$4,000
15-30 Days
$3,000 $2,650 8-14 Days

$2,561
1-7 Days
$2,000
$1,000
$0
Total Medicare Savings
FIGURE E-20 Incremental effect of hospice enrollment on Medicare costs.

SOURCE: A version of this figure appears in Kelley et al., 2013. Reprinted with
permission from Project HOPE/Health Affairs.
Figure E-20

APPENDIX E 521
TABLE E-8 Hospice Enrollment Policies Potentially Restricting Access to

Hospice Care, National Hospice Survey Data, 2008-2009
Percentage of Hospices
Policy (N = 591)
Patient cannot be receiving chemotherapy 61
Patient cannot be receiving total parenteral nutrition 55
Patient cannot be receiving transfusions 40
Patient cannot need an intrathecal catheter 32
Patient cannot continue to receive palliative radiation 30
Patient must have a caregiver at home 12
Patient cannot be receiving tube feeding 8
Hospice has all restrictive enrollment policies 0.8
Hospice has no restrictive enrollment policies 22
SOURCE: Aldridge et al., 2012.
per-day Medicare expenditures than patients who remained with hospice

until death.
Despite the benefits of hospice for patients and families and the poten-
tial cost savings from greater hospice use, there are limitations in attempt-
ing to expand access to hospice care to a wider population. In addition to
the eligibility criteria, which are considered a significant barrier to greater
hospice use, hospices have been found to have varying enrollment policies
aimed at restricting access to hospice care for potentially high-cost patients.
A national survey of the enrollment policies of 591 U.S. hospices found
that 78 percent of hospices had at least one enrollment policy that could
restrict access to care for patients with potentially high-cost medical care
needs, such as chemotherapy or total parenteral nutrition (see Table E-8)
(Aldridge et al., 2012). This is particularly concerning given that the most
complex patients and those with significant functional limitations may be
those most in need of home-based palliative care, and yet hospices that
could potentially provide such care may not be willing to take on such
patients because of cost concerns. Smaller hospices, for-profit hospices,
and hospices in certain regions of the country consistently reported more
limited enrollment policies.
Programs aimed at improving health care services and reducing costs at
the end of life will continue to be limited by physicians’ inability to predict
mortality accurately. In addition, interventions focused only on those near
death will have limited opportunity to impact costs given the limited time
span following intervention. Identifying patients with serious illness—that
is, functional limitations and progressive chronic disease or organ failure—

is the first step in recognizing individuals who may be at risk of high-cost

treatment. The additional factors noted above—race/ethnicity and regional
patterns of care—require further study, but are clearly factors to consider
in deploying limited resources and targeted efforts to improve the quality
of communication and health care decision making.
Program of All-inclusive Care for the Elderly Those individuals eligible for
both Medicare and Medicaid, the “dual-eligibles,” are frequently among
the highest-cost population. One program seeking to address both the care
needs and the growing health care expenses of the dual-eligible population
is the Program of All-inclusive Care for the Elderly (PACE). PACE is a
long-term care delivery and financing program designed to provide com-
prehensive community-based care and prevent unnecessary use of hospital
and nursing home care (Eng et al., 1997). Initial results from the PACE
program in the 1990s demonstrated high-quality care with lower rates of
hospitalization and lower costs. Yet expansion of the PACE model to other
sites has been slow since 1997. Barriers cited include financial constraints,
challenges with enrollment and referral sources, and model characteristics
(Gross et al., 2004).
Open-access hospice programs Open-access hospice is an emerging model

of care with the objective of providing hospice services to patients who need
and want hospice care but may not be eligible under the Medicare eligibility
criteria. Patients receive the medical symptom management and psycho-
social support traditionally available through hospice while simultaneously
retaining access to medical treatments designed to slow or halt their disease
progression (Abelson, 2007). Although patients who receive care through
open-access hospices may be covered by private insurance plans or may pay
for their care out of pocket, initial reports (Abelson, 2007) indicate that the
cost of caring for patients enrolled through open-access policies is generally
absorbed by the hospice provider. Hospices may have financial incentives
to provide care through open-access policies if these patients transition to
hospice care earlier, which prolongs hospice length of stay and is therefore
more profitable for the hospice provider.
The emergence of hospices with open-access policies signals the ability
and willingness of some hospices to provide care outside of the Medicare
hospice benefit and has the potential to improve access to hospice care.
However, a recent study finds that only slightly more than one-quarter of
hospices have such policies, and the majority of these hospice are nonprofit
(Aldridge et al., 2012). This is concerning because it suggests that the open-
access policy innovation may be unlikely to spread, given the substantial
growth in the for-profit hospice sector during the past decade (Thompson
et al., 2012). Between 2000 and 2009, four out of five hospice providers

APPENDIX E 523
that entered the U.S. market were for-profit, and more than 40 percent of
hospices operating in 2000 had changed ownership during that same de-
cade (Thompson et al., 2012).
Hospital at Home® The Hospital at Home program was originally de-

veloped at Johns Hopkins to improve care for individuals with selected
acute illnesses by providing acute hospital-level care in a patient’s home
instead of the hospital. Although the acute hospital is the standard venue
for providing acute medical care for serious illness, it is expensive and may
be hazardous for vulnerable older persons, who commonly experience
functional decline, iatrogenic illness, and other adverse events during hos-
pital admissions. Providing acute hospital-level care in a patient’s home for
carefully selected patients via Hospital at Home has been shown to improve
patient safety, enhance quality, increase efficiency, reduce variations in
practice, and reduce the costs of providing acute care for medical illness for
Medicare beneficiaries (Frick et al., 2009; Leff et al., 2005, 2006). A 2012
meta-analysis of 61 randomized controlled trials found that Hospital at
Home care led to a 19 percent reduction in costs with similar or improved
clinical outcomes, including a 25 percent reduction in readmission rates,
better patient satisfaction, and lower caregiver burden (Cryer et al., 2012).
Dissemination of the Hospital at Home program has been limited,
however, by the lack of a feasible payment model in Medicare. There cur-
rently exists no mechanism in fee-for-service Medicare for reimbursing for
these services; the services do not fit the statutory definition of acute hos-
pital care because they are delivered to a patient outside the physical plant
of the acute care hospital and therefore are not “at hospital” services. In
fact, negative financial incentives exist in that the hospital would not re-
ceive reimbursement for the acute hospital admission. Further, there is no
mechanism for receiving appropriate reimbursement for Hospital at Home
services provided because these acute hospital-level services are well beyond
the scope and intensity of reimbursable Medicare home health care services.
Identification of Target Population for Health

Care Interventions to Reduce Costs
Our findings suggest that identification of the appropriate target popu-
lation for cost-saving interventions is critical given the substantial varia-
tion in the size of different target populations, the costs generated by
different populations, and the proportion of the target population likely
to be impacted by an intervention. Using the statistics we have estimated
for this report, Table E-9 compares three potential target populations and
two hypothetical interventions to highlight the differences in potential
cost savings. We assume that the percentage of the eligible population

524
TABLE E-9 Projected Cost Savings of Hypothetical Interventions by Target Population

Potential Potential
% of Population Reduction in Reduction in
Target Total Costs Impacted by Health Care Costs Health Care Costs
Population* Population Size ($bil) Intervention Intervention (%) ($bil)
Age 65 or older with 22,092,740 $543 A 50 10 $27
chronic conditions and B 50 5 14

All individuals with 44,946,847 $909 A 50 10 45

chronic conditions and B 50 5 23

Individuals at the end 2,468,435 $200 A 50 10 10
of life B 50 5 5
*Target populations are not mutually exclusive.

APPENDIX E 525
that will be impacted by each intervention is 50 percent in all cases and

that the potential reduction in costs is either 10 percent or 5 percent. An
intervention that targets all individuals with chronic conditions and func-
tional limitations (45 million people), impacts half that population, and
reduces costs by 10 percent will theoretically achieve double the reduction
in health care costs compared with the same intervention that targets only
older adults with chronic conditions and functional limitations ($45 billion
versus $27 billion). Our estimates also highlight the fact that interventions
aimed at individuals in their last year of life will generate smaller reduc-
tions in cost savings relative to interventions that target those with chronic
conditions and functional limitations given the significantly smaller size of
the end-of-life population and the limited time frame for cost reduction. In
addition, given the complexity of identifying individuals in their last year
of life relative to identifying individuals with chronic conditions and func-
tional limitations, it is likely that an end-of-life intervention may have an
even smaller effect on costs than shown in the table because it would likely
impact less than 50 percent of the terminal population.
Standardized Identification of Seriously Ill

and Potentially High-Cost Patients
Add a flag to administrative data to identify functional debility Administra-

tive datasets, including Medicare, Medicaid, and private insurer claims, are
key sources of data for health services research and for identifying individu-
als who may benefit from tailored services. As described above, however,
these data are lacking elements critical to the identification of serious ill-
ness. In particular, functional limitations and debility are major predictors
of high total health care spending, yet are not available in the majority of
claims data (Kelley et al., 2011). Therefore, the Centers for Medicare &
Medicaid Services and other major payors should require the collection of
functional status data with all inpatient, SNF, home health, and hospice
claims. Functional status measures are already collected for clinical pur-
poses in all of these settings, and a flag or indicator of functional limitation
could be added as a modifier to claims in these settings. This single addi-
tion to standardized claims requirements would create an opportunity to
study the costs and quality of care for patients with serious illness and to
identify this high-cost and vulnerable population for interventions designed
to improve care.
Use a trigger for screening based on utilization patterns Prospectively

identifying those seriously ill, high-cost patients who do not have func-
tional limitations is an additional challenge for the deployment of targeted

interventions for this group. Therefore, we recommend using an algorithm

based on the presence of selected chronic conditions and defined patterns
of health care utilization to identify individuals for more thorough screen-
ing by a health care professional. For example, individuals with congestive
heart failure who present to the emergency department two or more times
within 1 year would be interviewed. Those with unmet need for health care
and supportive services, uncontrolled symptoms, or excessive treatment or
caregiver burden might qualify for an intervention program designed to
improve care and avoid excessive or unnecessary costs.
Research Required
One of the greatest gaps in the research we have reviewed for this ap-
pendix is the lack of evidence regarding characteristics associated with high
costs in total and the impact of interventions or models of care on total
health care costs. Nearly all of the analyses we reviewed focused on only
one payor—generally Medicare. Although such studies are informative, the
focus on Medicare costs alone has led to the misperception that older adults
and those at the end of life are the primary drivers of health care costs, and
yet when one evaluates total health care costs, it is fairly clear that this is
not the case. A critical next step in research is to evaluate the impact of
various interventions on reducing total health care costs so that programs
and policies implemented across the health care system truly reduce total
costs rather than merely shift costs from payor to payor.
Second, comprehensive data for the study of high-cost, seriously ill
patients are currently unavailable. The standardized collection of functional
status measures and markers of high health care utilization recommended
above would facilitate the study of “real-world” health care programs
for this population. While this would be a critical step forward, rigor-
ous, peer-reviewed research is also needed to promote high-value health
care for this population. For example, a longitudinal prospective cohort
study is needed to evaluate the current patterns of care for seriously ill and
high-cost adults. Briefly, this study would recruit a large, diverse sample of
adults with chronic illness, including those residing in nursing homes, from
geographic regions that exhibit variability across a range of regional char-
acteristics previously shown to be associated with treatment quality and
intensity. Subjects would provide baseline data on a comprehensive range of
demographic, psychosocial, functional, and medical characteristics, as well
as pertinent measures of personal values and beliefs. They would also be
asked to authorize access to their health care claims data from all relevant
payors. The subjects would then be followed with brief yet frequent queries
for signs of new serious illness or progressive debility. Those positively iden-
tified as possibly having serious illness would be interviewed regarding the

APPENDIX E 527
period surrounding the onset of the illness and followed with serial inter-
views throughout the course of their illness. This study would address many
of the current knowledge gaps by enrolling subjects prior to the onset of
serious illness and measuring pertinent factors and potential confounders a
priori. The sample selection would not be dependent upon time of death or
even prognosis, and thereby would capture the full range of serious illness
experiences. The step-wise prospective design would minimize sampling
bias and allow for focused data collection among those with serious illness
when and if it developed while minimizing the study’s burden on subjects.
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Appendix F
Pediatric End-of-Life and Palliative Care:

Epidemiology and Health Service Use
Chris Feudtner, M.D., Ph.D., M.P.H.1,2

Wenjun Zhong, Ph.D.1
Jen Faerber, Ph.D.1
Dingwei Dai, Ph.D.1
James Feinstein, M.D., M.P.H.3
Each year in the United States, just over 45,000 infants, children, and
adolescents die, with another 18,500 deaths among young adults aged 20 to
24. These deaths, while representing only a small proportion of all deaths in
America, are nevertheless vitally important when considering how the U.S.
health care system can better meet the needs of patients approaching the
end of life. Pediatric patients who die are widely acknowledged to present
many challenges that distinguish them from adult patients: they live with
and die from a wide array of often-rare diseases that require specialized
care; the trajectory of their illness experiences is often either much shorter
or far longer than that of adult patients; the child is always cared for in the
context of a family, which also needs support and often care; the mecha-
nism of financing health care in general and palliative care specifically is
different for the young versus older adults; and serious pediatric illness and
death during childhood present emotional and even spiritual challenges to
those who love and care for these patients.
The past decade has witnessed remarkable changes in the care that
can be provided to children with life-threatening conditions and their
families. The field of interdisciplinary pediatric palliative care has become
a well-recognized specialty, with an ever-increasing number of children’s
hospitals creating and developing interdisciplinary pediatric palliative care
teams. Pediatric hospice has likewise advanced with the development and
1 The Children’s Hospital of Philadelphia.

2 The Perelman School of Medicine at the University of Pennsylvania.
3 The Children’s Hospital of Colorado and the University of Colorado School of Medicine.
533

promulgation of practice standards, and with the increased possibility of

pediatric patients with serious illness receiving hospice care concurrent
with other modes of disease treatment. At the same time, all the challenges
outlined above remain, and in certain ways as the opportunities to improve
care for dying children have increased, the urgency of doing so has likewise
increased. This appendix is intended to clarify the epidemiology and health
service use of those receiving pediatric end-of-life and palliative care.
The analysis offered here is much more at the level of populations of
patients as opposed to individual patients. Many of the most important
aspects of pediatric end-of-life care can be understood only with what
might be called the “3-foot view,” obtained by sitting with patients and
parents and care providers and listening to and learning from their experi-
ences. This appendix, by contrast, is based on national mortality and health
service data that offer a 3,000-foot view whereby general trends of disease
and care can be seen, and on clinically detailed hospital data that allow a
more specific 300-foot view of the ways in which groups of patients have
received care.
DEFINITIONS
Before proceeding, we define and discuss key terms and concepts used
throughout this appendix.
End of life: An ambiguous yet important period of time prior to death.

The end of life is perhaps best thought of as beginning when an illness,
injury, or condition progresses to the point where the health status of the
patient is diminished below a level that would make it possible to live in a
way that is meaningful or acceptable to that individual and ends with the
patient’s death. This time period may represent the flash of a second (as is
the case for patients who die instantly from trauma) or extend for several
weeks or longer (as is the case for patients with progressive cancer who
experience a mounting symptom burden).
The start of this time period, when the health status of the patient is
judged to have descended below a threshold beyond which meaningful or
acceptable quality of life is no longer possible, is subjective: seemingly simi-
lar patients and their families will make different judgments about what this
threshold is, and thus when this time period starts. Because the start of this
end-of-life period is a combination of both a biological process and value
judgments, a change in either the patient’s biology (such as physiologic or-
gan failure) or a value judgment about the patient’s health status (such as
living with severe impairments that require technology support) can mark
the beginning of the end of life.
Because this definition requires individual-level clarity about biology

APPENDIX F 535
and value judgments, it cannot be applied in most large population datasets,

which lack such data elements. As an approximation, then, epidemiologic
and health services research can focus on a defined period of time prior to
the day and time of death as the “end of life.” This is a useful and often
illuminating retrospective analytic strategy for population-level studies, but
such uniform definitions should not be confused with the individual-level
definition that is required for individual-level care and that is the required
basis of any prospective study.
Care at the end of life: All forms of care—including medical, surgical,
nursing, psychosocial, spiritual, and hospice—received by patients during
the end-of-life period prior to death.
For the reasons discussed above, this period of time may vary substan-
tially at the individual level across otherwise similar patients. During this
period, moreover, the care received also can vary substantially depending
upon the individual-level goals of care and available resources.
Palliative care: Care for patients with serious illness that is intended to
palliate symptoms, enhance comfort, and improve quality of life.
Palliative care is compatible with other modes of care, such as disease-
directed, cure-seeking, or life-prolonging care. Palliative care for patients
with serious illness can begin long before they enter their end-of-life phase
and can continue after they die, in the form of bereavement care for those
who loved them. Palliative care is not synonymous with end-of-life care
given the longer time frame in which it can be provided and the fact that
the goals of end-of-life care often differ from those that guide palliative
care, such as ongoing health maintenance interventions (for example, vac-
cinations), attendance at school, or involvement in other “normal” family
and life activities.
Serious pediatric illness and life-threatening conditions: Illnesses and
conditions that pose a significant risk of death and typically impose physi-
cal, emotional, and other forms of distressing symptoms upon patients at
some point in the illness trajectory.
The distress caused by serious pediatric illness and life-threatening
conditions can often be alleviated to varying degrees by the receipt of pal-
liative care. Serious pediatric illness and life-threatening conditions are not
prerequisites for the appropriate receipt of pediatric palliative care; patients
with less severe forms of disease can also benefit from such care.
Pediatric age range: The range of ages at which patients with serious
illness and life-threatening conditions are often treated by pediatric-oriented
health care providers and hospitals.
The pediatric age range is not defined by a legal or administrative
threshold (such as the 18th birthday, when individuals are granted some
but not all rights and privileges of adulthood, or the 21st birthday, which
is defined by the National Institutes of Health as the demarcation between

children and adults). Rather, the pediatric age range is observed to ex-
tend from the prenatal period (when consultations about fetal health are
provided by perinatologists) through young adulthood. At various points
during the late teen years or early 20s, patients typically transition to adult-
oriented health care providers (and indeed, for patients cared for by family
physicians, the transition is one not of clinical provider but instead of the
nature of the patient-clinician interaction). For pediatric patients with seri-
ous illness and life-threatening conditions, however, this transition is often
delayed or avoided entirely because of concerns regarding continuity of care
for very ill patients, or the need for specialized knowledge about disease
processes or treatments that resides predominantly in pediatric clinicians
and children’s hospitals. While many of the studies and analyses discussed
in this appendix are restricted to persons and patients below age 18 or 20,
others extend the age range covered to 24 and even beyond, making it pos-
sible to see how the pediatric health care system is used to serve the needs
of certain young adult patients.
DATA SOURCES
In addition to reviewing the published literature, we used the datasets
described below in preparing this appendix.
Mortality Data
Centers for Disease Control and Prevention (CDC) mortality data
(http://wonder.cdc.gov) are produced by the CDC’s National Center for
Health Statistics (NCHS). Currently, the dataset spans 1968 to 2010 and
comprises a county-level national mortality file and a corresponding county-
level national population file.
CDC mortality data based on the NCHS annual detailed mortality
files include a record for every death of a U.S. resident recorded in the
United States. The annual detailed mortality files contain an extensive
set of variables derived from the death certificates. For the Compressed
Mortality data, the source data records are condensed with only a subset
of variables being retained: (1) state and county of residence; (2) year of
death; (3) race; (4) sex; (5) for 1999-2010, Hispanic origin (not Hispanic
or Latino, Hispanic or Latino); (6) age group at death (specific age recoded
to 16 age groups); (7) underlying cause of death (1968-1978 with Inter-
national Classification of Diseases [ICD]-8 codes, 1979-1998 with ICD-9
codes, and 1999-2010 with ICD-10 codes).
For the detailed mortality file or Multiple Cause of Death data, the
data are based on death certificates for U.S. residents. Currently the data
span the years 1999-2010. Each death certificate contains a single underly-

APPENDIX F 537
ing cause of death, up to 20 additional multiple causes, and demographic

data. The number of deaths, crude death rates or age-adjusted death rates,
and 95 percent confidence intervals and standard errors for death rates
can be obtained by place of residence (total United States, region, state,
and county), age group (single year of age, 5-year age groups, 10-year age
groups, and infant age groups), race, Hispanic ethnicity, gender, year, month
and weekday of death, and cause of death (four-digit ICD-10 code or group
of codes). Data are also available for injury intent and injury mechanism,
drug/alcohol-induced causes, and urbanization categories, as well as place
of death and whether an autopsy was performed.
The CDC mortality data are publicly available, and researchers need to
agree to data use restrictions.
National Inpatient and Emergency Department Data

The Kids’ Inpatient Dataset (KID, http://www.hcup-us.ahrq.gov/
kidoverview.jsp) is part of the Healthcare Cost and Utilization Project
(HCUP) sponsored by the Agency for Healthcare Research and Quality
(AHRQ).
The KID, compiled every 3 years, is composed of hospitalization dis-
charge data from approximately 3 million hospitalizations of patients under
age 21. Versions exist for 1997, 2000, 2003, 2006, and 2009. Over the
years, more states have been represented, with data from 44 states be-
ing included in 2009. The sample is constructed in a manner that allows
weighted analyses to generate national estimates, equivalent in 2009 to
approximately 7 million hospitalizations.
The KID contains more than 100 clinical and nonclinical variables for
each hospital stay, including ICD-9, Clinical Modification (ICD-9-CM)
diagnosis and external cause of injury codes; ICD-9-CM and Current Pro-
cedural Terminology, Fourth Edition (CPT®-4) procedure codes; admission
and discharge status; patient demographic characteristics (e.g., sex, age,
urban-rural designation of residence, national quartile of median household
income for patient’s zip code); expected payment source; total hospital
charges; and hospital characteristics (e.g., region, trauma center indicator,
urban-rural location, teaching status).
The Nationwide Emergency Department Sample (NEDS, http://www.
hcup-us.ahrq.gov/nedsoverview.jsp) is also part of the HCUP. It is the larg-
est all-payer emergency department (ED) database in the United States,
yielding national estimates of hospital-based ED visits. In 2011, 28 HCUP
states participated in the 2011 NEDS, providing data on 29 million ED
visits at 951 hospitals.
The NEDS contains clinical and nonclinical variables regarding the
ED encounter as well as linked data for any subsequent hospitalization, as

described above for the KID. The dataset also identifies injury-related ED
visits, including mechanism, intent, and severity of injury; total ED charges
(for ED visits); and total hospital charges (for inpatient stays for ED visits
that result in admission).
Both the KID and NEDS data are available for purchase through the
HCUP Central Distributor. All users of the KID and NEDS must complete
the online Data Use Agreement training, sign a Data Use Agreement, and
send a copy to AHRQ.
Clinically Detailed Administrative Hospitalization Data

The Pediatric Health Information System (PHIS, http://www.chca.com/
index_flash.html) is maintained by the Child Hospital Association (Kansas
City, Kansas). It contains clinically detailed administrative discharge data
on more than 18 million patient encounters from 43 not-for-profit, tertiary
children’s hospitals in the United States, representing most of the major
metropolitan areas nationwide. The data are updated on a quarterly basis.
The quality and reliability of the data are assured through a joint effort
of the Child Hospital Association, the data manager (Thomson-Reuters,
Durham, North Carolina), and participating hospitals. Data are accepted
into the PHIS database only when classified errors occur in less than 2
percent of a hospital’s quarterly data.
The Premier Perspective Database (PPD) is the product of a consor-
tium of U.S. not-for-profit hospitals and health systems, maintained by
Premier, Inc. (San Diego, California) (http://www.premierinc.com). It cur-
rently serves a broad array of academic medical centers, community-based
hospitals, and other health care sites, distributed throughout the urban and
rural United States. The PPD represents hospitals that admit both children
and adults. It compiles hospital data from approximately one-sixth of all
hospitalizations in the United States and contains information on more than
130 million patient discharges. About two-thirds of the member hospitals
update their data monthly, and the rest update quarterly. Upon receiving
data from participating hospitals, the PPD undertakes an extensive multi-
phase data validation and correction process.
PHIS and PPD data elements are largely the same. They include patient
characteristics (e.g., age, sex, admission and discharge dates, All Patient
Refined-Diagnosis Related Groups [APR-DRGs]); diagnoses (e.g., discharge
diagnosis based on ICD-9, order of diagnoses); pharmacy data (e.g., medi-
cations, route, date of administration, pharmacy charge); procedures (based
on ICD-9 codes and date of procedure); supply (supply ordered, day supply
delivered, and supply charge); laboratory tests (test ordered, date labora-
tory result delivered, but not actual results); radiologic imaging (imaging
procedure, utilization of contrast media, date ordered, but not results);

APPENDIX F 539
and clinical services (including date provided and charge for the service).
Researchers interested in using PHIS or PPD data should inquire with the
respective data management organizations.
Other Data Sources and Data Needs

For the sake of thoroughness, we mention other large data sources
not used in this appendix—in particular, Medicaid claims data and data
from either health maintenance organizations (such as Kaiser Permanente
and Group Health Cooperative) or commercial insurance plans. To date,
only a limited number of epidemiologic and health services research studies
regarding pediatric mortality and pediatric end-of-life and palliative care
have used these data sources.
There is a compelling need for data that would provide a longitudinal
“all services” perspective on the health care experience of pediatric patients
with serious illness. By “all services,” we mean to include hospital care;
outpatient care; inpatient and outpatient pharmacy services; and home
nursing, hospice, respite, and other services. Ideally, these data would be
both “all payer” and “all services,” providing a population-level perspec-
tive, so that any differences or confounding bias between patients covered,
for example, by government versus commercial payers could be identified
and accounted for. If not “all payer,” a data source representing the vari-
ous types of payers would be a major advance. Additionally, these data
need to be organized such that individual patient experiences, while being
appropriately deidentified, could be analyzed over time to discern patterns
of care. Many data sources, such as the KID and NEDS, do not enable
such longitudinal analyses. The development of a data source with these
characteristics would represent a major advance for pediatric end-of-life
and palliative care research.
Finally, a data source is needed that includes indicators of the goals of
care, such as the occurrence of a “goals of care” discussion between the
patient/parent and the medical team, or the initiation of “do not attempt
resuscitation” orders, with timestamps regarding when such markers of
goals of care occur. These data would enable analysis of how care changes
in response to such occurrences and whether care provided is congruent
with care goals. Because of practical considerations concerning how such
data on goals of care would be obtained, these data sources would likely
be much smaller than those outlined above.

FINDINGS AND INTERPRETATIONS
Annual Number of Deaths and Trends Over Time

In 2010, there were 45,068 deaths in the United States among persons
aged 19 or younger and another 18,664 deaths among persons aged 20-24.
Combining these groups, there were 63,732 deaths.
Historically, as depicted in Figure F-1a, the number of deaths has
declined remarkably since 1968, especially among those in the infant age
range. This decline in numbers is not due to a decline in the overall size of
the population in this age range; in a corresponding manner, the rates of
death (per person in each age range) have also plummeted (see Figure F-1b).
Age Distribution of Pediatric Deaths

The peak age of pediatric mortality, by far, is during the first year of
life (see Figure F-2a). Accordingly, pediatric palliative care must be designed
to address the needs of neonates and infants, as well as their parents and
families.
FIGURE F-1a Annual number of pediatric deaths in the United States, 1968-2010.
SOURCE: Based on Multiple Cause of Death data 1968-2010 from CDC WONDER
online database.
Figure F-1a
type is outline

FGURE F-1b Annual rates of pediatric deaths in the United States, 1968-2010.
NOTE: Omits infants, whose rate declined from 2,178 to 623 per 10,000 persons.
SOURCE: Based on Multiple Cause of Death data 1968-2010
Figure from
F-1bCDC WONDER online database.

541
0
1
2
3
4
5
6
7
8
9
10
Age 11
in 12
13
Years 14
15
16
17
18
19
20
21
22
23
24
25
0 10 20 30 40
Percentage
FIGURE F-2a Age distribution of pediatric deaths by year of age.

SOURCE: Based on Multiple Cause of Death data 2010 from CDC WONDER
online database.
Figure F-2a
A closer look at the age distribution of pediatric deaths within the first
year of life reveals the prominence of deaths within the first hours of life
(see Figure F-2b). These rapid demises require that palliative care for these
infants and their parents be close at hand, which is to say in places where
infants are born (and antenatally as well, for prenatal visits and potentially
the development of palliative care birth plans) and in newborn nurseries
and neonatal intensive care units.
Causes of Pediatric Death

The single most important cause of pediatric and young adult deaths
is trauma and other external causes, followed by conditions arising in the
perinatal period (as underscored in the previous figures) and congenital
malformations and chromosomal abnormalities (see Figure F-3).
Prevalence of Children with Conditions Warranting Palliative Care

Estimating the prevalence or number of children with conditions war-
ranting palliative care is a difficult task for at least four reasons.

APPENDIX F 543
First hour
Hours 2 to 24
2nd day
3rd day
4th day
5th day
6th day
7th day
Days 8 to 14
Age in Days 15 to 21
Hours, Days 22 to 28
Days, 2nd month
Months 3rd month
4th month
5th month
6th month
7th month
8th month
9th month
10th month
11th month
12th month
0 5 10 15 20 25
Percentage
Source: CDC Mortality Data 2010
FIGURE F-2b Age distribution of infant deaths by month, day, and hours of age.
online database.
Figure F-2b
First, the case definition of “children with conditions warranting pallia-

tive care” is not clear-cut and is based to some degree on perspectives and
values. At one end of a spectrum, case definition might be cases of children
who are actively dying and in pain or suffering because of a symptom other
than pain, and for whom palliative care is clearly needed and warranted
(as part of end-of-life care). Near the middle of the spectrum are cases of
children who are not actively dying but are likely to die in the ensuing
months or next few years as a result of either the progressive worsening of
their underlying condition or their medical fragility (what are termed here
“life-threatening conditions”), and these cases are also likely to benefit
from the receipt of palliative care. Toward the other end of the spectrum
are cases of children who are unlikely to live out a normal life span, can be
expected to live with significant impairments, and may or may not currently
have symptoms that could be ameliorated with palliative care interventions
(so-called life-limiting conditions).
Second, imbedded in the definitions of both life-threatening and life-
limiting conditions are probability statements regarding the prognosis for
how long the children will live and the likelihood that they have symptoms
that could be ameliorated (or more generally, that their quality of life

Certain infectious and parasitic diseases
Conditions originating in the perinatal period
Congenital malformations and chromosomal abnormalities
Diseases of the blood and the immune mechanism
Diseases of the circulatory system
Diseases of the digestive system
Diseases of the ear and mastoid process
Diseases of the eye and adnexa
Diseases of the genitourinary system
Diseases of the nervous system
Diseases of the respiratory system
Diseases of the skin and subcutaneous tissue
Endocrine, nutritional, and metabolic diseases
External causes of morbidity and mortality
Mental and behavioral disorders
Musculoskeletal system and connective tissue
Neoplasms
Other symptoms, signs, and abnormal findings
Pregnancy, childbirth, and the puerperium
0 10 20 30 40 50
Percentage
FIGURE F-3 Major causes of pediatric death.
online database.
Figure F-3

APPENDIX F 545
or that of their parents or family could be improved). How large these

probabilities need to be is largely a value-based decision. For example,
would a patient with the following characteristics qualify as having a life-
threatening condition that warrants palliative care: a combination of a 10
percent chance of dying in the next week, a 50 percent chance of dying
sometime this coming year, and a 20 percent chance that symptom manage-
ment could be improved with a palliative care approach?
Third, it is necessary to clarify the differences between point prevalence
and period prevalence and their relevance for program development and
policy considerations. Point prevalence refers to the number of cases at a
given moment in time. Point prevalence is important for the design of clini-
cal service programs, because it provides guidance on how much capacity
these programs should have to take care of a specific number of patients.
Period prevalence refers to the number of cases over a period of time, most
often 1 year. For pediatric palliative care, period prevalence will be larger
than point prevalence, because during the time period of 1 year, many cases
will have both entered into the case definition (that is, developed the un-
derlying condition) and died. Period prevalence is also relevant to program
and policy development—not to understand the required daily capacity of
palliative care teams but to understand the total palliative care workload
of these teams. To clarify this distinction, consider two simplified scenarios.
First, if the point prevalence were only 1 patient in a particular population
but all the cases cared for by this team died within 1 day, then the annual
period prevalence would be 365. By contrast, if the point prevalence were
20 but patients typically survived for 6 months or longer, then the annual
period prevalence might be only 40. These two scenarios clarify how these
two metrics—point prevalence and period prevalence—capture different
perspectives on the nature and volume of the workload that a palliative
care team would have to manage.
Fourth and finally, there is a relative lack of population-level data.
There are to our knowledge no population-based assessments in the United
States specifically designed to gather this information. A study based on pri-
mary data collection in the region around Bath, England, found an annual
period prevalence of 1.2/1,000 children for conditions with a 50 percent
chance or greater of causing death before age 40 while omitting patients
with cancer or conditions that typically cause death within a month (Lenton
et al., 2001). Another study, of all of England, based on analysis of health
claims records and identifying cases on the basis of having diagnostic codes
for conditions that are often the underlying conditions in patients receiving
palliative care services, found an annual period prevalence of 3.2/1,000
children (Fraser et al., 2012).
With these caveats in mind, what can be offered as a range of esti-
mates regarding the point and annual period prevalence of children with

conditions that warrant palliative care? At one extreme, the data presented
above regarding both the causes of death and age at the time of death
strongly suggest that the point prevalence of pediatric patients living with
life-threatening conditions on any given day is approximately equal to the
annual number of deaths, or about 45,000. Why? Consider first the high
proportion of all pediatric deaths represented by neonatal deaths and the
short life span of many infants who die (1 day or 1 week). Consider second
the high proportion of deaths beyond the neonatal period due to trauma
(which often results in death immediately or within hours). Together, as
stated above, these two observations imply that the point prevalence of in-
fants and children living with life-threatening and life-shortening conditions
may not be more than the annual cumulative incidence of pediatric deaths.
The other end of the range of estimates—but also shifting from point preva-
lence to annual period prevalence—would be based on the English study of
claims data, applying an annual prevalence of 3.2/1,000 to the population
of infants, children, and adolescents in the United States (73.9 million) to
estimate 236,480 potential pediatric palliative care patients over the course
of 1 year (while also acknowledging that patients with these conditions
might not warrant or want palliative care). A mid-range estimate would be
based on the Bath study, adjusting a point prevalence of 1.2/1,000 upward
by 100 percent to account for the omission of cancer patients and patients
who died from acute conditions that typically cause death within 1 month,
and so apply an estimated annual period prevalence of 2.4/1,000 to the
U.S. pediatric age population. This approach would yield an annual period
prevalence estimate of 177,360 children (but acknowledging that only 60
percent of the patients identified in the Bath study had pain).
Complex Chronic Conditions as a Cause of Pediatric Death

Amid the vast diversity of causes of pediatric deaths, a distinction can
be drawn between life-threatening conditions that arise suddenly and most
often unexpectedly (such as extreme premature birth, serious infections,
and trauma) and complex chronic conditions (CCCs) that can be lethal.
While many pediatric deaths are unexpected, those deaths attributed to
these chronic conditions may have been foreseeable, providing an oppor-
tunity to provide palliative care and plan for end-of-life care.
CCCs have been defined as conditions likely to last 6 months or longer
(unless death intervenes) and requiring care by pediatric subspecialists and
often a period of hospital care. In turn, this definition can be used to classify
ICD-9 codes indicative of CCC status, subcategorizing these diagnoses into
organ- or system-based groups (Feudtner et al., 2000).
Among pediatric patients who died with a CCC diagnosis, the modal
CCC categories are neonatal diagnoses, followed by cardiovascular and

APPENDIX F 547
Cardiovascular
Congenital or Genetic
Gastrointestinal
Hematologic/Immune
Malignancy
CCC
Category Metabolic
Neonatal
Neurologic
Renal
Respiratory
Technology Dependent
0 2 4 6 8
Percentage of All Deaths ≤25 Years
FIGURE F-4 Pediatric deaths involving complex chronic conditions.

online database.
Figure F-4
neurologic conditions, and then malignancies (see Figure F-4). In other
work, we have found that the proportion of all deaths due to CCCs is
increasing because of the sharp declines in deaths due to trauma and other
acute causes and the relative stability of rates of deaths due to CCCs.
Multiple Complex Chronic Condition Categories and Pediatric Deaths

In previous research, pediatric patients with a higher number of differ-
ent categories of CCCs (e.g., cardiovascular and respiratory CCCs) have
been found to have a heightened risk of readmission, more extensive health
care utilization, and death. Among all pediatric deaths, one-third have
CCCs, with 4.5 percent having two different categories of CCCs and 0.57
percent having three or more different categories (see Figure F-5).
Locations of Pediatric Deaths

Among all pediatric deaths (including trauma), the most common place
of death for all persons aged 14 and younger is the hospital; this is the case

0 67
1 28
Number
of
CCC
Categories
2 4.5
3+ .57
0 20 40 60 80
Percentage of All Pediatric Deaths
FIGURE F-5 Pediatric deaths involving multiple complex chronic conditions.

online database.
Figure F-5
especially for infants (74 percent of whom die in hospitals) (see Figure F-6).
EDs are also important sites of dying, as are homes.
Trajectories or Patterns of Experience of the Pediatric Dying Process

Based on the preceding data, as well as clinical experience, pediatric
patients who die typically experience one of four different patterns of ill-
ness trajectory: (1) sudden death (e.g., trauma, meningo-coccemia), (2) a
steady inexorable decline (e.g., unresectable brain tumor or Tay-Sachs), (3)
fluctuating decline (e.g., progressive diseases with intermittent crises, such
as worsening heart failure), and (4) constant medical fragility (e.g., “static”
neurologic impairment predisposing to crises due to infections or metabolic
decompensations) (see Figure F-7).
Good end-of-life care (illustrated by the shifts in the trajectories for
panels B, C, and D in Figure F-7, from black into the purple trajectories)
aims to improve quality of life and to prevent it from becoming so domi-
nated by suffering that the patient descends to being in a worse-than-dead

APPENDIX F 549
FIGURE F-6 Locations of pediatric deaths by age range.

online database.
Figure F-6

Quality
of Life
Quality
of Life
FIGURE F-7 Trajectories of pediatric dying.

SOURCE: A version of this figure appears in Feudtner, 2007. Reprinted with per-
mission from Elsevier. FGigure F-7
state (illustrated by the trajectories in the figure that fall below the grey
line at zero quality of life). Interventions to improve or safeguard qual-
ity of life may have no impact on the patient’s life span (as illustrated in
panel B) or may shorten life span (panel C, illustrating the often-discussed
“double effect” whereby medications designed to improve comfort may
shorten life span) or lengthen life span (panel D, the “win-win effect”).
Data with which to estimate which of these possibilities is most common
are not available.
Although there are no precise epidemiologic data regarding the propor-
tion of deaths that follow each trajectory, because many pediatric deaths
follow trajectories A, C, or D, predicting death is either not appropriate (for
trajectory A) or exceedingly imprecise (trajectories C and D). Furthermore,
for trajectories C and D, patients and parents have often experienced previ-
ous serious medical crises from which the patient survived, which affects
(accurately or inaccurately) the way they perceive a current health crisis.

APPENDIX F 551
Deaths Attributed to Complex Chronic

Conditions and Locations of Death
Again focusing on pediatric deaths attributed to CCCs (which is to say,
deaths that may have been foreseeable and due to long-standing medical
illness as opposed to trauma or sudden infectious illnesses), the number of
such deaths declined overall from 1989 to 2006 (as shown previously for
all pediatric deaths). Here we note a change in the locations of these deaths
over time, with an increase in the number of deaths occurring at home (see
Figure F-8).
Rising Proportion of Home Deaths Among Deaths

Attributed to Complex Chronic Conditions
The decline in deaths occurring in hospitals, combined with the rise
in deaths occurring at home, has resulted in a significant increase in the
proportion of all pediatric CCC-related deaths occurring at home (see Fig-
ure F-9). This increase may be due to a desire to have home be the place
of death or to inadvertent deaths occurring to children who are medically
FIGURE F-8 Locations of death among deceased pediatric patients with complex
chronic conditions.
SOURCE: Based on Multiple Cause of Death data from CDC; see Feudtner et al.,
2007.
Figure F-8
Bitmapped

FIGURE F-9 Home deaths among pediatric patients with complex chronic condi-
tions who died.
2007.
Figure F-9
Bitmapped
fragile as a result of illness or dependence upon medical technology. Either
way, this shift in location of death underscores the importance of having
sufficient community-based capacity to provide care in the home for pedi-
atric patients with CCCs, in the mode of either hospice or home nursing
services, as well as the need for community-based bereavement services for
families (parents, siblings, and others).
Rising Proportion of Home Deaths Beyond Infancy for

Deceased Patients with Complex Chronic Conditions
The rise in the proportion of CCC-associated deaths that have occurred
at home is observed for most of the CCC categories, with a much larger
proportion and increase over time seen in patients beyond infancy (see
Figure F-10).
Differences Across Race and Ethnicity in Location of Death

Across race and ethnicity categories, there are striking differences in the
probability of dying at home among pediatric deaths attributed to CCCs

APPENDIX F 553
FIGURE F-10 Proportion of home deaths by age group for different complex

chronic condition categories.
2007.
Figure F-10
Bitmapped
(see Figure F-11). In other work focused on hospital care received by dying
pediatric patients, we have not found such differences. This suggests that
once a pediatric patient is hospitalized, care is fairly uniform across race
and ethnicity categories, but access to home-based care (hospice or home
nursing) may be limited because of either referral or supply or as the result
of a culturally based preference not to be at home when death occurs.
State-Level Variation in Race and Ethnicity

Disparities in Location of Death
The differences noted above also appear to depend upon where indi-
viduals reside. Examining the five largest states of residence in the United
States (as illustrated in Figure F-12), marked state-level variation is evident
even after stratification for specific underlying causes of death and specific
age ranges: among these states, the baseline rates of death at home within
each stratified group differ significantly. New York is observed to have had
the lowest proportion of home deaths for all groups. White/non-Hispanic

FIGURE F-11 Proportion of home deaths by age group for different race and
ethnicity categories.
Figure
SOURCE: Based on Multiple Cause F-11
of Death data from CDC; see Feudtner et al.,
2007.
Bitmapped
children are observed to be more likely to have died at home than black/
non-Hispanic and white/Hispanic children (with the exception of Florida
for deaths due to neurologic CCCs among those aged 10-19). This geo-
graphic variability suggests that access to home-based services, in addition
to any potential difference across race/ethnicity in preferences regarding
palliative or end-of-life care, may be a major influence generating these
differences.
Hospitalization During the Last Year of Life for

Decedents with Complex Chronic Conditions
Hospitals are operationally important places in which to locate pedi-
atric palliative care services. In multiple studies, the majority of patients
whose deaths were attributed to a CCC were noted to have been hospi-
talized at some point during the last year of life. A study of Washington
State data found that among deaths of pediatric patients with CCCs, 100
percent of infants and 84 percent of patients older than 1 year of age had
been hospitalized prior to death, and many of these hospitalizations had

APPENDIX F 555
FIGURE F-12 State-level variation regarding location of death among patients with
complex chronic conditions.
SOURCE: Based on Multiple Cause Figure
of DeathF-12
data from CDC; see Feudtner et al.,
2007. Bitmapped

occurred months prior to death (Feudtner et al., 2003). Hospital-based pe-

diatric palliative care teams are thus positioned to introduce these patients
and their parents to palliative care during a hospitalization, including but
not limited to terminal hospitalizations.
At the same time, most patients spent the majority of their time outside
of the hospital. From the same study mentioned above, focusing on chil-
dren with CCCs who were 1 year of age or older at the time of their death,
Figure F-13 shows the day-by-day prevalence of hospitalization among this
population of patients: as patients move closer to the time of death, a larger
proportion are residing in the hospital, but not until the final days are half
of the patients hospitalized. Thus, a robust system of pediatric palliative
care should be able to provide services both in hospitals and in homes. Be-
cause the vast majority of time during the last year of life is spent outside
of hospitals, mostly at home (and settings such as schools), the development
of community-based hospice or palliative care services for the delivery of
care in homes is vitally important.
Proportion Hospitalized
Days Prior to Death
FIGURE F-13 Proportion hospitalized during the last year of life for pediatric pa-
tients >1 year of age with complex chronic conditions.
SOURCE: Based on data from Washington State; see Feudtner et al., 2003.
Figure F-13
Bitmapped
APPENDIX F 557
Terminal Hospitalization Lengths of Stay

Among pediatric patients who die during what proves to be a terminal
hospitalization, the typical length of stay is a week or less, but with a very
long tail of prolonged lengths of stay (see Figure F-14). Length of terminal
hospitalizations does not vary substantially by patient age or race/ethnicity,
but does vary based on the underlying diagnoses: these long lengths of stay
are most common among patients with multiple CCCs, diagnosed either
during that terminal hospitalization or during a previous hospitalization.
Intensity and Invasiveness of Terminal Hospitalization Care

Given that hospitals are where most pediatric deaths occur, examining
the interventions received during terminal hospitalizations helps in assem-
bling a portrait of pediatric end-of-life care (see Figure F-15). Most hospital
deaths occur in intensive care unit (ICU) settings. Patients with no CCCs
either quickly enter the ICU setting or remain outside of the ICU setting
for the duration of their hospitalization. By contrast, patients with CCCs
FIGURE F-14 Length of stay among pediatric patients who died in hospitals.
SOURCE: Based on PHIS and Premier data, 2007-2012.
Figure F-14

appear to often decompensate during the course of a longer hospitalization

and frequently require escalation of interventions and repeated transfers
between the floor and the ICU. A similar pattern is observed for starting
mechanical ventilation and undergoing the first surgery of a hospitalization
FIGURE F-15 Procedures to which pediatric patients who died in hospitals were
exposed.
NOTE: ECMO = extracorporeal membrane oxygenation.
SOURCE: Based on PHIS and PremierFigure F-15
data, 2007-2012.

APPENDIX F 559
(both of which are common interventions), as well as for the first episode
of renal dialysis, cardiopulmonary resuscitation (CPR), or extracorporeal
membranous oxygenation (ECMO).
Emergency Departments and Pediatric Deaths

As noted above, in addition to homes and hospitals, EDs are impor-
tant locations of pediatric end-of-life care, with approximately 22 percent
of pediatric deaths occurring in EDs in 2010 (Figure F-16 shows the age
distribution of these deaths). Among an estimated (weighted sample) 29.6
million ED visits by pediatric patients (with a mean charge of $1,278), there
were 9,699 deaths in EDs (with mean charges of $4,765), with another
4,449 deaths during a subsequent hospitalization (with mean ED charges
for this group of $3,019). Among the ED deaths, 9.3 percent had CCCs.
Among the ED patients who subsequently died in the hospital, 45 percent
had CCCs. This suggests that most rapid demises that occur in EDs are due
to acute processes, such as trauma or unexpected overwhelming infection,
while patients with serious CCCs are stabilized in EDs and admitted to the
FIGURE F-16 Age distribution of pediatric deaths in emergency departments.

SOURCE: Based on data from NEDS, 2010.
Figure F-16
Type is outline

hospital. Importantly, the care received by patients who died in EDs has
not been characterized.
Pain and Symptoms Among Pediatric Patients

Receiving Pediatric Palliative Care
In 2008, a 1-year cohort study conducted by six major hospital-based
pediatric palliative care programs described the characteristics of pediatric
patients receiving palliative care services (Feudtner et al., 2011). These pa-
tients experienced a broad array of impairments and symptoms, the most
common being cognitive and speech impairment, fatigue and sleep prob-
lems, enteral intake, seizures, somatic pain, and dyspnea. While pain and
dyspnea are prominent symptoms reported near the end of life for patients
with cancer, this population includes many patients who are not near the
end of life and who have conditions other than cancer, including many
with neurologic or genetic conditions. Pediatric palliative care symptom
management thus requires an extensive toolkit and considerable expertise.
Unfortunately, research regarding pediatric symptom management is woe-
fully lacking. This may be the single most important research priority.
Patterns of Survival Among Pediatric Palliative Care Patients

Pediatric patients receiving palliative care services have long (relative
to common assumptions) life expectancies. In the cohort of 515 patients
discussed in the previous section, 1-year survival was above 70 percent
(Feudtner et al., 2011). This relatively long duration of survival (compared
with adult patients receiving palliative care) means that pediatric palliative
care services provide chronic care to patients with serious illness and are
not limited to end-of-life care. Because many of these patients are hospital-
ized repeatedly, this also means that pediatric palliative care services often
have very high daily census levels, consisting of new and ongoing patients.
Conceptual Models of Pediatric Palliative Care

Based on the findings presented thus far, with pediatric palliative care
revealed as chronic care for pediatric patients with a broad array of serious
and often complex illnesses, the ideal model of pediatric palliative care is
not incompatible with so-called curative care (which often is not capable
of effecting a cure as much as substantial life extension), nor does curative
care have to be titrated down for palliative care to be titrated up (see Fig-
ure F-17). Instead, pediatric palliative care seeks to promote several modes
of care simultaneously, including cure-seeking or life-extending care and

APPENDIX F 561
quality-of-life and comfort-maximizing care, as well as support for family

members and for health care staff.
Core Tasks of Pediatric Palliative Care

The core tasks of pediatric palliative care include the provision of effec-
tive interventions to enhance the well-being or comfort of patients, family,
and staff; to assist in the logistical coordination of care across a variety of
settings, including the hospital, home, and other facilities; and to support
problem solving and decision making for patients, their surrogate decision
makers, and health care staff (see Figure F-18).
1. Incompatable Domains of Curative Versus Palliative Care:
Curative Care
Palliative Care
2. Competing Domains of Curative Versus Palliative Care:
Curative Care
Palliative Care
3. Complementary and Concurrent Components of Care:
Cure-Seeking Care
Life-Extending Care
Quality-of-Life and Comfort Maximizing Care
Family Supportive and “Grief and Other Emotions” Care
Health Care Staff Supportive and “Grief and Other Emotions” Care
TIME
D ia gnos is D e a th
FIGURE F-17 Palliative care as patient-centered complementary and concurrent

modes of care.
mission from Elsevier.

FIGURE F-18 Pediatric palliative care’s three major tasks.

mission from Elsevier.
Hospital-Based Pediatric Palliative Care Programs

Hospital-based pediatric palliative care programs are more common
than was previously the case, arising across the United States. Figure
F-19 shows programs identified by a 2012 survey of children’s hospitals
(Feudtner et al., 2013).
Establishment of New Hospital-Based Pediatric Palliative Care Programs

Most hospital-based pediatric palliative care programs are of recent
vintage, having been established sometime after 2005; 12 new programs
were established in 2008 alone, and another 10 were created in 2011
(Feudtner et al., 2013). These programs typically require substantial finan-
cial support from their hospital, given the relatively low rates of reimburse-
ment for the kinds of services they provide. Ensuring the financial security
of these programs is a major priority.

APPENDIX F 563
FIGURE F-19 Locations of hospital-based pediatric palliative care programs.

SOURCE: Feudtner et al., 2013. Reproduced with permission from Journal Pediat-
Figure
rics, Vol. 132, Page 1065, Coypright © F-19
2013 by the AAP.
Bitmapped
Staffing of Hospital-Based Pediatric Palliative Care Programs

Hospital-based pediatric palliative care programs are remarkably di-
verse in terms of staffing. Many programs subsist with a minimal staff, most
commonly having less than a full-time equivalent (FTE) of physician time
(Feutner et al., 2013). In the above-referenced survey of children’s hospitals,
more than half of surveyed programs had only one physician; of programs
with more than one physician on staff, many had total physician staffing
of less than one full-time equivalent. Staffing by nurses ranged from 0 to
6.6 FTE (with a mean overall FTE 0.8, and for advanced practice nurses
in particular, a mean FTE of 0.4). While 66 percent of programs reported

having a social worker, the mean social work FTE was only 0.29. All
other members of the interdisciplinary team (including chaplains, child life
specialists, bereavement specialists, music and art therapists, and psycholo-
gists) had mean FTE levels of 0.16 or less. This survey also demonstrated
substantial differences in the clinical services provided by these programs.
A major priority for both research and program development is to define
and advance hospital-based pediatric palliative care program standards.
Hospital Charges for Pediatric Hospitalizations

We now turn to the financial aspects of pediatric end-of-life care.
Ideally, we would be able to analyze cost data, including costs borne by
patients, families, hospitals, and payers, but such data do not exist. We
therefore focus here on hospital charges to illustrate and examine certain
key issues, believing that this analysis can illuminate the financial aspects
of pediatric end-of-life care.
We start with all pediatric hospitalizations. Among 8.6 million pediat-
ric hospitalizations (which includes newborns) from 2007 to 2012 in the
PHIS and Premier data, the median total charge was $8,167, and the mean
was $28,654. The distribution of these charges fits the “Pareto principle”
power law distribution almost exactly (see Figure F-20), with 78 percent
of all hospital charges being concentrated among the top 20 percent of
hospitalizations. Among the 0.5 percent of hospitalizations that ended with
the death of the patient, the median charge was $68,279, and the mean
was $290,416.
Correlation of Hospital Charges with Length

of Stay in Children’s Hospitals
Among all the above pediatric hospitalizations, the median length of
stay was 2 days, with a mean of 3.6 days. The range of length of stay was
from 0 to 877 days, with the 99th percentile at 35 days. Length of stay is
the primary driver of total charges, with a correlation of 0.75 (see Figure
F-21).
Long Lengths of Stay and Large Average Charges in Children’s Hospitals

Reinforcing the fact that length of stay is a key driver of pediatric
hospitalization charges, the average length of stay skyrockets among those
patients with the largest hospital charges (see Figure F-22).

APPENDIX F 565
Cumulative Distribution of Total Charges
100
80
60
Proportion
of All
Charges
40
20
0
0 20 40 60 80 100
Percentile of Patients (Sorted by Charges)
FIGURE F-20 Cumulative distribution of charges among hospitalized pediatric

patients.
SOURCE: Based on data from PHISFigure
and the F-20
Premier Perspective Database.
Prognosis and Predicted Probability of Death

Among Hospitalized Pediatric Patients
Based on previous work, we implemented a prediction of mortality
model, which we used as a tool for the subsequent analysis. In these data,
the model is reasonably well calibrated. For example, patients with a pre-
dicted probability of dying of 0.5 were observed to have a proportion of
death between 0.3 and 0.4 (see Figure F-23). Note that the calibration curve
demonstrates that the predicted probability is biased upward, with those
with the highest predicted probabilities of death never having an observed
proportion of death as high as the predicted values.
Average Hospital Charges Across Predicted Probability of Death

Hospital charges are also associated with the probability of death, in a
U-shaped function: some patients who die very soon after hospitalization
incur relatively small charges, and patients with the largest charges have
a much higher than average probability of having died (see Figure F-24).

2500000
2000000
Hospital 1500000 Correlation=0.75

Charges
(Local
LOS
Average) 1000000
500000
0
0 30 60 90 120 150 180
Length of Stay (Days)
FIGURE F-21 Correlation of charges with length of stay (LOS) in children’s

hospitals.
Figure F-21
Note, though, that only 6 percent of those patients with the largest charges
died. Stated differently, large hospital charges overwhelmingly are for chil-
dren who survive.
Hospital Charges Across the Range of Predicted Probability of Death

If pediatric palliative care were to focus just on those patients with the
highest probability of dying during that hospitalization, and this threshold
could be set at a 50 percent predicted probability of dying (which, as was
seen earlier, would translate into a slightly lower observed probability of
dying), then the case mix would have a higher average hospital charge
(approximately $500,000). These patients, though, account for only 4.7
percent of all charges (see Figure F-25). Furthermore, given that these
large charges are accumulated over very long lengths of stay and that the
probability of dying may have risen dramatically during the course of the
hospitalization, the ability of pediatric palliative care to curtail these aggre-
gate costs to a degree that would matter to the overall pattern of pediatric
hospital expenditures is likely quite limited.

APPENDIX F 567
Length of Stay Across Range of Charges
60
40
Length
of Stay
(Local
Percentile
Average)
20
0
0 20 40 60 80 100
FIGURE F-22 Mean length of stay across the range of charges for patients in chil-
dren’s hospitals.
Figure F-22
This is not to say, however, that hospital-based pediatric palliative care

is not cost-effective. With most pediatric palliative care programs requir-
ing operating budgets of approximately $2 million per year, curtailing the
length of stay of even a few long-stay terminal hospitalizations per year (or
preventing terminal hospitalizations in the first place) would offset operat-
ing expenses.
Concurrent Care and Studies of Cost Implications

Beyond the analysis just presented, we used the following keywords
and their combinations to search for publications on health care cost sav-
ings of pediatric palliative or hospice care: “pediatric or child,” “palliative
or hospice,” “costs or (cost effectiveness) or spending or expenditure or
savings,” and “health care.” We also checked the citations of some publi-
cations to look for other potential papers. This search revealed only three
publications that focus on children and compare the cost before and after
the initiation of palliative care:


Observed Probability of Death Across
Range of Predicted Probability of Death
.8
.6
Observed
Probabililty
of Death .4
(Local
Average)
.2
0
0 .2 .4 .6 .8 1
Predicted Probability of Death
FIGURE F-23 Calibration of the predicted to the observed probability of death.

Figure
Probability F-23 Across Range of Charges
of Death
6
Percentage
That Died
0
0 20 40 60 80 100
FIGURE F-24 Predicted probability of death across the range of hospital charges.
Figure F-24

APPENDIX F
Average Total Charges Across 569
Range of Probability of Death
5
$86.8B Total $4.3B Total
4
Total 3
Charges
(Million $)
2
0
0 .2 .4 .6 .8 1
Probability of Death
Charges Polynomial Curve

95% CI
Note: Total dollar sums are for patients who could be fitted in the model.
FIGURE F-25 Among patients in children’s hospitals, the typical individual total
charge across the range of the predicted probability of death.
NOTE: Total dollar sums are for patients who could be fitted in the model.
• A small study (N = 66) from a children’s hospital in Canada re-

ports that providing respite care resulted in a mean decrease of
$4,251.95 per month per patient (Pascuet et al., 2010).
• A California project shifted palliative care from hospital settings
to in-home community-based care. The result was cost savings of
$1,677 per child per month on average—an 11 percent decrease
in spending on a traditionally high-cost population (Gans et al.,
2012).
• Analyses involving data on Florida Medicaid children found that
FIGURE F-25
pediatric hospice users had higher inpatient (2.5 times), outpatient
(1.1 times), ED (1.9 times), and pharmacy (2.3 times) expendi-
tures than non-hospice users (a finding perhaps due to residual
confounding by indication, whereby patients with greater ongoing
need are referred to hospice more often than otherwise similar pa-
tients with less need). Black non-Hispanic and Hispanic children
and children of other races incurred $730 to $880 less in hospice
expenditures than whites (Knapp et al., 2009).
These mixed findings regarding the impact of pediatric palliative or

hospice care on health care expenditures are consistent with the findings
of a recent Cochrane Database Systematic Review focused on adult studies

regarding the impact of home-based services. While receipt of such services

is warranted based on symptom management and preferred place of dying,
the cost implications are mixed (Gomes et al., 2013).
To assess the cost impact of pediatric palliative or hospice services,
studies will have to ensure that any change in expenditures before and
after exposure is due to exposure to the service, and not to a temporally
confounded choice to pursue palliative or hospice care at the same time
as the choice is made to forego or avoid further hospital-based or highly
invasive forms of care.
Other Key Considerations Regarding Charge/Cost-

Focused Evaluations of Pediatric End-of-Life Care
First, as argued above, while there may be greater certainty as death
draws near (within hours or days), the potential cost savings that could
arise from such prognostic knowledge would affect expenditures only from
that point forward. And because large hospital bills are built on long
lengths of stay, the marginal impact on the overall health care cost for hos-
pital care may be more limited than is commonly hoped.
Second, many of the pediatric patients who consume the most resources
are disabled, and they are vulnerable because of both disability-associated
stigma and the impoverishment of families that can result from having a
medically complex patient in the family. These patients are also protected
by law from discrimination.
Gaps in Knowledge
Critical gaps exist in the knowledge and evidence base regarding many
aspects of pediatric palliative care, including the follow six priority areas:
1. Comparative effectiveness studies of

• Symptom management approaches
– Pharmacologic
- Effectiveness of different medications and use of
medications
- Potential problems of polypharmacy and drug-drug
interactions
– Nonpharmacologic
• Different forms of providing decision support to patients and
their surrogate decision makers
– How to communicate clearly regarding the patient’s clinical
situation

APPENDIX F 571
– How to communicate effectively regarding potential benefits

and harms of medical interventions
– How to solicit, examine, and potentially adapt goals of care
over time
– How to support emotional as well as cognitive processing
of this information
– Different bereavement support interventions for family
members and community peers
2. Descriptions of care
• Received through hospice services and home nursing services,
individually and in the concurrent care model
• Received in different settings, including EDs, outpatient facili-
ties, and long-term care facilities
3. Cohort studies examining the effect of receipt of palliative or hos-
pice care
• On patient-reported outcomes
• On proxy reports by parents or others regarding patient
experience
• On outcomes defined using large clinically detailed datasets
4. Well-designed cost analyses regarding
• The care received by pediatric patients with serious illness or
complex chronic conditions
• The impact of receipt of palliative care or hospice services
5. Studies of the impact of having a child with serious illness, while
alive and after death
• On parents
• On siblings
• On other family members, such as grandparents
• On the patient’s peer network of friends in school and elsewhere
• Whether these impacts are modified if the patient or family is
exposed to palliative or hospice care services
6. Studies of hospital-based pediatric palliative and community-based
pediatric hospice services
• How to best staff these services
• How to optimize interdisciplinary team function
• Best management practices
• Financing challenges and best practices

REFERENCES
Feudtner, C. 2007. Collaborative communication in pediatric palliative care: A foundation for
problem-solving and decision-making. Pediatric Clinics of North America 54(5):583-607.
Feudtner, C., D. A. Christakis, and F. A. Connell. 2000. Pediatric deaths attributable to com-
plex chronic conditions: A population-based study of Washington State, 1980-1997.
Pediatrics 106(1, Pt. 2):205-209.
Feudtner, C., D. L. DiGiuseppe, and J. M. Neff. 2003. Hospital care for children and young
adults in the last year of life: A population-based study. BMC Medicine 1(1):3.
Feudtner, C., J. A. Feinstein, M. Satchell, H. Zhao, and T. I. Kang. 2007. Shifting place of
death among children with complex chronic conditions in the United States, 1989-2003.
Feudtner, C., T. I. Kang, K. R. Hexem, S. J. Friedrichsdorf, K. Osenga, H. Siden, S. E. Friebert,
R. M. Hays, V. Dussel, and J. Wolfe. 2011. Pediatric palliative care patients: A prospec-
tive multicenter cohort study. Pediatrics 127(6):1094-1101.
Feudtner, C., J. W. Womer, R. Augustin, S. S. Remke, J. Wolfe, S. Friebert, and D. E. Weissman.
2013. Pediatric palliative care programs in children’s hospitals: A cross-sectional national
survey. Pediatrics 132(6):1063-1070.
Fraser, L. K., M. Miller, R. Hain, P. Norman, J. Aldridge, P. A. McKinney, and R. C. Parslow.
2012. Rising national prevalence of life-limiting conditions in children in England. Pe-
diatrics 129(4):e923-e929.
Gans, D., G. F. Kominski, D. H. Roby, A. L. Diamant, X. Chen, W. Lin, and N. Hohe. 2012.
Better outcomes, lower costs: Palliative care program reduces stress, costs of care for
children with life-threatening conditions. Policy Brief (UCLA Center for Health Policy
Research (PB2012-3):1-8.
Gomes, B., N. Calanzani, V. Curiale, P. McCrone, and I. J. Higginson. 2013. Effectiveness and
cost-effectiveness of home palliative care services for adults with advanced illness and
their caregivers. Cochrane Database of Systematic Reviews 6:CD007760.
Knapp, C. A., E. A. Shenkman, M. I. Marcu, V. L. Madden, and J. V. Terza. 2009. Pediatric
palliative care: Describing hospice users and identifying factors that affect hospice ex-
penditures. Journal of Palliative Medicine 12(3):223-229.
Lenton, S., P. Stallard, M. Lewis, and K. Mastroyannopoulou. 2001. Prevalence and morbid-
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Health and Development 27(5):389-398.
Pascuet, E., L. Cowin, R. Vaillancourt, W. Splinter, C. Vadeboncoeur, L. G. Dumond, A. Ni,
and M. Rattray. 2010. A comparative cost-minimization analysis of providing paediatric
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Healthcare Management Forum 23(2):63-66.

Appendix G
Committee Biographies
Philip A. Pizzo, M.D. (Co-Chair), served as dean of the School of Medicine

and Carl and Elizabeth Naumann professor at Stanford University School
of Medicine from 2001 to 2012. He is currently founding director of the
Stanford Distinguished Careers College and David and Susan Heckerman
professor of pediatrics and of microbiology and immunology at Stanford.
Before joining Stanford, he was physician-in-chief of Children’s Hospital
in Boston and chair of the Department of Pediatrics at Harvard Medical
School from 1996 to 2001. Dr. Pizzo is recognized for his contributions as
a clinical investigator, especially in the treatment of children with cancer
and HIV. He devoted much of his medical career to the diagnosis, manage-
ment, prevention, and treatment of childhood cancers and the infectious
complications that occur in children whose immune system is compromised
by cancer and AIDS. He and his research team pioneered the develop-
ment of new treatments for children with HIV infection, lengthening and
improving their quality of life. Dr. Pizzo served as head of the National
Cancer Institute’s (NCI’s) infectious disease section, chief of its pediatric
department, and acting scientific director for its Division of Clinical Sci-
ences between 1973 and 1996. He was elected to the Institute of Medicine
(IOM) in 1997 and served on the IOM Council from 2006 to 2012. He
has held numerous leadership positions, including chair of the Council of
Deans of the Association of American Medical Colleges, and has received
numerous honors and awards for his work and contributions. He received
his undergraduate degree from Fordham University and his M.D. from the
University of Rochester School of Medicine. He completed an internship
and residency at Children’s Hospital Medical Center in Boston.
573

David M. Walker (Co-Chair) founded and served as CEO of the Comeback

America Initiative (CAI). In this capacity, he led CAI’s efforts to promote
fiscal responsibility and sustainability by engaging the public and assist-
ing key policy makers on a nonpartisan basis to help achieve solutions to
America’s federal, state, and local fiscal imbalances. Previously, Mr. Walker
served as the seventh comptroller general of the United States and was
head of the U.S. Government Accountability Office (GAO) for almost 10
years (1998-2008). His previous government positions included serving as
a public trustee for Social Security and Medicare and as assistant secretary
of labor for pension and welfare benefit programs. He also has more than
20 years of private-sector experience, including approximately 10 years as a
partner and global managing director of Human Capital Services for Arthur
Andersen, LLP. He holds a B.S. in accounting from Jacksonville University
and a senior management in government certificate in public policy from
Harvard University’s John F. Kennedy School of Government and is a certi-
fied public accountant.
Patricia A. Bomba, M.D., FACP, is vice president and medical director of

geriatrics for Excellus BlueCross BlueShield. In this role, she serves as a geri-
atric consultant on projects and program development affecting seniors. She
is a nationally recognized palliative care and end-of-life expert who designs
and oversees the implementation of community projects. Prior to her work
at Excellus BlueCross BlueShield, she was in private practice in internal
medicine and geriatrics in Rochester, New York. Dr. Bomba is New York
State’s representative on the National POLST Paradigm Task Force, a mul-
tistate collaborative. In addition to serving as a New York State Delegate
to the White House Conference on Aging, she served as a member of the
Review Committee of the National Quality Forum’s “Framework and Pre-
ferred Practices for a Palliative and Hospice Care Quality” project and the
American Board of Internal Medicine’s Primary Palliative Care Committee,
and chaired the BlueCross and BlueShield Association’s National Medical
Management Forum. She chairs New York’s MOLST Statewide Implemen-
tation Team, serves as eMOLST program director, and is a member of the
Medical Society of the State of New York’s Ethics Committee. Dr. Bomba
earned a bachelor’s degree from Immaculata College and graduated from
the University of Virginia School of Medicine. She completed her residency
in internal medicine at the University of Rochester and is board certified in
internal medicine, with added qualifications in geriatric medicine.
Eduardo Bruera, M.D., is clinical medical director and department chair

of palliative care and rehabilitation medicine at The University of Texas
MD Anderson Cancer Center. He also holds the F.T. McGraw Chair in
the Treatment of Cancer at The University of Texas. Dr. Bruera has been

APPENDIX G 575
interested in the development of palliative care programs internationally,

particularly in the developing world, where he helped in the establishment
of numerous palliative care programs in the Latin American region, India,
and throughout Europe. He served as president of the International As-
sociation of Hospice and Palliative Care for a period of 4 years ending in
January 2006. He established the first academic fellowship in palliative
care at the University of Alberta in Canada and one of the first academic
palliative care fellowships in the United States at The University of Texas
MD Anderson Cancer Center. He obtained his M.D. from the University of
Rosario in Argentina. He trained in medical oncology and relocated to the
University of Alberta in Edmonton, Canada, where he directed the clinical
and academic palliative care programs until 1999.
Charles J. Fahey, M.S.W., M.Div., is a program officer with the Milbank

Memorial Fund and a priest of the Diocese of Syracuse, New York. He
previously served as an aging studies professor in the Fordham University
Graduate School of Social Services. He was also a member of the National
Commission on Quality in Long Term Care. He founded the Third Age
Center at Fordham University in 1979. Msgr. Fahey was a charter member
of the Federal Council on Aging, serving under Presidents Nixon, Ford,
and Carter. He was a spokesperson for the Holy See at the 1982 World
Assembly on Aging (Vienna); he served in leadership roles for the 1971,
1981, 1995 White House Conferences on Aging, and served as a delegate
in 2005. He has been a board member and president of Catholic Charities
USA, the American Association of Homes and Services for the Aging, and
the American Society on Aging. He also has been a board member of the
Catholic Health Association, the Daughters of Charity National Health Sys-
tem (Ascension), the Sisters of Mercy Health Care System, and Volunteers
of America. He is currently a board member of ArchCare, the continuing
care community of the Archdiocese of New York, and immediate past chair
and board member of the National Council on Aging. He was ordained as
a Roman Catholic priest in the Diocese of Syracuse, New York, and earned
his master of social work degree from Catholic University in Washington,
DC.
Pamela S. Hinds, Ph.D., R.N., FAAN, is director of the Department of

Nursing Research and Quality Outcomes and associate director of the
Center for Translational Science at Children’s National Health System in
Washington, DC. She has expertise in the care of children with cancer and
in the development of effective team care to meet the immediate and long-
term needs of children and their families. Her research focuses on decision
making in pediatric oncology, coping and adolescents, the good parent
concept in end-of-life care, and the experience of pediatric oncology nurses.

She was founding director of the Division of Nursing Research at St. Jude
Children’s Research Hospital, where she led the nursing research program
for more than two decades. Dr. Hinds currently serves on NCI’s Symptom
and Quality of Life Scientific Committee and is co-director of the Patient-
Reported Outcomes (PRO) Resource Center for the Children’s Oncology
Group. She is a member of the National Institute of Nursing Research’s Ad
Hoc Evaluation Advisory Committee for End-of-Life and Palliative Care
Science: A Needs Assessment of Federal and Private Research Funding
Trends, Project Grants, and National Research Priorities. She also served
on the National Quality Forum’s panel on palliative and end-of-life care in
America and on the 2003 IOM Committee on Palliative and End-of-Life
Care for Children and Their Families. Dr. Hinds received her undergraduate
degree magna cum laude from the University of Vermont, Burlington, and
her M.S.N. in psychiatric nursing (summa cum laude) and Ph.D. in clinical
nursing research from the University of Arizona, Tucson.
Karla F. C. Holloway, Ph.D., M.L.S., M.A., is James B. Duke professor of

English at Duke University. She also holds appointments in the Law School,
Women’s Studies, and African & African American Studies. She has been
an affiliated faculty member with the Duke Institute on Care at the End
of Life and the Trent Center for Bioethics and Medical Humanities. Her
research and teaching interests focus on African American cultural studies,
biocultural studies, gender, ethics, and law. Dr. Holloway serves on the
Greenwall Foundation’s Advisory Board in Bioethics and the Princeton
University Council on the Study of Women and Gender. She is the author
of more than 50 essays and eight books, including Passed On: African-
American Mourning Stories (2002) and Private Bodies, Public Texts: Race,
Gender and a Cultural Bioethics (2011). She has held fellowships from
the Rockefeller Foundation (Bellagio Residency) and the Ford Foundation
(DuBois Institute, Harvard University). Dr. Holloway was recently elected
to the Hastings Center Fellows Association, a selected group of leading
researchers who have made a distinguished contribution to the field of
bioethics. She holds an M.L.S. from Duke University School of Law and
an M.A. and a Ph.D. (English/linguistics) from Michigan State University.
Naomi Karp, J.D., is a senior policy analyst at the Consumer Financial

Protection Bureau’s (CFPB’s) Office for Financial Protection for Older
Americans, where she works on a range of issues, including elder finan-
cial exploitation, diminished capacity, financial education, retirement, and
long-term planning. From 2005 to 2011, Ms. Karp was a senior strategic
policy advisor at AARP’s Public Policy Institute. She conducted research,
developed policy positions, and supported advocacy efforts regarding elder
abuse, guardianship, advance care planning, end-of-life care, probate, vot-

APPENDIX G 577
ing rights, and other legal rights issues. Her recent studies include protect-
ing investors with diminished capacity, guardianship residential decision
making, state implementation of the Physician Orders for Life-Sustaining
Treatment (POLST) protocol for advanced illness care, power of attorney
abuse, guardianship monitoring practices, and criminal background check
screening in home care. Before joining AARP, she served as an associate
staff director for the American Bar Association’s Commission on Law and
Aging. Ms. Karp has been a member of the Elder Justice Working Group,
the Federal Partners Group of the National Council on Aging, the De-
partment of Justice’s Project Advisory Group for Elder Justice Roadmap
Project, and the Ethics Committee of Washington Home and Hospices.
She completed her undergraduate studies in English at the University of
Michigan and holds a J.D. from the Northeastern University School of Law.
Jean S. Kutner, M.D., M.S.P.H., is Gordon Meiklejohn endowed profes-

sor of medicine and associate dean for clinical affairs at the University of
Colorado School of Medicine and chief medical officer at the University
of Colorado Hospital. She was the founding director of the University of
Colorado Hospital Palliative Care Consult Service. She is board certi-
fied in internal medicine, geriatrics, and hospice and palliative medicine.
Dr. Kutner developed the Population-based Palliative Care Research Net-
work (PoPCRN) and is co-chair of the Palliative Care Research Cooperative
(PCRC), a palliative care cooperative trials group funded by the National
Institute of Nursing Research. These national networks of organizations
providing palliative care facilitate the conduct of multisite studies of hos-
pice and palliative care, addressing operational as well as clinical issues.
Dr. Kutner’s own research focuses on symptoms, care delivery, and family
caregivers in hospice and palliative care. She received the Distinguished Ser-
vice Award from the American Academy of Hospice and Palliative Medicine
in 2010. Dr. Kutner received her M.D. from the University of California,
San Francisco (UCSF), and completed residency training in internal medi-
cine at UCSF. She completed a National Research Service Award (NRSA)
primary care research fellowship, earning an M.S.P.H. degree with honors
and a fellowship in geriatric medicine at the University of Colorado Denver.
Bernard Lo, M.D., is president of The Greenwall Foundation, whose mis-

sion is supporting bioethics research and young researchers in bioethics. He
had been director of the Greenwall Faculty Scholars Program since 2001.
He is professor emeritus of medicine and director emeritus of the Program
in Medical Ethics at UCSF. Dr. Lo serves on the Board of Directors of the
Association for the Accreditation of Human Research Protection Programs
and on the Medical Advisory Panel of Blue Cross/Blue Shield. From 1996
to 2001, he served as a member of the National Bioethics Advisory Com-

mittee. From 1997 to 2001, he chaired the expert panel convened by the
American College of Physicians to develop clinical, ethical, and policy rec-
ommendations regarding care near the end of life. He is a member of the
IOM and previously served as chair of the Health Policy Board and as a
member of the IOM Council. He chaired an IOM committee on Conflicts of
Interest in Medical Research, Education, and Practice. Dr. Lo developed a
course on responsible conduct of research taken by 120 UCSF postdoctoral
fellows and junior faculty each year, and he is author of Resolving Ethical
Dilemmas: A Guide for Clinicians (4th ed., 2010) and of Ethical Issues in
Clinical Research (2010). He is a graduate of Stanford University Medical
School, did his residency at both the University of California, Los Angeles,
and Stanford, and completed a fellowship at Stanford as a Robert Wood
Johnson Foundation clinical scholar.
Salimah H. Meghani, Ph.D., M.B.E., R.N., FAAN, is an associate professor

in the Department of Biobehavioral Health Sciences and a member of the
NewCourtland Center for Transitions and Health at University of Pennsyl-
vania School of Nursing. Her research focuses on understanding sources
of disparities in cancer pain and symptom outcomes among underserved
and vulnerable populations. Dr. Meghani is chair of the American Pain
Society’s Pain Disparities Special Interest Group. She serves on the Editorial
Board of Pain Medicine, the official journal of the American Academy of
Pain Medicine, and on the Board of Directors of the Foundation for Ethics
in Pain Care. Dr. Meghani has served on the Pennsylvania Department of
Aging’s statewide Task Force for Improving Quality at the End of Life for
Pennsylvanians. She is a fellow of the American Academy of Nursing. She
received her undergraduate degree in nursing summa cum laude from the
Aga Khan University, Karachi. She holds an M.S.N. from the University of
Pennsylvania School of Nursing and a Ph.D./M.B.E. (nursing/bioethics),
both summa cum laude, from the University of Pennsylvania, Philadelphia.
Her postdoctoral training is in health disparities research.
Diane E. Meier, M.D., is Director of the Center to Advance Palliative Care

(CAPC), a national organization devoted to increasing access to quality
palliative care in the United States. Under her leadership the number of
palliative care programs in U.S. hospitals has more than tripled in the
past 10 years. She is also co-director of the Patty and Jay Baker National
Palliative Care Center; Vice-Chair for Public Policy and Professor of Ge-
riatrics and Palliative Medicine; Catherine Gaisman Professor of Medical
Ethics; and was the founder and Director of the Hertzberg Palliative Care
Institute from 1997-2011, all at the Icahn School of Medicine at Mount
Sinai in New York City. Dr. Meier is the recipient of the 2008 MacArthur
Fellowship and the American Cancer Society’s Medal of Honor for Cancer

APPENDIX G 579
Control in recognition of her leadership of the effort to bring nonhospice

palliative care into mainstream medicine. She is a member of the IOM of
the National Academy of Sciences. Dr. Meier has published more than
200 original peer review papers and several books. Her most recent book,
Meeting the Needs of Older Adults with Serious Illness: Challenges and
Opportunities in the Age of Health Reform was published by Springer
in 2014. Dr. Meier received her B.A. from Oberlin College and her M.D.
from Northwestern University Medical School. She completed her residency
and fellowship training at Oregon Health Sciences University in Portland.
She has been on the faculty of the Department of Geriatrics and Palliative
Medicine and Department of Medicine at Mount Sinai since 1983.
William D. Novelli, M.A., is a professor in the McDonough School of

Business at Georgetown University. He teaches in the M.B.A. program
and has created and leads the Global Social Enterprise Initiative at the
school. He is also co-chair of the Coalition to Transform Advanced Care
(C-TAC), a national organization dedicated to reforming advanced illness
care by empowering consumers, changing the health care delivery system,
improving public policies, and enhancing provider capacity. Earlier, he was
CEO of AARP, a membership organization of more than 40 million people
aged 50 and older. Prior to that, he was president of the Campaign for
Tobacco-Free Kids, whose mandate is to change public policies and the so-
cial environment, limit tobacco companies’ marketing and sales practices to
children, and serve as a counterforce to the tobacco industry and its special
interests. He now serves as chairman of the board. Previously, Mr. Novelli
was executive vice president of CARE, the world’s largest private relief
and development organization. Earlier, he co-founded and was president
of Porter Novelli, now one of the world’s largest public relations agencies.
Porter Novelli was founded to apply marketing to social and health issues,
and grew into an international marketing/public relations agency with
corporate, not-for-profit, and government clients. Mr. Novelli received his
B.A. from the University of Pennsylvania and his M.A. from the University
of Pennsylvania Annenberg School for Communication.
Stephen G. Pauker, M.D., is professor of medicine and psychiatry at Tufts

Medical Center and a faculty member of the Department of Medicine’s Di-
vision of Clinical Decision Making, Informatics and Telemedicine at Tufts
Medical Center. His research has focused on the application of decision
analysis to clinical problems, cost-effectiveness and cost-benefit analyses,
and medical informatics. His current interests include health policy and
guidelines for cardiac disease, utility acquisition and comparison of health
status measurement, expert systems for decision support in cardiovascular
disease, inference and support of individual patients’ decisions in genet-

ics, neonatal screening programs, and decision analysis software. He is a

long-standing member of the medical center’s ethics committee. Dr. Pauker
is a member of the IOM, the Association of American Physicians, and the
American Society for Clinical Investigation. He is a past president of the
Society for Medical Decision Making, now serving as its historian. He is a
master of the American College of Physicians and a fellow of the American
College of Medical Informatics, the American College of Cardiology, the
American Society for Clinical Hypnosis, and the Society for Clinical and
Experimental Hypnosis, of which he is immediate past president. He is
also president of the American Board of Medical Hypnosis. He received
his M.D. from Harvard Medical School and completed his postgraduate
training at Boston City Hospital, Massachusetts General Hospital, and
Tufts Medical Center. He is board certified in internal medicine, cardiology,
and medical hypnosis.
Judith R. Peres, M.S.W., is currently an expert consultant in the areas of

long-term care and palliative end-of-life care at Altarum Institute’s Center
for Elder Care and Advanced Illness. Her career spans more than four
decades in both Medicare and Medicaid health policy, as well as direct
clinical work. She maintains a private practice as a clinical social worker
serving Medicare beneficiaries. Ms. Peres recently worked for 5 years with
the U.S. Department of Health and Human Services (HHS) in the Office
of the Assistant Secretary for Planning and Evaluation (ASPE) to develop
the Report to Congress on Advance Care Planning. Previously, she was
vice president for policy and advocacy of the former Last Acts Partnership
and deputy director of the Last Acts National Program Office, funded by
the Robert Wood Johnson Foundation to improve care and caring near the
end of life. In those roles, she developed major policy pieces speaking to
the need to improve end-of-life care in this country. Prior to her appoint-
ment at Last Acts, she served as director of health policy for the American
Association of Homes and Services for the Aging, specializing in quality,
reimbursement, and workforce issues. In addition, she had a distinguished
career in Medicare and Medicaid reimbursement and financing policy for
HHS. Her clinical practice also included employee assistance program
work for the Sheppard Pratt Institute in Baltimore, Maryland, and work
as a practicing psychotherapist for Kaiser Permanent, with a specialty in
cognitive-behavioral therapy and mind/body health. Ms. Peres is a founding
board member of the Social Work Hospice and Palliative Care Network.
She holds a master’s degree in social work from the University of Maryland,
and received additional training at the Mind/Body Institute in Washington,
DC, and in rational emotive behavioral therapy at the Albert Ellis Institute
in New York.

APPENDIX G 581
Leonard D. Schaeffer is currently Judge Robert Maclay Widney chair and

professor at the University of Southern California (USC) and a senior advi-
sor to TPG Capital, a private equity firm. Mr. Schaeffer was chairman and
CEO of WellPoint from 1992 to 2004 and continued as chairman through
2005. He was CEO of WellPoint’s predecessor company, Blue Cross of
California. Previously, he served as president and CEO of Group Health,
Inc., executive vice president and chief operating officer of the Student
Loan Marketing Association (Sallie Mae), and vice president of Citibank.
Mr. Schaeffer has held appointments as administrator of the federal Health
Care Financing Administration (now the Centers for Medicare & Medic-
aid Services); assistant secretary for management and budget of the federal
Department of Health, Education, and Welfare; director of the Bureau of
the Budget for the State of Illinois; chairman of the Illinois Capital Devel-
opment Board; and deputy director of the Illinois Department of Mental
Health. He was elected to the IOM in 1997 and as a member of the Health
Affairs editorial board. He serves on the boards of various companies and
organizations, including Amgen Inc.; the Brookings Institution; Harvard
Medical School; RAND Corporation; Quintiles Transnational Corporation;
USC; the Coalition to Transform Advanced Care; and the USC Schaeffer
Center for Health Policy and Economics, which he established in 2009.
Mr. Schaeffer is a graduate of Princeton University and was the Regent’s
lecturer at the University of California, Berkeley, and a Gilbert fellow at
Princeton University.
W. June Simmons, M.S.W., is founding president and CEO of Partners

in Care Foundation, formerly the Visiting Nurse Association (VNA) of
Los Angeles, a nonprofit foundation that develops and tests health services
innovations and works to ensure access to home and community care. In
this role, she develops initiatives and proactive programs that meet the
mutual needs of patient populations, providers, and health care delivery
networks to encourage cost-effective, patient-friendly integration of care
from hospital to home and community. Previously, she worked as an asso-
ciate hospital administrator at Huntington Memorial Hospital, and before
that she was founding director of Senior Care Network. Ms. Simmons is
just completing a term as a member of the National Advisory Council to
the National Institute on Aging. Among other professional memberships
and experiences, she has contributed her expertise by serving on the Leader-
ship Council of the National Council on Aging, the Executive Committee
and National Board of the American Society on Aging, and the Advisory
Board and Mentor Panel of the Practice Change Fellows. She is a found-
ing member of the national Evidence Based Leadership Council and was
founding chair of the National Chronic Care Consortium. In addition,
Ms. Simmons has served on several local technical committees, panels,

and advisory boards, including the L.A. County Long Term Care Strategic
Planning Team, the Board of Councilors of the USC School of Social Work
(chair), the Federal Hispanic Elders Project, and the USC Roybal Institute.
She holds an M.S.W. from USC.
Christian T. Sinclair, M.D., FAAHPM, is assistant professor in the Divi-

sion of Palliative Medicine at the University of Kansas Medical Center.
Previously, he was a national hospice medical director at Gentiva Health
Services, where he led physician support, education, and compliance for
the North Central region of Gentiva Hospice. He has provided hospice
and palliative care in nursing facilities, homes, hospitals, clinics, and stand-
alone hospice units. Dr. Sinclair is serving his second term on the American
Academy of Hospice and Palliative Medicine’s Board of Directors and has
experience as a palliative medicine fellowship director. He is the editor of
the website Pallimed (www.pallimed.org), which discusses important re-
search and media articles related to hospice and palliative care. He is highly
active in social media for health care professionals, utilizing Facebook,
Twitter, and other platforms to increase awareness of hospice and pallia-
tive care. Dr. Sinclair received his M.D. from the University of California,
San Diego, and completed internal medicine residency training at Wake
Forest University Baptist Medical Center. He completed his fellowship in
hospice and palliative medicine at the Hospice and Palliative Care Center
in Winston-Salem, North Carolina.
Joan M. Teno, M.D., M.S., is professor of health services, policy, and prac-
tice and associate director of the Center for Gerontology and Health Care
Research at the Brown Medical School; she is also associate medical direc-
tor at Home and Hospice Care of Rhode Island. She is a board-certified
internist with added qualification in geriatrics and palliative medicine. Dr.
Teno’s research has focused on measuring and evaluating interventions
designed to improve the quality of medical care for seriously ill and dying
patients. She led the effort in the design of the Study to Understand Prog-
noses and Preferences for Outcomes and Risks of Treatments (SUPPORT)
intervention analysis and was lead author of 12 publications resulting from
that research effort, which ranged from addressing the role of advance di-
rectives to describing the dying experience of seriously ill and older adults.
She was also lead investigator for a research effort to create a Toolkit of
Instruments to Measure End-of-Life Care (TIME). She is a lead investigator
for research examining health care transitions and the use of feeding tubes
in persons with advanced cognitive impairment. Dr. Teno is a graduate of
Hahnemann Medical University. She completed her internal medicine resi-
dency at Rhode Island Hospital in Providence and fellowships in geriatric
medicine and health services research in gerontology at Brown University.

APPENDIX G 583
Also from Brown, she received her M.S. in community health, with a spe-
cialty in gerontology and chronic disease epidemiology.
Fernando Torres-Gil, Ph.D., is professor of social welfare and public policy

at the University of California, Los Angeles (UCLA), adjunct professor of
gerontology at USC, and director of the UCLA Center for Policy Research
on Aging. He has served as associate dean and acting dean at the UCLA
School of Public Affairs, and most recently as chair of the Social Welfare
Department. His research focuses on such topics as health and long-term
care, disability, entitlement reform, and the politics of aging. Dr. Torres-
Gil was appointed to the Federal Council on Aging by President Jimmy
Carter in 1978; he later was selected as a White House fellow and served
under Joseph Califano, then secretary of the U.S. Department of Health,
Education, and Welfare (HEW). He continued as a special assistant to the
subsequent secretary of HEW, Patricia Harris. He was appointed (with
Senate confirmation) by President Bill Clinton as the first-ever U.S. assis-
tant secretary on aging in HHS. In 2010, he was appointed (with Senate
confirmation) by President Barack Obama as vice chair of the National
Council on Disability. He has written 6 books and more than 100 publica-
tions, including The New Aging: Politics and Change in America (1992).
Dr. Torres-Gil earned his A.A. in political science at Hartnell Community
College (1968), a B.A. with honors in political science from San Jose State
University (1970), and an M.S.W. (1972) and a Ph.D. (1976) in social
policy, planning, and research from the Heller Graduate School in Social
Policy and Management at Brandeis University.
James A. Tulsky, M.D., is professor of medicine and nursing and chief,

Duke Palliative Care at Duke University. His research focuses on clinician-
patient communication, quality of life at the end of life, trajectories of pa-
tient experience, and the evaluation of interventions to improve the care of
patients with serious illness. He has authored more than 150 publications
on these topics, including a book titled Mastering Communication with
Seriously Ill Patients: Balancing Honesty with Empathy and Hope (2009).
He was a Project on Death in America faculty scholar; serves on the Ad-
visory Council for the National Institute of Nursing Research; chairs the
Greenwall Foundation Faculty Scholars Program Advisory Committee; and
is a founding director of VitalTalk, a nonprofit dedicated to transforming
the culture of communication throughout the medical community. He has
received multiple awards for his work, including the 2002 Presidential Early
Career Award for Scientists and Engineers; the 2006 American Academy on
Hospice and Palliative Medicine Award for Research Excellence; and the
2013 George L. Engel Award from the American Academy on Communi-
cation in Healthcare for “outstanding research contributing to the theory,

practice and teaching of effective healthcare communication and related

skills.” He is a graduate of the University of Illinois at Chicago School of
Medicine, and he completed both his residency in internal medicine and
a Robert Wood Johnson Foundation clinical scholar fellowship at UCSF.

Index
A Accreditation Council for Graduate Medical

Education (ACGME), 14, 252, 417,
AARP, 96, 175, 299, 312 429
ACA (see Patient Protection and Affordable Activities of daily living (ADLs), assistance
Care Act) with, 9, 86, 144 n.20, 241, 248,
Accountable care organizations (ACOs) 297, 302, 491-492, 501, 508, 509,
ACA and, 279-280, 310, 317-319 513
Advance Payment Model, 317 Acute Physiology and Chronic Health
alternatives to, 320 Evaluation (APACHE), 92
care management practices, 473 Adams, Lisa Bonchek, 365
defined, 317 Administration for Community Living, 279,
Medicare policies, 317, 318-319, 472 301
outpatient care, 292 Administration on Aging, 299, 301, 311
palliative and hospice care, 292, 472- Advance care planning
473, 479 ACA and, 12, 120, 132, 366-370
patient characteristics, 318 age and, 126, 136
performance measurement benchmark, autonomy principle and, 124-125, 152,
317, 472 166, 181
Pioneer program, 317, 318, 468, 471, barriers and disincentives, 11, 12,
472, 473 117, 125, 126-129, 141, 154-155,
population-based payment model, 318 213
proposed improvements, 318-319 cancer context, 137, 140-141, 169, 170,
and quality of care, 84, 317, 318, 468, 172, 214-215
469, 473 for children and youth, 68, 134, 136,
reimbursement and payment approaches, 141-144, 146, 173, 184, 187, 188,
279-280, 317-318, 468, 471, 472, 356, 425-426, 429, 432
479 choice of health care agent, 129-132,
Shared Savings Program, 315, 317, 318, 172
468, 472, 473 chronic obstructive pulmonary disease
and social services, 310 context, 137, 212-213
585

586 INDEX
clinician-patient communication, 2, 3, long-term care, 164, 172, 174, 179, 218

6, 11-13, 18, 50, 117, 118, 128-129, managed care and, 298 n.18
142, 146, 149-150, 152, 154, 155, Medicare and, 121, 124, 139, 464, 510
157-172, 190-191, 212, 213, 237, model initiatives, 172-185
345, 448 National Framework and Preferred
cognitive impairment/dementia context, Practices for Palliative and Hospice
119, 137, 145-146, 215-216 Care Quality, 172-173, 185, 425-426
consultations and discussions, 118, nurses, 185, 186, 389, 448
128-129, 143, 155, 185-186, 190, nursing home residents, 126, 129, 132,
211-212, 367, 510 151, 152, 171, 176, 177, 181, 182,
Consumer’s Toolkit for Health Care 188, 216, 286, 448, 468
Advance Planning, 123-124 palliative care consultation, 60, 66, 137,
Conversation Project, 124, 125, 352- 143, 155, 160-161, 169, 172-173,
353, 354, 356-357, 360, 420 175, 215 n.13
and costs of health care, 12, 18, 139- and patient/caregiver satisfaction with
141, 369, 510 care, 135-137
current state of, 118, 124-141 POLST paradigm, 17, 121, 123, 172,
“death panels” controversy, 12, 120, 173-179, 180, 182, 183, 184, 187,
132, 366-370 188, 189-190, 217-219, 323, 331,
decision aids, 170-172 358, 389, 448
decision-making capacity, and methods preferences for care, 11, 12, 13, 18, 125-
of patients, 146, 167-172, 189 127, 141-157, 189, 369, 510
definitions, 120, 122, 385 primary care and, 186
demographic characteristics and, professional education and training, 181,
125-127 225, 227, 237
disability context, 145-147, 178 public education and engagement, 18,
effects on health care agents and 19, 20, 32, 121-124, 125, 172-173,
families, 2, 11, 136, 137-139, 367 345, 346-347, 352-353, 354, 355,
elderly people, 136, 144-145 356-357, 358, 359, 360, 370, 371,
electronic health records and, 17, 181- 420, 421
185, 188, 331 public support for, 368, 370
family involvement in, 18, 128, 143, and quality of care, 78 n.13, 80, 135-
150, 152, 154, 164-166 137, 176-178
financial planning considerations, 145, quality-of-life considerations, 147, 148
212 racial, ethnic, and cultural differences,
health care agents, 11, 18, 118, 122, 11, 49, 125, 148-155, 188
124, 126, 129-132, 134, 135, 136, recommendations, 12-13, 17, 19, 20,
137-139, 142, 145, 147, 150, 157, 190-191, 330-331, 370, 371
158, 160, 164-166, 167, 173, 174, reimbursement policies and financial
175, 176, 179, 183, 184, 185, 186, incentives, 17, 117, 121, 188-189,
187, 189, 211, 212, 215, 216, 349, 320, 323, 331, 368, 369-370, 464,
385, 386, 387, 389 468
health literacy and, 156-157 religion and, 147-149, 178-179, 212
heart failure context, 137, 211-212 research needs, 187-189, 432
historical review, 120-124 Respecting Choices initiative, 179-181
homeless or “unbefriended” people, and satisfaction with care, 135-137
146-147 shared decision making, 1, 4, 17, 136,
and hospice enrollment, 212 138, 157, 166-172, 173, 174, 182,
life cycle model (proposed), 185-187, 188, 326, 331
189-190 social workers and, 185, 186, 243
literacy level and, 155-157 state policies and, 323

INDEX 587
and longevity/survival, 136 Respecting Choices, 141, 143 n.19, 172-

system factors in, 11, 154-155 173, 179-181, 212
and utilization rates, 140 shortcomings in, 11, 119-120
VA model, 146 use outside the United States, 124
Advance directives Advance Payment Model, 317
adherence to, 11, 55, 56, 88, 132-135, Advancing Palliative Care Research for
175, 180, 189-190, 323, 326, 369, Children Facing Life-Limiting
448 Conditions, 431
barriers to having, 126-127, 147, 155, Aetna, 53, 322, 408, 412, 476, 477
157 African Americans/Blacks
Caring Conversations® initiative, 123 advance care planning, 129, 149, 151,
for children, 134, 141-142, 143, 356, 152-154
426 costs of care, 350, 495, 496, 497, 506,
clinician knowledge and training, 237 507, 569
correlates of having, 126, 144, 148, 149, direct care workers, 249
151, 154 hospice use, 152, 153, 154, 322, 569
and costs of care, 139, 140, 510 insurance payor, 495
default treatments, 169-170 life expectancy, 34
definition of terms, 120, 122-123, 385, literacy levels, 156
387 mortality data, 153
do-not-hospitalize orders, 123, 152, 286 physicians, 240
do not resuscitate (DNR), 60, 121, 123, preferences for end-of-life care, 60, 149,
136, 146, 149, 152, 154-155, 174, 153-154, 155, 322, 348, 364
176, 184, 448 site of death, 61-62, 152, 153, 553-554
durable power of attorney for health treatment differences, 49, 153-154
care, 118 n.1, 122, 124, 130, 145, trust issues, 153-154
366 n.14, 386 utilization of services, 49, 506, 513
effects on family and health care agent, Age/aging (see also Children; Life
138 expectancy)
electronic storage of, 11, 17, 172, 180, and advance care planning, 126, 136
181-185, 331, 448 and cause of death, 31, 34
Five Wishes, 142, 356, 426 and costs of end-of-life care, 494, 495,
flexibility in interpreting, 134-135 499
homeless people, 146 demographic trends, 35-38
Honoring Choices, 354, 356, 357, 421 Agency for Healthcare Research and
incorporation into medical record, 121, Quality (AHRQ), 33, 79, 99, 211
180, 181 n.36, 299 n.20, 537, 538
and intensive care, 126, 151, 214, 216 Aging with Dignity and Five Wishes, 352,
legislation and legal implications, 354, 356-357, 420
88, 121, 124, 126, 134-135, 366, Aid to Capacity Evaluation, 145 n.22
369-370 Albom, Mitch, 352
living wills, 117, 120, 122, 124, 132, Alliance for Excellence in Hospice and
133, 136 n.13, 147, 175, 181, 184, Palliative Nursing, 243
366 n.14, 369, 385, 387 Alternative Quality Contract (AQC), 468,
logistical/system challenges, 134, 212, 473-474
303, 426 Alzheimer’s disease, 36, 37, 38, 61, 165,
physician concerns with, 133 215, 295, 311, 444, 456, 509
POLST compared to, 175-176, 178 Alzheimer’s Disease Supportive Services
promotion of, 172-173, 179-181 Program, 279
racial and ethnic differences, 11, 49, American Academy of Family Physicians, 51
150, 151, 154, 155

588 INDEX
American Academy of Hospice and Autonomy principle, 59, 78 n.13, 83, 124-
Palliative Medicine (AAHPM), 78, 125, 146, 150, 152, 166, 181, 316,
84, 223, 410, 415, 417 362, 364-365
American Academy of Pediatrics, 51, 52
American Association of Colleges of
Nursing, 231, 232, 415 B
American Bar Association Commission on
Bereavement services/support, 28, 58, 68,
Law and Aging, 123, 124
69, 72, 78-79, 96, 98, 165, 187, 233,
American Board of Family Medicine, 239
241, 242, 244, 321, 411, 422, 423,
American Board of Hospice and Palliative
424, 426, 428, 430, 431, 432, 453,
Medicine, 238, 417
535, 552, 564, 571
American Board of Internal Medicine, 239
Biopsychosocial model of care, 62-63, 235
American Board of Medical Specialties
Bipartisan Policy Center, 269
(ABMS), 238-239, 240, 417, 429
Blacks (see African American/Blacks)
American Cancer Society, 414
Board of Chaplaincy Certification Inc., 247,
American College of Physicians, 51
418
American Geriatrics Society (AGS), 78 n.13,
Board of Oncology Social Work
362-363
Certification, 244
American Hospital Association, 173
Board of Pharmacy Specialties (BPS), 246,
American Indians, 152
418
American Medical Association, 33, 229
Budget Neutrality Adjustment Factor, 319
Physician Consortium for Performance
n.30, 413
Improvement, 85
Bundled Payments for Care Improvement
American Osteopathic Association, 51
Initiative, 316, 413, 471
American Public Health Association
(APHA), 32-33
American Recovery and Reinvestment Act
of 2009, 387 C
American Society of Clinical Oncology, 73, California
81 n.14 Advanced Illness Management program,
American Society of Health-System 322
Pharmacists, 245-246 cessation-of-treatment conflict, 364
Anderson, Gloria, 152 Health-Care Partners Comprehensive
Anxiety, 45, 48, 56, 96, 136, 145 n.21, Care Program, 313 n.28
157-158, 167, 213, 266, 284, 311, HealthCare Foundation, 127, 368
323 home- and community-based care costs,
Approaching Death report 300, 569
progress since and remaining gaps, Natural Death Act of 1976, 121
407-422 palliative care education requirements,
Asians/Pacific Islanders, 60, 152, 156 230, 232
Assessing Care of Vulnerable Elders pediatric palliative care program, 68,
(ACOVE) initiative, 79, 84-85, 410 427, 569
Associated Press-National Opinion Research POLST program, 123, 177
Center, 127 Campaigns, public education and
Association of American Medical Colleges, engagement
222-223, 227 audiences, 358-360
Association of Pediatric Hematology and channels, 360-361
Oncology Nurses, 67, 423 evaluation, 361-362
Association of Professional Chaplains, 247, examples on health-related topics,
418 378-383

INDEX 589
Last Acts campaign, 33, 353, 361 complicated grief, 138

messages, 360 and costs of care, 301
sponsorship, 355, 358 delivery of care, 92-97, 102
Cancer care demand and supply, 8, 95, 102
ACA and, 314 n.29 depression and anxiety, 213
advance care planning, 137, 140-141, education and training, 2, 15, 53, 76,
169, 170, 172, 214-215 97, 138, 245, 311, 330
advocacy groups, 64 financial toll, 94, 95
clinician-patient communication, 152, hospice eligibility requirements, 294
158, 159, 161, 165, 171-172, 214, legislation protecting, 97
237 meals and nutrition services, 287, 309,
coordination of care, 51, 65, 67, 68 310, 312-313, 330
costs of care, 37, 140-141, 275, 290, Medicare benefit structure and, 296-297
508, 510, 520 and palliative care, 58, 64, 67, 86, 95,
and depression, 65, 67, 290 245, 249
eligibility for therapies, 65 n.8 prognosis and, 87
hospice care, 30, 61, 62, 65, 295, 393, research needs, 96, 98
465, 476, 520 respite care, 97, 98, 243, 274, 292, 302,
incidence, 37 309, 310, 312-313, 330, 424, 427,
information preferences, 159 450, 452, 464, 476, 539, 569
longevity/survival, 62, 69, 215 responsibilities, 8, 14, 19, 53, 93
mortality data, 31, 34, 35, 36, 214, 456, suggestions for improving care, 450-451
546 support needed for, 4, 9, 10, 15, 73
palliative care, 7, 62, 65, 67, 68, 69, 70, n.12, 86, 97, 98, 233, 279, 304, 309,
72, 73, 77, 171, 215, 228, 290, 294, 310-311
414, 423, 519, 546, 560 and utilization of health services, 267,
pediatric, 35, 38, 48, 67, 275, 423, 309
545 CARING (Cancer, Admissions ≥2,
preferences for care, 55, 132, 133, 140, Residence in a nursing home,
165, 171, 214, 215, 510 Intensive care unit admit with
prognostication, 30, 88, 89-90, 91, 294, multiorgan failure, ≥2 Noncancer
466 hospice Guidelines), 89-90, 91
providers of care, 48, 51, 230, 232 Caring Conversations®, 123
public engagement, 365 Cash & Counseling program, 97, 313
quality of care, 77, 81, 82, 411 Catholic Health Association, 178-179
quality of life, 72, 73, 290 Catholic Medical Association, 178
research on treatments, 99 C-Change, 64
spiritual care, 140 Center for Medicare & Medicaid
trajectories and symptoms, 46, 48, 515, Innovation, 81-82, 314
534, 560 Center to Advance Palliative Care (CAPC),
and utilization of services, 519 66, 78, 100, 223, 224 n.2, 234, 352,
Cardiopulmonary resuscitation (CPR), 24, 408, 419, 425
78 n.13, 171, 173, 176, 216, 218, Centers for Disease Control and Prevention
387, 558-559 (CDC), 34, 383, 490-491, 499, 536,
Care Choices Model, 412, 476 537, 540, 541, 542, 543, 544, 547,
Caregiver Action Network, 354 n.4 549, 551, 552, 553, 554, 555
Caregivers, family Centers for Medicare & Medicaid Services
bereavement services for, 96, 233, 424 (CMS) (see also Medicaid; Medicare)
burdens on, 14, 96, 138, 266, 276, 297, accountable care organization policies,
452-453 317, 318-319, 472
characteristics, 8, 46, 92-93, 94-95 advance care planning policy, 369-370

590 INDEX
Budget Neutrality Adjustment Factor, pediatric age range defined, 535-536

319 n.30, 413 site of death, 34, 61-62, 68, 547-548,
Bundled Payments for Care 549, 551, 552-554, 555
Improvement Initiative, 316, 413, Children’s Health Insurance Program, 412,
471 424, 427, 477-478
Community-based Care Transitions Children’s Hospital Boston, 68, 230, 423,
Program, 53 428
data collection suggestions for, 525 Children’s International Project on
electronic health records promotion, 184 Palliative/Hospice Services, 429
emergency services policy, 281 Children’s Oncology Group, 67, 423
Financial Alignment Initiative, 315-316 Children’s Program of All-Inclusive
hospice conditions of participation, 244 Coordinated Care for Children and
Hospital Readmissions Reductions Their Families, 422
Program, 53 Chronic obstructive pulmonary disease
integrating Medicare and Medicaid (COPD), 37, 70, 88, 133, 137, 170,
financing for dual-eligible individuals, 212-213, 476, 500, 508, 509
474-475 City of Hope National Medical Center, 232
National Health Expenditure estimates, Clinician-patient communication
488, 489 in advance care planning, 2, 3, 6, 11-13,
palliative medicine subspecialty 18, 50, 117, 118, 128-129, 142,
approval, 417 146, 149-150, 152, 154, 155, 157-
policy advances, 33, 53, 315-316, 319, 172, 190-191, 212, 213, 237, 345,
326 448
Quality Improvement Organization barriers to, 159-160
Program, 53, 79 cancer care, 152, 158, 159, 161, 165,
quality-of-care measures and reporting 171-172, 214, 237
requirements, 79, 83-84, 411, 469 and costs of care, 25, 290
Chaplains and chaplaincy services decision aids, 170-172
certification, 14, 247-248, 250, 418 elements of good communication,
education and training, 15, 222, 228, 351-352
230, 247-248, 252, 418 emotional encounters with patients,
and hospital mortality rates, 247 161-162
hospital staffing, 564 family and health care agent
and Medicare Hospice Benefit, 247 involvement, 164-166
palliative care specialty, 8, 10, 67, 247- goals, 158
248, 418 importance of conversations, 28,
and perceptions of quality of care, 247 446-447
scope of services, 4, 7 n.2, 8, 10, 27, 49, information preferences, 159
59, 67, 71, 101, 103, 221, 233, 237- intensive care setting, 138, 165, 230,
238, 246-248, 251, 321, 385, 389, 428
426, 428, 450 nurses, 129, 162, 226, 231, 235
Children (see also Pediatric end-of-life care) nursing home residents, 216, 224
advance directives, 134, 141-142, 143, nurturing patients’ hope, 162-163
356, 426 palliative care, 64, 288, 290, 431
age at death, 35, 540-542, 543 professional education and training, 225,
causes of death, 31, 35, 36, 542, 544, 226, 229, 230, 231, 232 n.11, 233,
546-547 234, 235-237, 241, 250, 251-252,
end-of-life trajectories and symptoms, 428, 451
47, 48 prognosis discussions, 92, 160-161, 164-
mortality rates, 34, 35, 536-537, 540- 165, 212, 213
542, 551 and quality of care, 79, 190, 283

INDEX 591
racial, ethnic, and cultural site of death, 552, 555

considerations, 149-150, 152, 154, VA Home Based Primary Care Program,
155, 522 72
recommendations, 12-13, 190-191 Concurrent care
reimbursement issues, 452 ACA and, 319, 320, 412, 427, 475-476,
and satisfaction with care, 158, 164, 477
167, 290 costs implications, 412, 477, 567-570
shared decision making and patient- demonstration projects, 319, 412, 427,
centered care, 166-172 475-476, 477
spirituality and religion, 163 financing, 278, 297, 319, 427, 475-478
understanding patient decision-making institutional long-term care and, 297
methods, 167-170 and longevity, 72
Coalition to Transform Advanced Care, 227 Medicare coverage, 154, 319, 412, 427,
Cognitive impairment (see also Dementias) 475-476, 477
and advance care planning, 119, 137, nursing home residents, 278
145-146, 215-216 palliative care and, 7, 58, 73, 277, 287,
probability, 38 293, 295, 297-298, 321, 322
Coleman, Diane, 147 pediatric, 319, 427, 477-478, 533-534,
Colorado 567, 569-570
Evercare managed care model, 286 private-sector initiatives, 321-322, 476
pediatric palliative care program, 68, and quality of life, 72, 412
427 recommendations of professional
POLST program, 123 societies, 73
transitional care model, 53 satisfaction with, 322
Communication (see Clinician-patient Congestive heart failure, 46, 63, 70, 133,
communication) 170, 476, 491, 493, 508, 509, 526
Community-based Care Transitions Congressional Budget Office, 284 n.10, 323,
Program, 53 503
Community-based services (see Home- and Consumer Assessments and Reports of End
community-based services) of Life (CARE) survey, 78, 80
Community Conversations on Consumer’s Toolkit for Health Care
Compassionate Care, 122, 172-173, Advance Planning, 123-124
354, 356, 358, 421 Continuity of care
Community Living Assistance Services and coordination of care and, 50-51
Supports Act (CLASS), 315, 475 hospitals, 68
Community-State Partnerships to Improve pediatric care, 68
End-of-Life Care, 33, 323 primary care and, 49-50, 68
Community-Wide End-of-Life/Palliative public testimony on, 448-451
Care Initiative, 358 racial and ethnic differences, 155-156
Compassionate Friends, 354 n.4 transitions between care settings and, 52
CompassionNet, 68 Conversation Project, 124, 125, 352-353,
Complex chronic conditions 354, 356-357, 360, 420
age and, 36 Coordinated-Transitional Care (C-TraC),
children, 34, 546-547, 551-552, 554- 53-54
559, 571 Coordination of care (see also Delivery of
contributing factors, 34-35 end-of-life care)
coordination of care, 50-51 across programs, 4, 25
and costs of care, 36, 266 advance directive and, 134, 212, 303,
and delivery of care, 50 426
hospitalizations, 266, 554, 556 cancer care, 51, 65, 67, 68
self-management, 156 communication and, 50, 55

592 INDEX
continuity of care and, 50-51 dementias and, 37, 270, 303, 328, 509-
and costs of care, 4, 25 510, 517
disease management programs, 54, 186, demographic characteristics, 506-507
212, 304, 305, 306 delivery of care and, 16, 25
by family, 14 distribution and trends, 488-489
importance of, 46, 50, 86 emergency services and, 281-282, 569
incentive policies and, 17, 275-302, epidemiology of chronic conditions and,
329-330 499-501
interdisciplinary team approach, 7, 10, family caregivers and, 301
13, 58, 68, 71-72, 79, 101, 102, 103, fiscal challenges, 267-271
226, 244, 424, 429, 563-564, 571 fragmentation of care and, 4, 25
long-term care, 304-305, 308, 470 geographic variations, 22, 305-307, 458-
measurement of, 51 n.2, 81 459, 510-512
medical homes, 51-52, 82, 302, 303, goals of care discussions and, 510
314, 469 health characteristics and, 508-510
Medicare and, 304, 305, 308, 315-316, hospice care, 292-295, 519-522
330 hospitalization, 22, 266, 280-281, 512-
multiple chronic conditions and, 50-51 513, 564, 565-567, 568, 569
palliative care and, 63, 68, 71, 84, identifying high-cost patients, 525
322 identifying target population for
primary care and, 49-51, 68 cost-saving
public testimony on, 448-451 informal care, 37, 38
and quality of care, 31, 76, 81, 82, 265, interventions, 523-525
303-306 life expectancy and, 35-36
and satisfaction with care, 76 long-term care, 273, 274, 296, 300-301,
scenario of lack of, 55, 56-57 458, 502
transfer of patient information across magnitude and proportion, 502-503
settings, 10, 17, 50, 103, 181-185, Medicaid, 16, 268, 271, 273, 291, 298,
188, 331 300-301, 302, 303, 312, 459, 495,
and transitions between care settings, 497, 498, 499, 502, 522
49-52, 53, 54, 100 Medicare, 139, 268, 276, 279-280, 283-
and utilization of acute care services, 9, 284, 451, 504, 519-523
50-51, 86 nursing home population, 37, 272, 273,
Costs of end-of-life care (see also 277, 296, 310, 312, 457, 465, 489,
Financing and organization of end- 490, 492, 493, 494, 495, 496, 497,
of-life care) 498, 499, 501-502, 509, 514, 515,
advance care planning and, 12, 18, 139- 517, 522
141, 369, 510 palliative care, 74, 264, 274, 287-292,
age and, 494, 495, 499 327, 329, 519
cancer patients, 37, 140-141, 275, 290, patient characteristics associated with,
508, 510, 520 505-513
changes over time, 4, 25, 504 by payor, 498-499
chronic conditions and functional percent of gross domestic product, 15-
limitations and, 22-23, 36, 37, 266, 16, 267, 268, 283-284, 308
491-494, 516-517 populations with highest costs, 489-499,
clinician-patient communication and, 25, 513
290 preferences of patients and, 2, 15, 21,
concurrent care, 567-570 510
coordination across programs and, 4, public attitudes about, 3, 18, 451-452
16, 25 and quality of care, 15, 22, 275-302
data limitations and gaps, 517-518 race/ethnicity and, 494-497

INDEX 593
reimbursement policies and, 4, 16, 25, Delivery of end-of-life care (see also
137, 269 n.6, 276, 279-280, 318, Continuity of care; Coordination
451-452, 473, 504-505, 508 of care; Transitions between care
and survival, 22 settings; specific services)
trajectories of illness and, 22, 513-517 ambulatory care environment, 282-285
utilization of services and, 456-458, for children, 67-69
512-513, 525-526 communication and, 55-58
variation among decedents, 504-505 and costs of care, 16, 25
Critical care (see Intensive care/critical current situation, 46-55
care) family caregivers, 92-97, 102
Critical Care End-of-Life Peer Workgroup, hospice care, 46, 48-49, 50, 54, 56, 59,
77, 229, 231-232, 234, 323 60-62, 63, 65, 100, 101
Cruzan, Nancy Beth, 364 hospital environment, 280-282
interdisciplinary team approach, 7, 10,
13, 58, 64, 67, 68, 71-72, 79, 86, 95,
D 101, 102, 103, 226, 234, 244, 245,
249, 424, 429, 563-564, 571
Dana-Farber Cancer Institute, 68 managed care environment, 285-287
Data sources and methods, this study multiple chronic conditions and, 50
additional activities, 393-394 in nonhospital settings, 69-70
commissioned papers, 394 palliative care, 7, 51-52, 55, 58-74, 97,
committee description, 391-392 103, 287-292
literature review, 392 preferences of family and patients and,
public meetings, 392-393, 395-405 55, 56
written public testimony, 443-454 primary care, 49-52, 70
Death and dying prognosis problem, 47, 87-92, 101-102
Last Acts campaign, 33, 353, 361 providers, 48-49
perceptions of, 445-446 public testimony on, 448-451
public venues for discussions of, quality of care, 55-57, 74-87, 275-302
352-355 race/ethnicity and, 49, 60
site of, 33-34, 54, 81, 119, 468 recommendations, 10, 103-104
trajectories and symptoms, 22, 30-31, research needs and funding, 32, 97-100
46-48 strategy for changing, 40
Death Cafe, 352, 354, 420 trajectory and symptom challenges 46-
Death over Dinner, 352, 354, 420 48, 49
“Death panels” controversy, 12, 120, 132, transitions between care settings, 49-52,
366-370 55, 100
DeathWise, 352, 354, 420 unwanted care, 55-58
Decision making by patients and families Dementias
aids, 170-172 advance care planning, 137, 171,
biases and heuristics, 167-168 215-216
choice architecture, 168-169, 188 Alzheimer’s disease, 36, 37, 38, 61, 165,
default choices on advance directives, 215, 295, 311, 444, 456, 509
169-170 challenges in end-of-life care, 49, 96,
and patient-centered care, 166-172 266
research needs, 188
chronic illness with, 48
shared, 1, 4, 17, 80, 99, 118, 136, 138, costs of care, 37, 270, 303, 328, 509-
166-172, 173, 174, 182, 188, 320 510, 517
n.32, 326, 331, 351 hospice care, 74, 81
stages of change theory and, 188 hospitalizations, 54, 56-57, 298, 324,
video materials and, 171-172 328

594 INDEX
managed care enrollees, 286, 412 Emergency department services

nursing home residents, 54-55, 81, 249, and advance directives, 134, 179, 212,
286, 303, 324, 328 426
palliative care, 54-55, 303 availability of alternatives, 467, 493,
prognosis predictions, 88, 91 519, 520, 569
quality of care, 38, 49, 54-55, 56-57, costs/expenditures, 281-282, 569
74, 79, 249, 286, 411, 412 database, 537-538
racial and ethnic minorities, 49 deaths, 548, 559-560
training of caregivers, 249 end-of-life care challenges, 49, 52, 57,
trajectories and symptoms, 48 94
transitions for care, 54, 328 palliative care providers, 243
trends, 38, 144, 215 pediatric care, 98, 282, 304, 432, 559-
Depression, 35, 37, 45, 48, 54, 63, 65, 560, 569, 571
67, 71, 72, 73 n.12, 74, 96, 120, prevention, 309-310, 314, 321-322, 331,
136, 137 n.15, 138, 161, 162, 167, 526
213, 266, 284, 290, 311, 450, 499, quality of care, 281-282, 453, 560
509 reimbursement policies, 281-282, 296,
Direct care workers, 14, 248-249 467
Disease management programs, 54, 186, research needs, 432, 526-527, 571
212, 304, 305, 306 utilization, 17, 52, 73, 74, 211, 264,
Do-not-hospitalize orders, 123, 152, 286 266, 267, 281-282, 290, 304, 314,
Do not resuscitate (DNR), 60, 121, 123, 467, 519, 520
136, 149, 152, 154-155, 174, 176, End-of-Life Nursing Education Consortium
184, 448 (ELNEC), 222, 231-232, 251, 415
Dresser, Rebecca, 150 Pediatric Palliative Care curriculum, 429
Dual eligibility, 271-272, 273, 278, 286, End of Life/Palliative Education Resource
287, 298, 302-303, 310, 315, 328, Center, 222, 416
386, 474-475, 522 End-of-life trajectories and symptoms, 22,
Duchenne’s muscular dystrophy, 147 30-31, 46-48
Durable power of attorney for health care, End-stage renal disease (ESRD), 64, 88,
118 n.1, 122, 124, 130, 145, 366 471, 472, 547, 559
n.14, 386 Engage with Grace, 352, 354, 420
EpicCare, 184
ePrognosis, 92
E Evidence-based care, 1, 4, 6, 12, 19, 22, 28,
31, 64, 77, 84, 98, 190, 305, 310,
Early Periodic Screening, Diagnosis, and 316, 362, 370, 410, 419
Treatment, 477-478 Excellus BlueCross BlueShield, 68, 127,
Educate, Nurture, Advise Before Life Ends 175, 320 n.31, 358
(ENABLE), 73 Expenditures for care (see Costs of end-of-
Education and training (see Patient, family, life care; Financing and organization
or caregiver education; Professional of end-of-life care; specific payors)
education and development in end-
of-life care; Public education and
engagement) F
direct care workers, 14, 248-249
family caregivers, 2, 15, 53, 76, 97, 138, FACE Intervention, 143 n.19
245, 311, 330 Faculty Scholars Program, 222, 416
Education in Palliative and End-of-life Care Family (see also Caregivers, family)
(EPEC) Program, 222, 229-230, 251, advance care planning effects, 2, 11,
415, 428 136, 137-139, 367

INDEX 595
bereavement services/support, 28, 58, Five Wishes, 142, 356, 426

68, 69, 72, 78-79, 96, 98, 165, 187, Florida
233, 241, 242, 244, 321, 411, 422, hospice care, 74
423, 424, 426, 428, 430, 431, 432, pediatric palliative care program, 68,
453, 535, 552, 564, 571 427, 554, 569
clinician communication with, 164-166 utilization and spending, 458, 569
defined, 28, 45-46 Food and Drug Administration, 70 n.10,
financial considerations, 145, 212 230, 381
importance of, 45 Footprints Model, 143 n.19
participation in advance care planning, Foundation for Advanced Education in the
18, 128, 143, 150, 152, 154, Sciences, 232-233
164-166 Functional limitations and disabilities
social and support services, 68 aging and, 37
Family and Medical Leave Act of 1993, 97, and costs of care, 22-23, 36, 37, 266,
452 491-494, 516-517
Federation of State Medical Boards of the disability rates, 37-38
United States, Inc., 413 and end-of-life trajectory, 47
Financing and organization of end-of-life Futile care, 233, 288, 364-365, 359
care (see also Accountable care
organizations; Costs of end-of-life
care; Health insurance coverage, G
private; Medicaid; Medicare;
George Washington University, 227
Reimbursement policies and
Geriatric care, 10, 50, 52, 227 n.5, 232,
methods)
282
ACA reforms, 4, 272, 314-321, 412
Geriatric Resources for Assessment and
concurrent care, 475-478
Care of Elders (GRACE), 313 n.28
Financial Alignment Initiative, 315-316
Goodman, Ellen, 124
home- and community-based services,
Gundersen Health System, 141
315
hospice and home care, 319
impacts of, 455-456
incentive policies and coordination of H
care, 275-302, 329-330 Hammes, Bernard, 181
integrated models, 466-467 Harvard Medical School Program in
long-term care, 16, 266, 268, 271, 274, Palliative Care Education and
275, 278, 279, 287, 296-303, 306, Practice, 228
315-316, 320, 327-328, 475, 478- Health and Retirement Study (HRS), 38,
479, 498, 499 47, 89-90, 91-92, 119, 144 n.20, 270
major programs, 271-275 n.7, 501, 502, 503, 504, 506, 508,
palliative care, 33, 59, 61, 68, 98, 287- 509, 513, 514, 519
292, 329 Health care agents, 11, 18, 118, 122, 124,
payers, 459-460 126, 129-132, 134, 135, 136, 137-
private-sector initiatives, 321-322 139, 142, 145, 147, 150, 157, 158,
and quality of care, 467-469 160, 164-166, 167, 173, 174, 175,
recommendations, 16-17, 330-331 176, 179, 183, 184, 185, 186, 187,
reform impacts, 469-478 189, 211, 212, 215, 216, 349, 385,
research needs, 326-328 386, 387, 389
social services integration, 309-314, 329 Health Care Financing Administration, 33
state policy reforms, 322-323 Health Information Technology for
transparency and accountability, 324- Economic and Clinical Health
326, 329 (HITECH) Act, 184, 387

596 INDEX
Health Information Technology Policy aides, 14, 248, 249, 251, 273, 296, 297,
Committee, 184-185 321, 386, 388
Health insurance coverage, private (see also hospices, 7, 63, 65, 75, 125, 294
Medicaid; Medicare; Reimbursement services, 75, 273, 299, 308, 323, 427,
policies and methods) 452, 456, 457, 458, 459-460, 461,
ACA and, 419, 460 462, 523, 525
concurrent care, 321-322, 476 Homeless people, 146-147, 300
essential health benefits, 460 Honoring Choices, 354, 356, 357, 421
programs and expenditures, 274 Hopkins Competency Assessment Test, 145
Health Insurance Portability and n.22
Accountability Act (HIPAA), 172, 247 Hospice and Palliative Nurses Association,
Health literacy, 156-157 78, 84, 223, 242-243
Health records Hospice and Palliative Nurses Foundation,
advance directive incorporation, 121, 242-243, 410
180, 181 Hospice care (see also Palliative care)
electronic, 17, 181-185, 188, 331 access to, 10, 30, 62, 103
Health Resources and Services accountable care organizations and, 292,
Administration (HRSA), 81-82, 408 472-473, 479
Healthcare Cost and Utilization Project, advance care planning and, 212
537-538 cancer patients, 30, 61, 62, 65, 295,
Healthcare Effectiveness Data and 393, 465, 476, 520
Information Set (HEDIS), 468 certification, 14, 48, 59 n.6, 100
Heart Bypass Center Demonstration, 471 costs, 292-295, 519-522
Heart disease/failure, 7, 30, 31, 34, 36, 37, definitions, 18, 27, 60-61
38, 48, 54, 64, 70, 456, 500 delivery of, 46, 48-49, 50, 54, 56, 59,
Henry J. Kaiser Family Foundation, 367 60-62, 63, 65, 100, 101
Hispanics dementia patients, 54, 56, 74, 81
advance care planning, 60, 151, 154, 188 growth of, 8, 20, 60-62, 100, 102-103
costs of care, 497, 506, 507, 569 hospital programs and referrals, 61,
direct care workers, 249 63
hospice use, 153, 569 in-home care, 7, 63, 65, 75, 125, 294
insurance payor, 495, 507 interdisciplinary team approach, 101,
life expectancy, 34 102, 103
literacy levels, 156 life expectancy and eligibility, 8, 30,
mortality data, 536, 537 294, 321, 387, 388, 412, 426
preferences for end-of-life care, 60, 149, and longevity/survival, 30, 62, 73 n.12,
154, 348 74, 101
site of death, 153, 553-554 Medicaid and, 62, 244, 298, 319,
treatment differences, 49 426-428, 460, 463, 465, 477-478,
utilization of services, 506, 513 569
HIV/AIDS, 61, 62, 97, 142, 143, 356 n.5, Medicare benefit, 30, 59, 62, 83, 88, 96,
444, 476 102, 154, 238, 247, 273, 274, 277,
Hollywood Health and Society, 353 285, 292-295, 388, 411, 412, 457,
Home (see In-home care) 459, 460, 463-466, 470, 475-476,
site of death, 33, 34, 63, 73 477, 478, 480, 522
Home- and community-based services, 94, in nursing homes, 61, 65, 74, 81, 152-
298, 299-302, 312-313, 315, 316 153, 278, 295, 298, 462, 465-466,
Home health 479
agencies, 49, 50, 61, 70, 71 n.11, 74, open-access, 522-523
98, 246, 249, 306, 422, 424, 432, pediatric services, 61-62, 98
461-462 in prisons, 62

INDEX 597
professional education and development, complex chronic conditions and, 266,

13, 14, 48, 221, 222, 224, 226-229, 554, 556
232, 233, 237-247, 249-251 concurrent care, 72
professional/provider support for, 32-33 continuity of care, 68
prognosis and, 88, 90, 92, 102 costs of care, 22, 266, 280-281, 512-
public perceptions of, 50 513, 564, 565-567, 568, 569
and quality of care, 8, 50, 62, 65, 74, deaths/dying in, 33, 69, 78, 81, 94
77 delivery environment, 280-282
quality-of-care measures and reporting, hospice programs and referrals, 61, 63
7, 77-78, 79, 81, 83-85, 86, 411 lengths of stay, 73, 557, 564, 567
and quality of life, 30, 63, 65 Medicare policies and, 52-53, 277, 280-
race/ethnicity and, 60, 61-62, 150, 153 281, 512-513, 520
recommendations, 10 nursing home residents, 52, 54, 281,
referrals to, 8, 50, 54, 55, 60, 70, 86 286, 297, 298, 307, 324, 462, 470,
reimbursement policies, 30, 59, 62, 83, 501, 502
88, 96, 102, 154, 238, 247, 273, palliative care services, 7, 8, 15, 27, 59,
274, 277, 285, 292-295, 319, 388, 60, 61, 63-64, 65, 66, 68, 69, 71-72,
408, 411, 412, 457, 459, 460, 462, 84, 85, 98, 100, 562-564
463-466, 470, 475-476, 477, 478, patient education interventions, 53, 73
480, 522 pediatric care, 68, 98, 537-539, 554,
research needs, 97 556-559, 562-567, 568, 569
satisfaction with care, 62, 74, 75, 80 prognosis and predicted probability of
and site of death, 33-34 death, 90, 91, 92, 565-567, 568
specialty/specialists, 2, 7, 10, 13, 14, 20, quality of care, 57, 78, 81, 84, 85,
71 280-281
staffing, 10, 62 readmissions, 52, 53-54, 70, 304, 306,
treatment approach, 2, 7, 8, 9, 18, 30, 314, 319, 471, 473, 520, 523, 547
60-61, 62, 63, 86 reimbursement policies, 53, 277, 280-
utilization of, 63 281, 319, 471
volunteers, 62 satisfaction with care, 56-57, 73, 74, 75
Hospice Experience of Care Survey, 83-84, transitions between care settings, 52-53,
411 54, 57, 100
Hospice Item Set, 83, 411 unwanted, uncoordinated care, 56-57,
Hospice Medical Director Certification 266
Board, 240 Huntington’s disease, 215-216
Hospice Quality Reporting Program, 83,
411
Hospital at Home® project, 70, 523 I
Hospital environment (see Emergency
Implantable cardioverter defibrillator (ICD)
department services; Hospitals/
deactivation, 78, 79, 80
hospitalization)
In-home care (see also Caregivers, family)
Hospital Readmissions Reductions Program,
communications technology and, 70
53
costs, 37, 38
Hospitals/hospitalization (see also
hospice, 7, 63, 65, 75, 125, 294
Emergency department services;
Medicare and, 319, 523
Intensive care/critical care)
nurses, 70, 273, 292, 294, 298 n.18,
accountability, 84
321, 539, 552, 553, 571
accreditation, 84
palliative care, 70, 72, 73, 74, 290, 294,
admissions, 17, 33, 74, 90
320, 321-322, 328
children’s hospitals, 64, 68, 564-565,
preference for, 94
569

598 INDEX
quality, 38, 65, 70 J

reimbursement policies, 97
satisfaction with, 70 John A. Hartford Foundation, 227 n.5
Informed Medical Decisions Foundation, Johns Hopkins University, 70, 523
354 n.4 Joint Commission, 84, 409
Initiative for Pediatric Palliative Care, Josiah Macy Jr. Foundation, 234
429
Institute for Healthcare Improvement, 420
Instrumental activities of daily living K
(IADLs), 93, 248, 491-492 Kids’ Inpatient Dataset (KID), 537-538,
Intensive care/critical care 539
admissions, 51 Kubler-Ross, Elisabeth, 60
advance directives, 126, 151, 214,
216
appropriateness of care, 130, 280-281, L
288, 557
clinician communication, 138, 165, 230, Last Acts campaign, 33, 353, 361
428 Liaison Committee on Medical Education,
deaths, 68, 81, 520, 557 226, 231
dementia patients, 49 Life Cycle Model of Advance Care
family conferences, 164, 213, 236 Planning
financial issues, 140, 267, 280-281, 288, for children, 187
289, 291, 329-330, 364-365, 458, in final year of expected life, 187
506, 517 at initial diagnosis, 186
futile care, 288, 364 milestone specific, 185
impacts on family, 138 primary care setting, 186
nurses/nursing, 232 situation-specific, 186
palliative/hospice care and, 63, 66, 73, at worsening health, 186-187
74, 77, 187, 279, 289, 291, 329, Life expectancy (see also Prognosis)
457, 463, 473, 519, 520 and assisted suicide, 363
pediatric and neonatal, 68, 89, 230, 428, at birth, 30, 34, 35-36, 308
429, 542, 557 and hospice eligibility, 8, 30, 294, 321,
and preferences of patients, 94 387, 388, 412, 426
primary care and, 51 palliative care and, 62, 167, 560
professional education and training, patient preferences for discussing,
232 152
and prognosis/survival status, 89, 90, and pediatric palliative care eligibility,
92, 119, 165, 512 424, 426
quality of care measures, 77, 79 predicting, 89, 91, 160
race/ethnicity and, 49, 151, 506 race/ethnicity and, 34
transitions between services and, 298 LIVESTRONG Foundation, 414
utilization, 33, 214, 267, 279, 329-330, Living Well at the End of Life poll, 347
458, 512, 517, 519, 520, 557 Living wills, 117, 120, 122, 124, 132, 133,
Interdisciplinary team approach, 71-72, 136 n.13, 147, 175, 181, 184, 366
101 n.14, 369, 385, 387
International Classification of Diseases Long-term care (see also Nursing home
(ICD) codes, 536, 537, 538, 546 residents)
Interprofessional collaboration, 226, 228, acute care, 27, 48, 59-60, 306, 388-389,
229, 230, 234, 252, 428 458
advance care planning, 164, 172, 174,
179, 218

INDEX 599
and concurrent care, 297 Massachusetts General Hospital, 72

coordination of services, 304-305, 308, MD Anderson Cancer Center
470 Supportive and Palliative Care Service,
costs of care, 273, 274, 296, 300-301, 65, 67
458, 502 Texas Community Bus Rounds program,
coverage of services, 459-460 383
defined, 387-388 Meals and nutrition services, 287, 309, 310,
disability rates and, 37-38 312-313, 330
dual-eligible individuals, 273, 278, 302- Measuring What Matters initiative, 410
303, 457, 462, 522 Medicaid (see also Centers for Medicare &
environment, 296-303 Medicaid Services)
family needs, 312-313 ACA and, 16, 268, 275, 315, 319, 412,
financing, 16, 266, 268, 271, 274, 275, 427, 469, 477-478
278, 279, 287, 296-303, 306, 315- and advance directives and advance care
316, 320, 327-328, 475, 478-479, planning, 121, 323, 464
498, 499 age-related costs, 499
home- and community-based, 94, 298, Cash & Counseling program, 97, 313
299-302, 312-313, 315, 316 and concurrent care, 278, 319, 427,
in hospice, 295-296, 462 477-478
institutional, 297-298, 310 costs and expenditures, 16, 268, 271,
insurance, 274, 315 273, 291, 298, 300-301, 302, 303,
interdisciplinary care teams, 102 312, 459, 495, 497, 498, 499, 502,
Medicare and, 275, 287, 297-298, 522
459-460 data for health services research, 525,
need for, 37 539
palliative care, 27, 59, 69, 389 demonstration and waiver authority, 308
professional education and training, and direct care workers, 249
229-230, 233, 247 disease management programs, 305-306
quality of care, 247, 278 dual eligibility, 271-272, 273, 278, 286,
social services, 329 287, 298, 302-303, 310, 315, 328,
spiritual care, 247 386, 462, 474-475, 522
Longevity/survival electronic health record incentives, 184
advance care planning and, 136 enrollees, 271-272, 273, 299, 459
cancer patients, 62, 69, 215 financing, 269, 271, 315-316, 330, 412,
concurrent and, 72 463-464, 467, 474, 522
cost of care and, 22 health insurance coverage, 273, 275,
hospice care and, 30, 62, 73 n.12, 74, 412, 426-427, 459-460, 477-478
101 Home and Community Based Services
palliative care and, 62, 68, 69, 72-73, program, 298, 299-302, 315
98, 101, 215, 322 n.33, 560 home health, 279, 320, 459-460
hospice care, 62, 244, 298, 319, 426-
428, 460, 463, 465, 477-478, 569
M impacts of policies, 278-279, 298, 569
long-term-care/nursing home assistance,
Managed care 10, 16, 54, 171, 264, 268, 271, 272,
and advance care planning, 298 n.18
273, 275, 277, 278-279, 285, 295,
for dual-eligible individuals, 286, 412 296, 297-298, 302, 306, 307, 312,
Massachusetts 324, 388, 448, 456, 457, 458, 459-
hospice care, 74 460, 461, 462-463, 465, 470, 479,
Pediatric Palliative Care Network 498, 499, 501, 502, 503, 525
program, 68, 424, 425 managed care, 285-286, 303, 323, 326

600 INDEX
and mental health services, 284-285 and costs of care, 139, 268, 276, 279-
nursing home care, 16, 273, 275, 277, 280, 283-284, 451, 504, 519-523
278-279, 285, 457, 462 deaths of covered population, 275
PACE program, 287, 302, 522 demographic characteristics related to
and palliative care, 68, 291, 295, 301- spending, 506-507, 508
302, 427-428, 463, 519 demonstration programs, 469-478
racial difference in costs/payments, 495, dual eligibility, 271-272, 273, 278, 285-
497 286, 287, 298, 302-303, 310, 315,
reforms needed and proposed, 266- 328, 386, 462, 474-475, 522
267, 270, 320-321, 426-428, 469, economic impacts, 269-270
479 and electronic health records, 184
reimbursement policies, 263, 264, 278- enrollment/eligible population, 16, 36,
279, 282, 283, 284-285, 298, 316, 271, 459-460, 503
323, 329, 330, 464, 465, 474, 479 expenditures, 16, 23, 36, 37, 139, 264,
social services coverage, 309, 312 267, 268, 270-273, 275, 280-282,
spending down for eligibility, 271-272, 285, 289, 303, 304, 306-307, 457,
296 458-459, 497, 498, 499, 502-503,
state policies, 323, 424, 427, 459-460 504-512
tax base, 269 family caregiver benefits, 296-297
transparency and accountability, 17, fee-for-service policy, 16, 33, 36, 37,
324 52-53, 139, 265, 269, 276, 277, 278,
Medical Expenditure Panel Survey data, 279-280, 282, 283, 285, 316, 317,
489, 490, 492, 493, 494, 495, 496, 318, 322, 327, 328-329, 386, 388,
497, 499, 501, 503, 514, 515 409, 461, 466, 467, 469, 470, 472,
Medical homes, 51-52, 82, 302, 303, 314, 473, 503, 504-505, 523
469 financial incentives, 16, 184, 363
Medical orders, defined, 122 funding/tax base, 269, 271
Medical Orders for Life-Sustaining geographic variation in spending, 306-
Treatment (MOLST), 17, 123, 175, 307, 510-512
177, 179, 182, 183, 331, 358 health characteristics related to
Medical records (see Health records) spending, 508-510, 512, 516, 517,
Medicare (see also Centers for Medicare & 525
Medicaid Services) home care, 319, 523
ACA-authorized changes, 314, 315-316, hospice benefit, 30, 59, 62, 83, 88, 96,
319, 469, 478 102, 154, 238, 247, 273, 274, 277,
accountable care organizations, 317, 285, 292-295, 319, 388, 408, 411,
318-319, 472 412, 457, 459, 460, 462, 463-466,
and advance care planning, 121, 124, 470, 475-476, 477, 478, 480, 522
139, 464, 510 and hospitalization, 52-53, 277, 280-
ancillary services, 284 281, 512-513, 520
bundled payment model, 314, 316, 327- limitations of payment approaches,
328, 455, 458-459, 469-475, 479 460-466
burden of illness in eligible populations, long-term care, 275, 287, 297-298,
16, 33, 36, 37, 52-53, 139, 265, 503, 459-460
504-505 managed care, 466-457 (see also
Care Choices Model, 412, 476 Medicare Advantage)
community-based services, 318 mental health treatment, 284-285
concurrent care coverage, 154, 319, 412, out-of-pocket expenditures by
427, 475-476, 477 beneficiaries, 458
and coordination and continuity of care, PACE integrated model, 287, 467
304, 305, 308, 315-316, 330

INDEX 601
palliative care financing, 412, 463-464, N

476
physician services, 282-284, 464 National Alliance for Caregiving, 96, 354
and quality of care, 286-287, 293-294, n.4
307, 324, 326 National Assessment of Adult Literacy, 155,
quality reporting requirements, 7, 77-78, 156
79, 81, 83-85, 86, 411 National Association for the Advancement
reform contexts, 265, 266-267, 329-330, of Colored People (NAACP), 33
469-478 National Association of Social Workers, 78,
SEER-Medicare database, 51 243-244, 417
Shared Savings Program, 315, 317, 318, National Board for Certification of Hospice
468, 472, 473 and Palliative Nurses, 241, 417
skilled nursing benefit, 272, 278, 297, National Cancer Institute, 67, 158, 232,
298, 306, 307, 324, 388, 457, 451, 423
457, 458, 459, 461, 462, 470, 479, National Center for Health Services
498, 499, 501, 502 Research (NCHSR), 299
sustainable growth rate, 283-284 National Center for Health Statistics, 367,
traditional Medicare, 272-273, 388-389, 430, 536
459, 461-463 National Commission on Fiscal
training requirements for direct care Responsibility and Reform, 267
workers, 349 National Committee for Quality Assurance
transitions among services, 409 (NCQA), 82, 84-85
transparency and accountability, 17 National Comprehensive Cancer Network,
and utilization of services, 16, 279, 280- 73, 214
281, 306-307, 408, 456-459, 501, National Consensus Project for Quality
512-513 Palliative Care (NCP), 9, 78, 79, 84,
Medicare Advantage, 50-51, 53, 276, 278, 85, 87, 214, 246, 410
285-286, 309, 320, 321, 322, 326, National Council on Aging, 127
327, 388, 459, 466, 502 National Data Set, 430
Medicare-Medicaid Coordination Office, National Family Caregiver Support
272, 315, 412 Program, 97, 310
Medicare Modernization Act of 2003, 388 National Framework and Preferred Practices
Medicare Payment Advisory Commission for Palliative and Hospice Care
(MedPAC), 272, 286, 295, 320, 413, Quality, 61, 172-173, 185, 410,
465, 466, 479 425-426
Medicare Prescription Drug Improvement National Healthcare Decisions Day, 124,
and Modernization Act of 2003 354, 356-357, 421
(MMA), 463-464, 466 National Hospice and Palliative Care
Mental health services, 284-285 Organization, 67, 78, 84-85, 153,
Methodist Hospital System, Houston, 247 175, 223, 352, 411, 421, 422, 424,
Minnesota 425, 428, 430, 521
Honoring Choices series, 354, 356-357, National Institute of Nursing Research, 33,
421 39, 97, 418, 419, 431
hospice services, 74 National Institutes of Health (NIH), 33, 39,
nursing home deaths, 33 98, 232-233, 418, 430, 535-536
Rural Palliative Care Initiative, 408 National Long-Term Care Survey, 37
Mortality data (see also Death and dying) National Palliative Care Research Center,
age and causes of death, 31, 34 78, 100, 419, 431
cancer, 31, 34, 35, 36, 214, 456, 546 National Rural Health Association
pediatric, 31, 34, 536-537, 540-542, 551 Technical Assistance Project, 408,
Murray, Kenneth, 24 421, 425

602 INDEX
National Quality Forum (NQF), 61, 77-78, scope-of-practice laws, 323

79, 80, 81, 83, 84-85, 98, 172, 187, specialties, 240-243, 251, 389, 417, 429
410, 411, 423, 425-426, 468-469 spiritual care, 246
Nationwide Emergency Department Sample staffing of hospital-based pediatric
(NEDS), 537-538, 539, 559 palliative care programs, 563-564
New Mexico, 70, 363 transitional care, 52, 53, 54
New York State Nursing Home Compare, 468, 480
Community Conversations on Nursing home residents
Compassionate Care, 122, 358 advance care planning and directives,
CompassionNet, 68 126, 129, 132, 151, 152, 171, 176,
MOLST program, 123, 175, 177, 178, 177, 181, 182, 188, 216, 241, 286,
179, 182, 183, 358 448, 468
PACE program, 177 alternative care for, 299, 301, 302, 303,
pediatric palliative care, 68, 427 310, 311, 312, 467, 522
site of death, 553 clinician communication with, 216, 224
utilization and costs, 152-153, 291, 519, concurrent care, 278
553 costs of care, 37, 272, 273, 277, 296,
North Carolina, 68, 123, 421, 427 310, 312, 457, 465, 489, 490, 492,
North Dakota, 68, 427, 458 493, 494, 495, 496, 497, 498, 499,
Northeast Ohio Medical University, 227 501-502, 509, 514, 515, 517, 522
Nurses/nursing decision-making capacity, 119, 137, 189
advance care planning role, 185, 186, dementias/cognitive impairment in, 54,
389, 448 81, 216, 286, 295, 324, 328, 509
case/care managers, 53, 294, 304, 322, hospice care, 61, 65, 74, 81, 152-153,
476 278, 295, 298, 462, 465-466, 479
certifications, 14, 15, 27, 48-49, 59, hospitalizations, 52, 54, 281, 286, 297,
242, 252, 417, 429 298, 307, 324, 462, 470, 501, 502
communication with patients, 129, 162, language barriers, 60
226, 231, 235 long-term care insurance, 274, 498, 499
delivery of care, 42, 50, 53, 70 managed care for dually eligible
discharge advocate, 53 individuals, 286, 412
education of patients and caregivers, 53, Medicaid policies and payments, 16, 54,
73 273, 275, 277, 278-279, 285, 312,
faculty development, 222, 229-230, 231- 324, 457, 462, 470, 498, 499
232, 415, 416 Medicare policies and payments, 272,
home visits, 70, 273, 292, 294, 298 278, 297, 298, 306, 307, 324, 388,
n.18, 321, 539, 552, 553, 571 451, 457, 458, 459, 461, 462, 470,
intensive care, 232 479, 498, 499, 501, 502
interprofessional collaboration, 226, palliative care, 7, 27, 55, 58, 59-60, 66,
228, 229, 230, 234, 252, 428 69-70, 72, 102, 243, 288, 479
medical orders, 122, 175, 389 preferences for treatment, 16, 176, 177,
palliative and hospice care, 8, 10, 14, 216
27, 52, 59, 71, 85, 100, 101, 103, prognosis, 90, 91
222, 223, 226, 231, 232, 237-238, racial, ethnic, and cultural differences,
240-243, 251, 252, 294, 321, 322, 152-153, 496, 497
385, 389, 409, 417, 423 quality of care, 54-55, 74, 81, 247, 277,
primary care, 50, 286 278, 286, 324, 326, 468, 480, 526
professional education and development, research needs, 328, 526
13, 14, 15, 221, 222, 223, 225, 226, satisfaction with care, 74, 75
228, 229-230, 231-232, 237-238, shortage of care for, 37, 328
240-243, 251, 415, 416, 423, 428 site of death, 33, 54, 81, 119, 468

INDEX 603
skilled nursing facilities, 10, 16, 171, certification, 14, 48, 84, 100, 221,
272, 277, 278, 297-298, 306, 307, 228-229, 238-240, 241, 242, 243,
388, 448, 456, 457, 458, 459, 461, 247-248, 250-251, 418
462-463, 465, 479, 501, 502, 503, chaplains, 8, 10, 67, 247-248, 418
525 clinical competency domains, 225
social services for, 329 communication skills and, 64, 226, 233,
spiritual care, 247 235-237, 288, 290, 431
standards of care, 54, 409 community-based, 70, 282, 292,
state regulation and oversight of 301-302
facilities, 323 conceptual models of, 560-561
training of caregivers, 69-70, 248-249, concurrent care, 7, 58, 73, 277, 287,
311 293, 295, 297-298, 321, 322
transitions to and from hospitals, 52, 54, consultation and counseling on, 60, 61,
277, 281, 286, 297, 298, 328, 449 64, 66, 137, 143, 155, 160-161, 164,
utilization of care, 306, 307, 456, 501 167, 170, 172, 187
continuity of care, 68
coordination across settings, 63, 68, 71,
84, 322
O
core tasks, 561-562
Office of the Assistant Secretary for cost savings and expenditures, 74, 264,
Planning and Evaluation (ASPE), 299 274, 287-292, 327, 329, 519
Older Americans Act, 97, 275, 279, 309, definitions, 27, 59, 67, 86, 389
310, 312, 366 n.14 delivery of, 7, 51-52, 55, 58-74, 97,
Open Society Institute, 222 103, 287-292
Oregon demand for, 4, 25, 62-65, 70
physician-assisted suicide, 349, 354, dual eligibility and, 303
363, 421 in emergency rooms, 243
POLST program, 121, 123, 178, evidence for effectiveness, 62, 72-74,
217-219 101
Organisation for Economic Co-operation family support and role in, 58, 64, 67,
and Development (OECD), 308 68, 69, 86, 95, 96, 245, 249
financing and policy, 33, 59, 61, 68, 98,
287-292, 329
gaps in knowledge, 8, 570-571
P
geriatric care and, 52
Palliative care growth of specialty, 8, 60, 62-65, 100,
access to, 4, 10, 50, 64, 86, 102, 103, 102-103, 221, 250
320-321 guidelines, 9, 67, 73, 78, 84, 87
accountable care organizations and, 292, home-based, 70, 72, 73, 74, 290, 294,
472-473, 479 320, 321-322, 328
advance care planning, 60, 66, 137, 143, and hospice, 2, 7, 10, 18, 58, 59, 60-62,
155, 160-161, 169, 172-173, 175, 70
215 n.13 hospital-based, 7, 8, 15, 27, 59, 60, 61,
approach and components, 8, 9, 55, 58- 63-64, 65, 66, 68, 69, 71-72, 84, 85,
60, 63, 65-67, 68, 85, 86, 560 98, 100, 290, 291, 292, 562-564
basic, 7 n.2, 14, 20, 27, 52, 59, 70, 221, and intensive care, 63, 66, 73, 74, 77,
224, 225-226, 229, 233, 235, 238, 187, 279, 289, 291, 329, 457, 463,
251, 252, 385, 416 473, 519, 520
biopsychosocial model of care, 62-63 interdisciplinary team approach, 7, 10,
cancer patients, 7, 62, 65, 67, 68, 69, 13, 58, 64, 67, 68, 71-72, 79, 86, 95,
70, 72, 73, 77, 171, 215, 228, 290, 101, 102, 103, 226, 234, 244, 245,
294, 414, 423, 519, 546, 560 249, 424, 429, 563-564, 571

604 INDEX
long-term care settings, 27, 59, 69, 389 social workers, 8, 10, 14, 15, 59, 222,
and longevity/survival, 62, 68, 69, 72- 243-244
73, 98, 101, 215, 322 n.33, 560 specialty/specialists, 2, 7, 13, 14, 15, 20,
Medicaid and, 68, 291, 295, 301-302, 27, 32-33, 48, 50, 52, 59, 61, 71, 74,
427-428, 463, 519 86, 100, 222, 224, 228, 233, 238-
medical homes, 51-52 240, 241, 242-243, 246, 247-248,
Medicare and, 412, 463-464, 476 250, 251, 252-253, 289, 389, 415,
in nonhospital settings, 7, 51-52, 59, 60, 417, 418, 429, 533
69-70, 289-292 spiritual care, 67, 163, 246-247
nurses/nursing, 8, 10, 14, 27, 52, 59, 71, staffing, 59, 563-564
85, 100, 101, 103, 222, 223, 226, support for, 62-64, 65, 223
231, 232, 237-238, 240-243, 251, timeliness of referral, 7, 80, 81, 101
252, 294, 321, 322, 385, 389, 409, transparency and accountability, 74, 76,
417, 423 84
in nursing homes, 7, 27, 55, 58, 59-60, and utilization of hospital/emergency
66, 69-70, 72, 102, 243, 288, 479 services, 69, 73, 74, 281, 290, 329
palliative care, 74, 264, 274, 287-292, VA benefit, 61, 72, 274
327, 329, 519 Palliative Care Leadership Centers, 234-235
pediatric, 67-69, 71 n.11, 98, 223-224, Palliative Care Research Cooperative
232, 235-236, 292, 429, 535, 542- Group, 100, 419
543, 545-546, 560-564, 570-571 Palliative Prognostic (PaP) score, 89-90, 91
performance measures, 84 Parkinson’s disease, 37, 88, 295, 444
pharmacists, 14, 59, 245-246 Partners Health System, 183
physician specialists, 238-240 Patient, family, or caregiver education, 53,
preferences for, 77, 169 73, 76, 184, 185, 305
professional education and development, Patient Aligned Care Team (PACT), 53
13, 14, 48, 221, 222, 224, 226-229, Patient-centered, family-oriented care (see
232, 233, 237-247, 249-251 also Delivery of end-of-life care)
prognosis and, 89-90, 91, 92, 233 core values, 69
public awareness and engagement, 18, decision making by patients and families
347, 348-349, 351, 353, 358, 364, and, 166-172
368 defined, 28, 31, 45
quality of care, 7, 8, 72, 74, 76-87, 96, diversity of population and, 69
211, 264, 325-326 high-quality characteristics, 82-83
and quality of life and mood, 1-2, 7, 30, medical homes, 51-52, 82, 302, 303,
45, 46, 58, 59, 62, 65, 69, 72-73, 74, 314, 469
98, 101, 233, 290 primary care and, 68
race/ethnicity and, 60, 240 Patient-Centered Outcomes Research
recommendations, 10, 14-15, 103, Institute (PCORI), 98-99, 419
252-253 Patient Protection and Affordable Care Act
rehabilitation therapists, 14, 247 (ACA), 25
reimbursement policies, 283, 285, 287- accountable care organizations, 279-
292, 294, 301-302, 320, 328 280, 310, 317-319
research needs and funding, 97, 98-99, and advance care planning, 12, 120,
100, 228 132, 366-370
satisfaction with care, 62, 64, 69, 70, bundled payment approaches, 316, 327-
75, 290, 322 328, 469-475
screening/assessment, 7-8, 65-68, 71, 77, and concurrent care, 319, 320, 412,
89, 92, 101 427, 475-476, 477
shortage of specialists, 224, 251 cost containment, 264, 265, 314,
social services integration, 313-314, 330 315-316

INDEX 605
“death panels” controversy, 12, 120, concurrent care, 319, 427, 477-478,
366-370 533-534, 567, 569-570
and delivery of end-of-life care, 4, 97 costs of care, 564-570
and electronic medical records, 184 data sources and needs, 536-539
Financial Alignment Initiative, 315-316 delivery of care, 67-69
financial and organizational changes emergency room visits, 98, 282, 304,
under, 4, 272, 314-321, 412 432, 559-560, 569, 571
gaps in, 319-321 gaps in knowledge, 570-571
home- and community-based services, geographic variations, 553-554, 555
302-303, 315, 319 guidelines, 67
hospice care, 83, 295, 319, 320, 411, hospice care, 61-62, 98
412, 413, 469, 478, 480 hospitalization, 68, 98, 537-539, 554,
insurance coverage, 419, 460 556-559, 562-567, 568, 569
long-term care, 315, 320, 475 illness trajectories and clinical
Medicaid expansion, 16, 268, 275, 315, experience, 548, 550
319, 412, 427, 469, 477-478 intensity and invasiveness, 557-559
Medicare changes, 314, 315-316, 319, intensive care, 68, 89, 230, 428, 429,
469, 478 542, 557
Medicare-Medicaid coordination, and longevity/survival, 68
412 multiple complex chronic conditions, 34,
palliative care services, 412 547
Patient-Centered Outcomes Research pain and symptoms, 560
Institute, 98-99, 419 palliative care, 67-69, 71 n.11, 98, 429,
pay-for-performance, 319 535, 542-543, 545-546, 560-564,
proposed changes, 320-321 570-571
quality of care, 264, 265, 314, 327-328, prognosis and predicted probability of
469 death, 565-567, 568
and research funding, 98-99, 419 race/ethnicity and, 552-554, 555
training requirements for direct care research needs, 98
workers, 249 social and support services, 68
transitions between care settings, 97 terms and concepts, 534-536
and transparency and accountability, When Children Die report
324, 329 recommendations, 422-432
Patient Self-Determination Act, 121 Pediatric Health Information System (PHIS)
Pay-for-performance (P4P), 319, 474, 480 data, 538, 539, 557, 558, 564, 565,
Payment systems (see Health insurance 566, 567, 568, 569
coverage, private; Medicaid; Pediatric Palliative Care Network, 424,
Medicare; Reimbursement policies 425
and methods) Perceptions, public
PEACE (Prepare, Embrace, Attend, clinician communication, 447
Communicate, Empower) Project, 79, cost drivers, 487, 526
84-85, 410 death and dying, 20, 30-31, 149, 445-
Pediatric Early Care program, 423 446, 451
Pediatric end-of-life care (see also Children) living wills, 117
advance care planning, 68, 134, 136, politicization of end-of-life care and,
141-144, 146, 173, 184, 187, 188, 367, 446
425-426, 429, 432 and preference for care, 117, 149
assessment scales, 67-68 prognosis, 164-165
clinical data, 538-539 public education and, 371, 451
complex chronic conditions, 34, 546- quality of care, 20, 80, 21-22, 247
547, 551-552, 554-559 quality of life, 146, 147

606 INDEX
racial, ethnic, and cultural differences, Premier Perspective Database (PPD) data,
149-150 538-539, 565
shared decision making, 80 Presbyterian Healthcare Services, 70
Performance measurement benchmark, 317, President’s Council on Bioethics, 125, 150
472 Primary care
Pew Research Center, 347, 352 advance care planning, 186
Religion and Public Life Project, basic palliative care, 7 n.2, 14, 20, 27,
148-149 52, 59, 70, 221, 224, 225-226, 229,
Physician-assisted suicide, 362-363 233, 235, 238, 251, 252, 385, 416
Physician Data Query (PDQ®), 67, 423 and coordination and continuity of care,
Physician Orders for Life-Sustaining 49-51, 68
Treatment (POLST) (see also Medical defined, 49 n.1
orders, defined), 17, 121, 123, 172, delivery of, 49-52, 70
173-179, 180, 182, 183, 184, 187, geriatrics, 10, 50, 52, 227 n.5, 232, 282
188, 189-190, 217-219, 323, 331, and hospital admissions, 51
358, 389, 448 pediatrics, 68
Physicians (see also Clinician-patient providers and roles, 49-50
communication) Professional education and development in
quality of end-of-life care, 282-284 end-of-life care
treatment preferences of, 23-24 advance care planning, 181, 225, 227,
Pioneer accountable care organization 237
program, 317, 318, 468, 471, 472, chaplains, 15, 222, 228, 230, 247-248,
473 252, 418
Practice-based research networks, 99 communication skills, 13-14, 225, 226,
Preferences of patients and families 229, 230, 231, 232 n.11, 233, 234,
advance care planning and, 11, 12, 13, 235-237, 241, 250, 251-252, 428,
18, 125-127, 144-155, 189, 369, 510 451
cancer and, 55, 132, 133, 140, 165, continuing medical education, 222, 229-
171, 214, 215, 510 231, 239, 243, 244, 251, 415, 428
clinician discussion with family and cross-cutting considerations, 233
patients, 11, 13, 20, 350-352 curriculum, 13, 221-222, 223, 226-233,
and costs of care, 2, 15, 21, 510 234, 237, 245, 250, 251, 415, 416,
delivery of care, 55, 56, 94 417, 428, 429, 451
honoring, 31, 119 domains of clinical competence, 225
nursing home residents, 16, 176, 177, faculty development, 13, 222, 228, 229-
216 230, 231-232, 236, 237, 415, 416,
palliative care, 77, 169 431
physician preferences compared to, funding/fellowships, 32, 221, 222, 226,
23-24 235, 238, 239, 240, 244, 415, 416,
by population, 141-157 417, 428
public education and, 19 hospice care, 13, 14, 48
public perceptions of death and dying impediments to changing culture of care,
and, 117, 149 13, 225-237
and quality of care, 2, 16-17, 22, 77, infrastructure, 223, 251
307-314 interprofessional collaboration, 13, 226
quality of life, 11, 24 knowledge base of palliative care, 223
race/ethnicity and, 152-154 licensure and certification, 14, 48, 59 n.6,
recommendations, 10, 16-17, 19 84, 100, 221, 228-229, 238-240, 241,
site of death, 33-34, 119 242, 243, 247-248, 250-251, 418
supportive care versus acute services, long-term care, 229-230, 233, 247
22

INDEX 607
medical education, 222-223, 226-231, Program of All-inclusive Care for the

238-240 Elderly (PACE), 177, 287, 302, 303,
nurses, 13, 14, 15, 221, 222, 223, 225, 467, 479, 522
226, 228, 229-230, 231-232, 237- Program to Enhance Relational and
238, 240-243, 251, 415, 416, 423, Communication Skills, 230, 428
428 Project Compassion, 352, 354, 420
palliative care, 13-15, 69-70, 102, Project on Death in America (PDIA), 32,
221-253 222, 244, 416
pharmacists, 14, 245-246 Public education and engagement (see also
physician specialists, 238-240 Campaigns, public education and
progress and continuing needs, 221-225, engagement)
250 advance care planning, 18, 19, 20, 32,
public health schools, 232-233 121-124, 125, 172-173, 345, 346-
public testimony on importance, 451 347, 352-353, 354, 355, 356-357,
recommendations, 14-15, 252-253 358, 359, 360, 370, 371, 420, 421
rehabilitation therapists, 14, 248 attitude trends, 347-348
social workers, 14, 243-244 and cancer care, 365
team roles and preparation, 13, 237- choices of care, 348-350
249, 251 climate and venues for discussions of
undergraduate and graduate medical death and dying, 352-355
education, 226-229 controversial issues, 362-370
Prognosis knowledge about end-of-life care,
APACHE tool, 92 347-352
cancer care and, 30, 88, 89-90, 91, 294, palliative care, 18, 347, 348-349, 351,
466 353, 358, 364, 368
CARING criteria, 89-90, 91 preferences for care, 350-352
Cheng factors, 89-90, 92 public testimony on importance, 451
clinician-patient communication, 92, recommendation, 19-20, 370-371
160-161 social media, 365-366
dementias, 88, 91 terminology and, 348-350
ePrognosis, 92
Health and Retirement Study, 91-92
hospitalization and predicted probability Q
of death, 90, 91, 92, 565-567, 568
Quality-adjusted life-year (QALY), 325 n.34
implications of, 30, 87-88
Quality Assessment and Performance
intensive care and, 89, 90, 92, 119, 165,
Improvement Plan, 83, 411
512
Quality Improvement Organization
and Medicare Hospice Benefit, 88, 90,
Program, 53, 79
92, 102
Quality Incentive Program, 471
nursing home residents, 90, 91
Quality-of-care measurement and reporting
and palliative care, 89-90, 91, 92, 233
ACOVE initiative, 79, 84-85, 410
PaP score, 89-90, 91
Carolinas Center for Medical Excellence,
pediatric care and, 565-567, 568
79
predictive models, 89-92
Centers for Medicare & Medicaid
public perceptions of, 164-165
Services requirements, 79, 83-84,
research needs, 98
411, 469
“surprise” question, 92
current efforts, 77-79, 80-82
uncertainties in, 30, 47, 88-89, 92
evidence-based performance measures,
Prognosis in Palliative Care Study (PIPS),
84-85
90, 91, 99
feeding tubes in dementia patients, 79

608 INDEX
hospice, 7, 77-78, 79, 81, 83-85, 86, long-term care/nursing homes, 54-55,
411 74, 81, 247, 277, 278, 286, 324,
intensive care/critical care, 77, 79 326, 468, 480, 526
limitations of current efforts, 76-77, managed care environment, 285-287
80-82 Medicare and, 286-287, 293-294, 307,
Measuring What Matters initiative, 324, 326
84-85 palliative care, 7, 8, 72, 74, 76-87, 96
Medicare requirements, 7, 77-78, 79, patient, family, or caregiver education
81, 83-85, 86, 411 and, 76
National Committee for Quality physician services, 282-284
Assurance assessment, 82 preferences of patients and families, 2,
National Consensus Project for Quality 16-17, 22, 77, 307-314
Palliative Care Clinical Practice proposed core components, 85-87
Guidelines, 9, 78-79, 84, 85, 87, public perceptions of, 20, 21-22, 80, 247
214, 246, 410 public testimony on, 448-451
National Quality Forum criteria, 77-78 reimbursement policies and, 4, 16, 25,
opportunities for enhancing, 82-85 137, 269 n.6, 276, 279-280, 318,
PEACE Project, 79, 84-85, 410 451-452, 473, 504-505, 508
research needs, 98 Quality of life
satisfaction indicator, 80, 518 advance care planning, 147, 148
site-of-death measure, 81 cancer and, 72, 73, 290
transparency, 28 concurrent care and, 72, 412
Quality of end-of-life care FACT-L scale, 72
ACA and, 264, 265, 314, 327-328, 469 hospice care and, 30, 63, 65
accountable care organizations and, 84, palliative care and, 1-2, 7, 30, 45, 46,
317, 318, 468, 469, 473 58, 59, 62, 65, 69, 72-73, 74, 98,
advance care planning and, 135-137, 101, 233, 290
176-178 Quinlan, Karen Ann, 363-364
ambulatory care environment, 282-285
approaches to improving, 76-77
cancer care, 77, 81, 82, 411 R
chaplains and chaplaincy services and,
Racial, ethnic, and cultural differences (see
247
also specific populations)
in clinician-patient communication, 79,
advance care planning, 11, 49, 125, 148-
190
155, 188
coordination of care and, 31, 76, 81, 82,
clinician-patient communication and,
303-306
149-150, 152, 154, 155, 522
costs of care and, 15, 22, 275-302
and continuity of care, 155-156
delivery of care and, 55-57, 74-87,
and costs of care, 494-497
275-302
delivery of care, 49, 60
dementias and, 38, 49, 54-55, 56-57, 74,
diversity trends in the United States, 38
79, 249, 286, 411, 412
hospice patients, 60, 61-62, 150, 153
emergency departments, 281-282, 453,
and intensive care utilization, 49, 151, 506
560
life expectancy, 34
financing and organization of care and,
Medicaid enrollees, 495, 497
467-469
nursing home residents, 152-153, 496,
hospice, 8, 50, 62, 65, 74, 77
497
hospital environment, 57, 78, 81, 84,
palliative care, 60, 240
85, 280-282
pediatric care, 552-554, 555
improvement approaches, 76-77
quality of care, 153
in-home care, 38, 65, 70

INDEX 609
RAND Corporation, 79, 410 in-home care, 97

Recommendations limitations of current approaches,
advance care planning, 12-13, 17, 19, 460-469
20, 32, 190-191, 370, 371 managed care, 285-287
clinician-patient communication, 12-13, Medicaid, 263, 264, 278-279, 282, 283,
190-191 284-285, 298, 316, 323, 329, 330,
delivery of care, 10, 103-104 464, 465, 474, 479
financing care, 16-17, 330-331 palliative care, 283, 285, 287-292, 294,
hospice and palliative care, 10, 14-15, 301-302, 320, 328
103, 252-253 pay-for-performance, 319, 474, 480
professional education and training, 14- physician services, 282-284
15, 252-253 population-based payment model, 318
public education and engagement, 19- public testimony on importance,
20, 370-371 451-452
Reimbursement policies and methods and quality of care, 266-267, 273, 275-
ACA reforms, 280, 315-316, 478 302, 328-329, 409, 461
accountable care organizations, 279- and referrals to hospice, 276-277, 285
280, 317-318, 468, 471, 472, 479 and satisfaction with care, 316
ancillary services, 284-285 Shared Savings Program, 315, 317, 318,
advance care planning, 17, 117, 121, 468, 472, 473
188-189, 320, 323, 331, 368, 369- and transitions between services, 52, 54,
370, 464, 468 277, 281, 286, 297, 298, 328, 449
bundled payment model, 314, 316, 327- and utilization of services, 279
328, 455, 458-459, 469-475, 479 Religion (see also Spirituality and spiritual
cancer treatments, 65 n.8 support)
capitation, 278, 279-280, 285-287, and advance care planning, 147-149,
315-316 178-179, 212
in clinician-patient communication, 452 Research needs
and costs of care, 137, 269 n.6, 276, advance care planning, 187-189, 432
279-280, 318, 451-452, 473, 504- delivery of care, 32, 97-100
505, 508 emergency services, 432, 526-527
diagnosis-related group methodology, 461 family caregivers, 96, 98
dual eligibility and, 271-272, 273, 278, financing care, 326-328
286, 287, 298, 302-303, 310, 315, funding, 28, 32, 39
328, 386, 474-475, 522 hospice care, 97
emergency services, 281-282, 296, 467 “learning health care system” approach,
fee-for-service policy, 16, 33, 36, 37, 99
52-53, 139, 265, 269, 276, 277, 278, National Institutes of Health approval
279-280, 282, 283, 285, 316, 317, bodies (study sections), 39
318, 322, 327, 328-329, 386, 388, nursing home care, 328, 526
409, 461, 466, 467, 469, 470, 472, palliative care, 97, 98-99, 100, 228
473, 503, 504-505, 523 pediatric care, 98
financial incentives and fragmentation of practice-based research, 99
services, 17, 275-302, 329-330 quality of research, 99
hospice care, 30, 59, 62, 83, 88, 96, Respecting Choices, 141, 143 n.19, 172-
102, 154, 238, 247, 273, 274, 277, 173, 179-181, 212
285, 292-295, 319, 388, 408, 411, Respite care, 97, 243, 274, 292, 302, 309,
412, 457, 459, 460, 462, 463-466, 310, 312-313, 330, 424, 427, 450,
470, 475-476, 477, 478, 480, 522 452, 464, 476, 539, 569
hospital care, 53, 277, 280-281, 319, Rhode Island, nursing home deaths, 33
471 Rivlin, Alice, 265

610 INDEX
Robert Wood Johnson Foundation, 32, 408 family caregivers, 4, 9, 10, 15, 73 n.12,
Community-State Partnerships to 86, 97, 98, 233, 279, 304, 309,
Improve End-of-Life Care, 33 310-311
Critical Care End-of-Life Peer and health outcomes, 308-309
Workgroup, 77, 229, 231-232, 234, home retrofitting, 311
323 integrated approaches, 313-314, 329,
Last Acts initiative, 33, 353, 361 330
long-term care and, 329
meals and nutrition services, 312
S Medicaid coverage, 309, 312
nursing home residents, 329
Satisfaction with care pediatric care, 68
advance care planning and, 135-137 professional education and development
clinician-patient communication and, in end-of-life care, 243-244
158, 164, 167, 290 respite care, 97, 243, 274, 292, 302,
coordination of care and, 76, 322 309, 310, 312-313, 330, 424, 427,
concurrent care and, 322 450, 452, 464, 476, 539, 569
hospice care, 62, 74, 75, 80 and satisfaction with care, 138, 309, 313
hospital care, 56-57, 73, 74, 75 transportation, 313
in-home care, 70, 322, 523 Social Services Block Grant, 275
indicators of, 75 Social Work Hospice and Palliative Care
measuring, 80 Network, 223, 244, 416
palliative care, 62, 64, 69, 70, 75, 290, Social Work Leadership Development
322 Awards, 222, 416
patient, family, or caregiver education Social Work Summits on End-of-Life and
and self-management and, 76 Palliative Care, 244
quality-of-care measurement, 76, 78, 80, Social workers, 7, 10, 15, 27, 48, 49, 52,
518 56, 57, 59, 60, 71, 101, 103, 185,
reimbursement approaches and, 316 186, 230, 237-238, 243-244, 246,
social services and supports and, 138, 251, 252, 289, 292, 321, 385, 409,
309, 313 428, 444, 450, 563-564
transitions between services and, 76 Soros Foundation, 32
Saunders, Cicely, 60 Special Needs Plan, 50-51, 467
Schiavo, Teresa Marie, 364 Spirituality and spiritual support, 28, 140,
Shared decision making, 1, 4, 17, 80, 99, 163, 247
118, 136, 138, 166-172, 173, 174, State policies and programs
182, 188, 320 n.32, 326, 331, 351 advance care planning, 323
Skilled nursing facility benefit, 10, 16, 171, Stroke, 36, 37, 38, 46, 88, 456, 508, 509
272, 277, 278, 297-298, 306, 307, Study charge and approach, 25-29
388, 448, 456, 457, 458, 459, 461, guiding principles, 28
462-463, 465, 479, 501, 502, 503, Study to Understand Prognoses and
525 Preferences for Outcomes and Risks
Social Security Disability Income, 271 of Treatments (SUPPORT), 32, 510
Social services and supports Sulmasy, Daniel, 163
accountable care organizations and, 310 Supplemental Nutrition Assistance Program
bereavement, 28, 58, 68, 69, 72, 78-79, (SNAP), 300-301
96, 98, 165, 187, 233, 241, 242, Surveillance, Epidemiology, and End Results
244, 321, 411, 422, 423, 424, 426, (SEER)-Medicare database, 51
428, 430, 431, 432, 453, 535, 552, Survey of Income and Program
564, 571 Participation, 38
education and training of caregivers, 311 Sutter Health Advanced Illness Management
essential services, 309-314 program, 140, 322, 408, 412

INDEX 611
T U.S. Department of Veterans Affairs (VA),

17, 235, 275
Texas, 74, 183, 237, 364, 414 advance care planning model, 146
Community Bus Rounds program, 393 Coordinated-Transitional Care (C-TraC),
Thibault, George, 234 53-54
Toolkit of Instruments to Measure End-of- Faculty Leader Project for Improved
Life Care, 410 Care at the End of Life, 60-61, 72,
Transitional Care Model, 53 222, 234 n.12, 274, 291, 330
Transitions between care settings National Center for Patient Safety, 81
ACA and, 97 palliative care benefit, 61, 72
and advance care planning Patient Aligned Care Teams, 53
documentation, 134 Program of Comprehensive Assistance to
Aetna Transitional Care Model, 53 Family Caregivers, 97
burdensome, 52-55 Utilization of services
communication across settings, 53 advance care planning and, 140
and continuity and coordination of care, cancer and, 519
49-52, 53, 54, 100 emergency department services, 17, 52,
dementias and, 54, 328 73, 74, 211, 264, 266, 267, 281-282,
and hospital readmissions and ER visits, 290, 304, 314, 467, 519, 520
52-53, 54, 57, 100, 298 expenditures, 456-458, 512-513,
and intensive care, 298 525-526
Medicare nursing home policy and, 52, family caregivers and, 267, 309
54, 277, 281, 286, 297, 298, 328, 449 fragmentation of care and, 9, 50-51, 86
nurse managers, 52, 53, 54 geographic variations, 305-307, 458-459
and reimbursement policies, 53 hospice, 63
and satisfaction with care, 76 intensive care, 33, 214, 267, 279, 329-
Transparency and accountability, 10, 16, 330, 458, 512, 517, 519, 520, 557
17, 28, 39-40, 82, 84, 103-104, 146, nursing home residents, 306, 307, 456,
265, 269 n.6, 321, 324-325, 329, 501
330, 365 palliative care and, 69, 73, 74, 281, 290,
329
screening high-cost patients by patterns
U of, 525-526
Understanding Treatment Disclosure (UTD),
145 n.22
University of California, Los Angeles, V
Medical Center, 79 Vulnerable populations, 28, 38-39
University of California, San Francisco, 232
University of Rochester, 227, 232
University of Southern California’s W
Annenberg School for
Communication and Journalism, 353 Warren Alpert Medical School of Brown
University of Wisconsin, 414 University, 236
Unwanted and unnecessary care, 12, 21, Washington State
55-58, 266, 288, 298 pediatric palliative care program, 68
U.S. Department of Health and Human physician-assisted suicide, 362
Services (HHS), 82, 120-121, 126, 267, primary care, 50-51
301, 324, 387, 475-476, 478, 480, 491 utilization and costs, 554-555
U.S. Department of Housing and Urban When Children Die report
Development, 275 progress since and remaining gaps,
422-432

612 INDEX
Whites (non-Hispanic) site of death, 153, 553-554

advance care planning, 125, 128, 152, treatment differences, 49
154-155 utilization of services, 506
costs of care, 495, 496, 497, 506, 507, Withholding/withdrawal of life support, 88
569 n.17, 121, 147, 166, 363-364
health literacy, 157 Writers Project, 353
hospice use, 153 World Health Organization, 58, 67
life expectancy, 34
population distribution, 149
preferences for end-of-life care, 148-149, Y
322, 350
Yale School of Medicine, 237

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Dying in America: Improving Quality and Honoring Individual

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Committee on Approaching Death: Addressing Key End-of-Life Issues

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COMMITTEE ON APPROACHING DEATH:

PHILIP A. PIZZO (Co-Chair), Former Dean and David and Susan

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STEPHEN G. PAUKER, Professor of Medicine and Psychiatry, Tufts

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This report has been reviewed in draft form by individuals chosen

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Charlie Sabatino, American Bar Association Commission on Law and

Although the reviewers listed above provided many constructive com-

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leaders hesitate to speak on a subject that is profoundly consequential for

Harvey V. Fineberg, M.D., Ph.D. Victor J. Dzau, M.D.

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Death is ultimately a deeply personal human experience that evokes dif-

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on conclusions and recommendations that we hope will further shape the

Philip A. Pizzo, Co-Chair

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Several individuals and organizations made important contributions

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2 THE DELIVERY OF PERSON-CENTERED,

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3 CLINICIAN-PATIENT COMMUNICATION AND ADVANCE

4 PROFESSIONAL EDUCATION AND DEVELOPMENT 221

5 POLICIES AND PAYMENT SYSTEMS TO SUPPORT

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6 PUBLIC EDUCATION AND ENGAGEMENT 345

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2 THE DELIVERY OF PERSON-CENTERED,

3 CLINICIAN-PATIENT COMMUNICATION AND ADVANCE

5 POLICIES AND PAYMENT SYSTEMS TO SUPPORT