Cancer, Culture and Communication

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Cancer, Culture, and
Communication

Edited by

Rhonda J. Moore
National Institutes of Health
Bethesda, Maryland

and

David Spiegel
Stanford University School of Medicine
Stanford, California

KLUWER ACADEMIC PUBLISHERS

NEW YORK, BOSTON, DORDRECHT, LONDON, MOSCOW
eBook ISBN: 0-306-48007-7
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Contributors

Ludovico Balducci, MD is Chair of the interdisciplinary Oncology Program

at the H. Lee Moffitt Cancer Center and Research Institute in Tampa,
Florida. His research interests include cancer prevention, cancers in the life
course, and the impact of culture and aging.

William Brietbart, MD is Chief of the Psychiatry Service at Memorial Sloan-

Kettering Cancer Center. Dr. Brietbart’s interests include pain in the terminally
ill, quality of life, and spirituality and meaning after chronic illness.

Phyllis Butow, PhD is Associate Professor of Medical Psychology Unit at the

University of Sydney, Australia. Dr. Butow’s interests include psychological
factors that affect people who have already developed cancer, quality of life,
and cultural differences in clinician-patient communication in oncology.

Edzard Ernst, MD, PhD, FRCP (Edin.) is Professor of Complementary

Medicine, the Institute of Health and Social Care Research, Peninsula
Medical School, the Universities of Exeter and Plymouth. Dr. Ernst has writ-
ten extensively on CAM, including the Desktop Guide to Complementary
and Alternative Medicine (Mosby, 2001). His research interests also include
evidence-based medicine, clinical trials, and toxicity in CAM therapies.

Edward J. Estlin, MD is Macmillan Consultant in Paediatric Oncology at

Royal Manchester Children’s Hospital in Manchester, England. His interests
include clinical trials, pediatric oncology, QOL, and the development of
novel therapies for children with drug-resistant tumors.

Christopher Gibson, PhD is on staff in the Department of Psychiatry at

Memorial Sloan-Kettering Cancer Center, where he is coordinating several
studies examining the efficacy of meaning-centered interventions for cancer

v
vi Contributors

patients. In addition, Dr. Gibson is an Assistant Professor of Psychology at

John Jay College of Criminal Justice as well as a Senior Staff Psychologist
at the Center for Cognitive Behavioral Psychotherapy. He has published in
the areas of end-of-life issues, behavioral medicine, and anxiety disorders.

Carolyn Cook Gotay, PhD is Associate Professor of Cancer Research at

the University of Hawaii. Her research interests include quality of life in cul-
turally diverse patient populations.

Samuel Mun Yin Ho, PhD is Associate Professor in the Department of

Psychology, the University of Hong Kong, and Honorary Associate
Director, Centre on Behavioral Health, the University of Hong Kong.

Darlene Johnson (MBA) is Program Administrator for the Senior Adult

and Radiation Oncology Programs at the H. Lee Moffitt Cancer and
Research Institute in Tampa, Florida; she also holds a Research Associate
Faculty Appointment at the University of South Florida. She is a Fellow of
the American Academy of Medical Administrators and Editor-in-Chief of the
Journal of Oncology Management. Her research interests include quality of
life, patient satisfaction, outcomes in senior adult patients, and patients
receiving radiation treatment for cancer.

Javier Kane, MD is Assistant Professor of Pediatrics at the University of

Texas Health Science Center, Medical Staff Member, Cancer and Blood
Disorders, Center Medical Director, Supportive and Palliative Care Program,
Christus Santa Rosa Children’s Hospital.

Patricia T. Kelly, PhD is Medical Geneticist at Saint Francis Memorial

Hospital in San Francisco, California. Dr. Kelly’s interests include clinical
and medical genetics, bioethics, risk assessment, and the impact of these
factors on clinician-patient communication in oncology.

Collen McClain is a doctoral candidate at Fordham University. Her disserta-

tion project, which is funded by a National Service Award by the NIH, is inves-
tigating the importance of religioisity and spirituality on immune functioning
in people with terminal cancer. During her time at Fordham working with the
MSKCC research team, she has researched the importance of spirituality and
religiosity on coping with illness and death.

Rhonda J. Moore, PhD is a cultural anthropologist and postdoctoral fel-

low in the Department of Epidemiology at The University of Texas M.D.
Anderson Cancer Center in Houston, Texas. Dr. Moore’s interests include
Contributors vii

cultural issues that impact oncology care, the impact of pain and suffering
in advanced stage cancers, and social inequality in cancer care.

Joseph O’Donnell, MD is Professor of Medicine and Dean of the Medical

School at Dartmouth School of Medicine. Dr. O’Donnell’s interests include
medical education, cancer pain, and quality of life.

Judith A. Paice, PhD, RN, FAAN is Research Professor of Medicine at

Northwestern University. Dr. Paice’s research interests include pharmacologi-
cal management of pain, adverse effects of analgesic therapies, complemen-
tary techniques to relieve pain, and quality pain management and research.

Richard Penson, MD, MRCP is Assistant in Medicine and Director

of Clinical Research in Medical Gynecologic Oncology at Massachusetts
General Hospital and Instructor in Medicine, Harvard Medical School.
His interests include gynecologic oncology, novel therapeutics, and psycho-
social oncology.

Hayley Pessin, PhD is currently overseeing the study at the Memorial

Sloan-Kettering Cancer Center assessing the influences on end-of-life
attitudes among terminally ill cancer patients. Her research interests in
the area of palliative care are focused on examining end-of-life despair,
reasons for living and dying, the burden and benefit of research participa-
tion, the impact of cognitive impairment on desire for death, and develop-
ing psychotheraphy interventions that target the needs of terminally ill
patients.

Nathalie Rapoport is a visiting scholar at the Psychosocial Treatment

Laboratory, School of Medicine, Stanford University. After completing her
medical studies and a master’s degree in psychology in France, she gradu-
ated in medical psychology from Tel-Aviv University. She has more than ten
years of clinical experience in France and Israel in the field of medical psy-
chology and behavioral medicine. Her main interests are psychosocial
interventions for the medically ill and doctor-patient interactions in chronic
disease.

David Spiegel, MD is the Willson Professor and Associate Chair of

Psychiatry and Behavioral Sciences and Director of the Center for
Integrative Medicine at Stanford University School of Medicine. Dr. Spiegel
is an internationally recognized expert on psychosocial issues in breast
cancer patients. His other interests include trauma, hypnosis, dissociation,
and complementary and alternative medicine in cancer patients.
viii Contributors

Pierre Saltel, MD is Chief of the Psycho-Oncology Service, Comprehensive

Cancer Center Leon-Berard, Lyon, France, and general secretary of the
French Psycho-Oncology Society. His areas of interests include early detec-
tion of psychological distress in cancer patients, psycho-oncology net-
working, and the continuous training of professionals.

Ami Shah received her BA degree from Columbia University. After four-
teen years teaching mathematics and computing at Saint Ann’s Private
School in Brooklyn, New York, she went on to pursue a career in medicine
at the Mount Sinai School of Medicine in New York, where she is currently
in her second year. As of this writing, she is considering the fields of psy-
chiatry, pediatrics, and family medicine as possible future specialities.

Claire Stevinson, BSc, MSc is currently working toward a doctorate with

the assistance of a Cancer Research UK scholarship. At the time she coau-
thored Chapter 10 with Edzard Ernst, she was a research fellow in the
Department of Complimentary Medicine at the University of Exeter.
Currently she is at the University of Bristol, Department of Exercise and
Health Sciences, where she teaches and researches cancer rehablitation
with a focus on physical activity.

John Weisburger, MD, PhD is Senior Member and Director Emeritus of

the American Health Foundation in New York. Dr. Weisburger is an
internationally known expert in the fields of cancer prevention and control,
and dietary and nutritional factors related to cancer risk.
Foreword

As a young man from time to time I found myself sitting with my left leg
upon a hassock, for no obvious reason. One day, however, it came to me
that quite unconsciously I had been imitating the posture of my grandfa-
ther who in his later years had had a bad leg. Now that I am older, there
is reason enough, for that leg was the site of a vein that some years back
short-circuited a block in my coronary vessels. Actions like mine as well as
habits or codes of behavior can be inherited without the intervention of
DNA, so to speak, and so can attitudes – from Republicanism to abhorrence
of spiders, or a distaste for fatty foods. In the very same way, I am
convinced, many symptoms – digestive ones high on my list – are passed
on from one generation to another not by the genetic code, but as
appropriate- or at least customary-ways to respond to stress, embarrassment,
or other situations, just like voting for the Democratic Party.
Heartburn, recently promoted to the status of a disease by gastroen-
terologists and pharmaceutical manufacturers as GERD (Gastroesophageal
Reflux Disease), offers a pertinent example. That new designation has
turned heartburn into a thing, reified as the philosophers say, changed from
a symptom that once was a badge of industry to a disease that must be
guarded against and tamed. An often harmless symptom that could be
ignored has been made into an icon of disease that must be treated forever,
no matter the evidence that about half the people who complain show no
evidence of its organic/structural basis. More than likely it seems to me, if
your father or mother had heartburn when aggravated (mine did not), you
will learn that complaint as a family/familiar response, and the ability of
your lower esophageal sphincter to guard against acid reflux may not really
matter.
If the family matters, culture has an even broader influence in the
genesis of symptoms and the response to disease or disability. Long ago,
Walter Alvarez of the Mayo Clinic wisely observed that symptoms, like

ix
x Foreword

many other habits, were transmitted as a cultural/idiosyncratic reaction

from one generation to the next That seems self-evident once you think
about it; it may have been easier in the innocently more homogeneous
early 20th century for physicians to understand and empathize with the
emotional responses of people much like them. The change in American
society over the past century, however, has turned the founding British
culture into a cosmopolitan Americanism that is still refining itself. That is
certainly true of the medical scene. In the 1920s at Yale Medical School,
Dean Milton Winternitz, though an early pioneer in social medicine, sym-
pathetic to the new science of psychoanalysis, and himself a Jew, contin-
ued the racial restrictions on admission: “Five Jews, 2 Italians, no Negroes.”
At Harvard Medical School even in the early 1940s, we students were all
white men, largely because of the conviction that after medical school
women would get married and so be lost to the active care of patients. The
change in these two medical bastions by the 21st century reflects the diver-
sity that now has so improved America. More than half the students at Yale
and Harvard are women, there are many blacks, Asian-Americans abound,
gays are welcomed as faculty and students, and one can go on and on. The
elderly, the aged, alone face prejudice that remains unremitting because, it
is argued, everyone ages.
To the happy intermingling of cultures under the American flag there
has been added the contributions of science to medical practice. Science
and technology have let physicians cure diseases that in the past killed so
many, and have led doctors to believe that medicine has turned into a
science, that rules are everything and that medical practice can be modu-
lar and “evidence-based” with guidelines. Every patient resembles another
and diseases are deemed concrete entities to be dealt with by the “best
evidence.” Doctors sometimes forget that much more of their time outside
a hospital setting is spent caring for patients who feel and suffer and fear,
and for that intuition and emotion are needed. The right hand of fellow-
ship, the close relationship of physician and patient, and, in this existential
crisis of cancer, faith in caretaker or Creator, all help to relieve pain and
suffering and to reduce anxiety. A myriad of writers remind us that we
“health care” professionals treat diseases, but we care for people.
Let me explain those quotation marks in the preceding. Nurses and
physicians and other caretakers have been denominated by that new
category, but one can wonder whether we confer good health or more
likely simply eliminate disease some of the time. Health may be a gift from
the Creator. Here let me also observe how much I prefer the word “person”
to “patient,” for the stereotypical patient does not exist, any more than the
much-abused “case.” Both are jargon terms, useful as shorthand but threat-
ening to lose the person in his or her disease.
Foreword xi

Indeed, people with cancer risk losing their identity in the over-
whelming portentousness of that diagnosis, a label that changes everything.
To call someone a “recovered cancer patient” affixes a label which ignores
the person. It’s like the stamp of schizophrenia: one never shakes the adjec-
tive “schizophrenic” which arouses so much skepticism in caretakers . Once
so labeled, a “cancer patient” – a doctor even cannot exchange that tag for
a nicer one at “Lands’ End.” Physicians with cancer have complained that
they are never again regarded as wholly healthy, always a suspicion that
they may not be available in an emergency. Such opprobrium is rarely
discussed, yet it adds to the burden of those who have survived cancer, the
young woman with breast cancer far more than the elderly man with
prostate cancer.
Such observations are not far from the idea which motivates this book,
that culture plays a crucial role in the transactions of medicine, whether the
doctor/patient relationship, the sick person’s response to therapy, or the
cultivation of valetudinarianism. Thanks to our postmodern diversity,
women now are free to prefer female gynecologists, African-Americans
justly choose a physician of their own background, and as a physician
looking at 80, I like to think that I have special understanding of the prob-
lems and opinions of sick people over 65. The powerful drugs with which
cancer can be assailed should not blind physicians to the importance of
cultural background, and individual experience, in the care of people with
cancer. That is the focus of this book that you are about to read. Empathy
counts. And it helps.
“God writes straight with crooked lines,” is the way Pope John 23
described the ebb and flow of customs and ideas. Over the past two
centuries, mainstream medicine with its reliance on science and reason has
gained sway, and rightly so because the nostrums of alternative ways could
not challenge the very real cures of science. In the past few decades,
however, even mainstream physicians have begun to confess that these
triumphs conquer diseases but do not much relieve the disabilities and
symptoms that come from sorrow, stress, or the daily events of life on
earth. Our victories do not set straight passions gone awry. Antidepressants
may cure sadness, but they do not relieve sorrow, nor is it likely that
antioxidants can cure love. With newfound diversity has come the recog-
nition that many people come to their practitioners for reassurance, the
right hand of fellowship, advice and consolation from an experienced
expert. They come for comfort and not always for cure.
It is sad that modern physicians have made so little use of their own
powers of persuasion, the powers of comforting words to help their
patients, the power of the placebo response in the patient–physician
encounter. Here the editors and writers prefer the phrase “context effect”
xii Foreword

as a stand-in for placebo, but they have much to say, explicit and implicit,
about the importance of the placebo-response in people with cancer.
Placebos do help, and sometimes in controlled trials almost as much as the
agent under study. As the authors realize, more than pills, placebos are
procedures, diagnostic studies, the routines of diagnosis that provide
certainty. But they are also words of comfort, rhetoric as well as potions
and pills.
Pain is part of life, and does not always rattle along the C-fibers to
yield to anodynes. Pain may come from the wounds of cancer, but it has
many other wellsprings, and among them are bitterness, tribulation, and
anger. Medical measuring and counting and the ever-growing attention to
statistics and to evidence – based medicine, run the risk of failing to give
enough attention to that phenomenon, to teach it to our students. They
need to learn how much culture as well as heredity, the mindset as well as
the molecular disposition, play in the management of the sick. Such matters
and more are brilliantly discussed in this powerful book that emphasizes
the humanity of our patients and strengthens us as physicians, nurses,
and – yes – as “health-care” workers.
HOWARD SPIRO M.D.
Professor Emeritus, Yale School of Medicine
New Haven, Connecticut
Acknowledgments

The completion of a book is never an individual endeavor. Others always

assist along the way. At this time we thank those individuals who were sup-
portive of this edited volume. We begin by thanking our collaborators
for their enthusiasm, commitment, and support of this project. We could not
have completed this edited volume without your fine insight and the wisdom
of your words. We thank Mariclaire Coutier, Mary Panarelli, Joe Zito, Herman
Makler, and Bill Tucker of Kluwer Academic/Plenum Publishers. Their
words of encouragement made this dream a reality.
As a postdoctoral fellow at the University of Texas M.D. Anderson
Cancer Center, I (R.M.) could not have completed this edited volume with-
out the support of a National Cancer Institute (NCI) Cancer Prevention fel-
lowship, Grant # 3R25 CA5770-8S2. I gratefully acknowledge the support of
Dr. Sonya Springfield, Belinda Locke, and Bobby Rosenfeld at the NCI.
I am also indebted to the encouragement of my mentors Fadlo R. Khuri, MD,
Professor of Hematology, Oncology, Medicine, Pharmacology, and
Otolarygngology, Biomeyer Chair in Translational Cancer Research,
Winship Cancer Institute, Emory University, and Robert M. Chamberlain,
PhD, Deputy Chair, Epidemiology Department at the University of Texas
M.D. Anderson Cancer Center (MDACC). I am especially grateful to Fadlo
for allowing me access to enhance my clinical expertise in the department
of Thoracic/Head and Neck Medical Oncology at MDACC. I also thank the
many patients with cancer and their families who allowed me to share and
learn more about their lives before cancer, their explanatory models of ill-
ness, death, survival, and victory. This volume is a promise kept and is ded-
icated to you all. I also thank Sherry Widdoes, Aretha Johnson, Roxanne
Dolan, Wes Browning, and April Bennington from the Research Medical
Library at the University of Texas MDACC in Houston, Texas, for their sup-
port for this endeavor. Last and certainly not least, I thank David Spiegel,
MD, for his mentoring in the past as a postdoctoral fellow in the

xiii
xiv Acknowledgments

Department of Psychiatry and Behavioral Sciences at Stanford Medical

School, and now, which includes his commitment to this edited volume.
I thank Howard Spiro, MD, for his sincerity and words of kindness. I
also thank my mum, and my friends, including SKYY, Dorota A. Doherty,
PhD (Perth, Australia), Gloria Valentine of the Hoover Institution (Stanford,
CA), CKO Williams, MD (BC Cancer Center), C. Wilson, and Richard M.
Hirshberg, MD (Houston, Texas) for their friendship and care all these years.
As coeditor of this book, I (D.S.) thank Rhonda Moore for her initia-
tive, enthusiasm, and boundless energy in bringing this project to fruition.
I also thank many colleagues around the world for finding a common
ground of shared purpose in helping cancer patients and their families.
I am indebted to many such patients and their families for their willingness
to share their lives and deaths in the hopes of helping others navigate the
same course more smoothly. The many dedicated faculty and staff associ-
ated with our Center on Stress and Health have worked long and hard to
devise and evaluate better interventions for cancer patients and their fami-
lies, and to understand mind/body interactions that link stress and support
to health. Work on this book was made possible by generous research sup-
port from the National Institute of Mental Health (MH17280), (MH47226),
(MH52134), (MH54930), (MH60556), (MH66366), with special support from
the AIDS branch, the NCI (CA61309), the National Institute on Aging
(AG18784), The California Breast Cancer Research Program (93-18851),
(1 FB-0383), (1FB-0490), (6AB-1100), (7BB-2400), the Mind/Body Network
of the John D. and Catherine T. MacArthur Foundation, the Charles A. Dana
Foundation, the Nathan S. Cummings Foundation, the Fetzer Institute, and
numerous private donors to the Stanford Center on Stress and Health.

RHONDA J. MOORE
DAVID SPIEGEL
Contents

Chapter 1
Introduction 1
Rhonda J. Moore and David J. Spiegel

PART I: CANCER ACROSS CULTURES

Chapter 2
Culture and Oncology: Impact of Context Effects 15
Rhonda J. Moore and Phyllis Butow

The Importance of Culture in Oncological Care 17

Environmental Effects: Influence of SES and Social Suffering
on Health 18
Impact of Culture on Patient and Clinician Roles 21
Impact of Culture on Behavior and Mutual Understanding 22
Cancer: A Particular Threat 23
The Impact of Migration on Cancer Outcomes and Access 24
Communication with Cancer Patients 24
Communication Crisis in Oncology 26
Beliefs about Cancer Causation and the Importance of
Language and Words, Truth Telling, and Disclosure on
the Interaction between the Clinician and the Patient 27
The Meaning of Cancer and Causation 28
Culture, Causation, and Cancer Prevention: Western and
Non-Western Contexts 30
Truth Telling, Disclosure, and Hope 32
Impact on the Family 34
Methodologies 35
Guidelines for Culturally Competent Care 37

xv
xvi Contents

Cross-Cultural Resources 38
Websites 38
Suggested Readings 40
Recommended Books 43
References 45

Chapter 3
Quality of Life in Culturally Diverse Cancer Patients 55
Carolyn Cook Gotay

Introduction 55
Studies of Specified Cultural Groups 57
How Is QOL Defined in Different Cultures? 57
How Does Cancer Affect QOL in Individuals in a Particular Culture? 58
Advantages and Disadvantages of Single Culture Studies 59
Comparisons with Normative Data 60
Advantages and Disadvantages of Normative Comparisons 61
Comparative Studies 62
Advantages and Disadvantages of Comparative Studies 66
Measurement of QOL 67
Discussion 68
The Need to Include Members of the Target Cultural
Groups in Study Design and Implementation 69
The Need to Recognize that Cultural Considerations are
Important for all Patients 69
The Need for Theory in Studies of Cultural and Ethnic
Differences in QOL 70
Conclusion 71
References 72

Chapter 4
Cancer and Aging: A Biological, Clinical, and Cultural Analysis 77
Lodovico Balducci, Darlene Johnson, and Claudia Beghe

Introduction 77
Definition of Aging: Biological, Physiological, Functional,
Medical, and Social Parameters 78
The Assessment of Aging 79
The Comprehensive Geriatric Assessment (CGA) 79
Function 80
Co-morbidity 81
Geriatric Syndromes 81
Contents xvii

Social Resources 82
Nutrition 82
Polypharmacy 83
Limits and Evolution of the CGA 85
Other Forms of Aging Assessment 90
Geriatric Assessment in a Culturally Diverse Society 90
Unique Age-Related Questions in the Prevention and
Treatment of Cancer 92
Aging in the Country and in the World 96
Agism 96
Accounting for Cultural, Ethnic and Geographical
Differences in the Management of Older Individuals 98
Conclusions 100
References 101

Chapter 5
Children with Cancer: Cultural Differences in Communication
between the United States and the United Kingdom 109
Edward J. Estlin and Javier R. Kane
Introduction to Childhood Cancer 109
Treatment of Childhood Cancer 111
Organization of Health Care for Children with Cancer 114
Funding 114
National Organization of Children’s Cancer Services 115
Interdisciplinary Care and Fragmentation of Care 116
Communication and Stages of Care 118
General Issues in Communication 118
Diagnosis and Treatment: Issues of Consent, Assent,
and Dissent 119
End-of-Life Care: Issues of Communication 121
Conclusions 122
References 123

Chapter 6
Cancer Risk Assessment: Clinically Relevant Information is Key 127
Patricia T. Kelly

Introduction 127
Risk Over Time 128
Absolute Risk 129
Relative Risks, Odds Ratios, and Hazard Ratios 129
Percent Increase or Decrease 131
xviii Contents

Risk Specification 132

Conclusion 133
References 133

PART II: CANCER INTERVENTIONS ACROSS CULTURES

Chapter 7
Cancer Prevention: Lifestyle as the Definitive
Means of Cancer Control 137
John H. Weisburger
Introduction 137
Etiology 138
Genetic 138
Lifestyle Traditions 139
Environmental Risk Factors 142
Types of Carcinogens 142
Specific Chronic Diseases 143
Coronary Heart Disease 143
Hypertension and Stroke, Gastric Cancer 146
Cancers 146
Head and Neck Cancers 146
Cancers of the Lung, Kidney, and Urinary Bladder 147
The Western Nutritionally Linked Cancers, Cancers of the
Postmenopausal Breast, Distal Colon, Pancreas, and Prostate 147
Role of Type and Amounts of Dietary Fat 148
Protective Role of Insoluble Bran Cereal Fiber 148
Types of Fiber-Soluble versus Insoluble-Different Metabolic
Effects 148
Important Function of Vegetables, Fruits, Soy Products, and Tea 149
Healthy Aging 151
Conclusion 153
Acknowledgments 153
References 154

Chapter 8
Cross-Cultural Aspects of Cancer Care 157
Samuel Mun Yin Ho, Pierre Saltel, Jean-Luc Machavoine,
Nathalie Rapoport-Hubschman, and David Spiegel
Essentials of Supportive-Expressive Psychotherapeutic
Intervention Developed in the United States 158
1. Social Support 159
2. Emotional Expression 159
Contents xix

3. Detoxifying Dying 160

4. Reordering Life Priorities 161
5. Family Support 161
6. Communication with Physicians 162
7. Symptom Control 162
Outcome 162
Psychosocial Support in Hong Kong 163
The Supportive Expressive Group 165
Outcome 170
Summary 171
Psychosocial Support in France 172
Cultural Differences between France and the United States 172
Psychosocial Intervention in France 173
Experience with Supportive Expressive Group Therapy in France 175
Building Bonds 175
Emotional Expression 176
Detoxifying Dying 177
Summary 178
Conclusions 178
Acknowledgment 180
References 180

PART III: SYMPTOMS AND THEIR MANAGEMENT ACROSS CULTURES

Chapter 9
The Cultural Experience of Cancer Pain 187
Judith A. Paice and Joseph F. O’Donnell

Introduction 187
Organization of Health Care Systems in the United States
and United Kingdom 188
Prevalence of Cancer Pain 190
Cancer Pain in Minorities 192
Barriers to Cancer Pain Management 193
Cancer Pain Syndromes 195
Suffering 196
Common Syndromes in Cancer Pain 197
Measurement, Assessment, and Communication
Regarding Cancer Pain 198
Unidimensional Tools 199
Multidimensional Instruments 200
xx Contents

Physical Assessment 200

Communication 201
Treatment of Cancer Pain 205
Nonopioids 205
Opioids 206
Opioid Selection 207
Opioid-Related Adverse Effects 207
Adjuvants 210
Corticosteroids 210
Tricyclic Antidepressants 210
Anticonvulsants 211
Local Anesthetics 211
Others 211
Pharmacogenetics 212
Cancer Therapies and Other Treatment Options 213
Nonpharmacologic Therapies 213
Conclusion 213
References 214

Chapter 10
Complementary and Alternative Medicine in Patients with Cancer 221
Edzard Ernst and Clare Stevinson

Definition 221
The Prevalence of CAM in Cancer Patients 221
Reasons for Popularity 222
Effectiveness of CAM Therapies as Cancer Cures 225
Di Bella Therapy 225
Diet 225
Herbal Medicine 225
Other Supplements 227
Support Group Therapy 228
Complex Therapies 228
Effectiveness of Palliative/Supportive CAM Therapies 229
Acupuncture 229
Hypnotherapy 229
Relaxation 229
Supplements 229
Spiritual Healing 230
Other Therapies 230
Contents xxi

Safety Issues 230

Where Do We go From Here? 232
References 233

PART IV: DYING AND DEATH IN DIFFERENT CULTURES

Chapter 11
Bereavement across Cultures 241
Richard T. Penson

Introduction 241
Definitions 242
Bereavement 242
Classic Commentaries 244
Optimal End-of-Life Care: Anticipating Bereavement 244
Good Death: Toward a Definition 245
Complicated Grief 245
Gender and Age 246
Predictors of Poor Outcome 246
Burnout 247
Research 247
Coping and Counseling 248
Self-Help and Good Advice 248
Counseling 249
Emergency Response 251
Organized Bereavement Care 251
Psychiatric Referral 252
Grieving Children 252
Condolences 253
Suggestions for Clinical Practice 254
Cancer, Bereavement, Culture: Some Perspectives 255
Culture, Concepts, and Care 256
Cultural competence 257
We Die as We Live 259
Collective Bereavement 260
Religious Aspects of Culture and Bereavement 262
Spiritual and Existential Aspects of Bereavement 263
Christianity 263
Islam 264
Hinduism 265
Buddhism 266
xxii Contents

Judaism 268
Sikhism 269
Internet 270
Internet: Resources 270
Conclusion 272
References 272

Chapter 12
The Unmet Need: Addressing Spirituality and Meaning
through Culturally Sensitive Communication and Intervention 281
Christopher A. Gibson, Hayley Pessin, Colleen S. McLain,
Ami D. Shah, and William Breitbart

Introduction 281
Spirituality and Meaning 282
Cross-Cultural Differences in Spirituality, Meaning, and
Coping with Life-Threatening Illness 283
African Americans 284
Hispanics 285
Asian Pacific Islanders 286
Chinese 286
Filipino 287
Japanese 288
Koreans 288
Sub-Saharan Africans 288
Why Might Such Differences Exist? 289
Guidelines for Effective Communication about Spirituality 289
Taking a Spiritual History 290
Difficulties Assessing Spirituality 291
Barriers to Communication 292
Interventions for Spiritual Suffering 292
Nontraditional Interventions 293
Spiritual/Religious Focused Interventions 294
Meaning-Based Interventions 294
References 296

Index 299
CHAPTER 1
Introduction

Rhonda J. Moore and David Spiegel

The importance of the cultural context to health outcomes has only recently
become a central concern and a part of the biomedical literature.1-3 A
medical encounter is an interpersonal interaction occurring in and influ-
enced by one or more cultural contexts. Ideally, this communication is the
seed from which the relationship between the clinician and patient devel-
ops. It begins when the patient comes to the clinician with a problem, the
patient is diagnosed, the appropriate therapy is administered, the patient is
treated, and the clinician has rendered a valuable service. The underlying
cultural assumption is that the development of a common language facili-
tates an easy flow of medical care, serving to fortify the relationship
between the clinician and the patient. In the West, the strong cultural
assumption is that this biomedical dialogue of exchange is based on the
presumption of the autonomy of the individual patient, presupposes that
patient and clinician come from similar cultural worlds and, therefore, inter-
pret life experiences through the matching cultural and cognitive frame-
works. In an ideal world, the model works. However, the efficacy of this
dialogue and, therefore, the effectiveness of the medical encounter, includ-
ing the ability to communicate in increasingly diverse cultural and bio-
medical contexts, can be especially problematic in the field of oncology.1-3
Difficulties in clinician-patient communication have been increasingly
observed in both Western and non-Western cultural contexts.3-9 This is prob-
ably so because, despite clinical advances, cancer remains a life-threatening

1
2 Rhonda J. Moore and David Spiegel

disease that is heavily invested with meaning. Cancer and its related
symptoms have meant death, pain, shame, social isolation, and loss of
meaning in life across the cultural divide.3,5,10,11 It also challenges the pre-
vailing Western biomedical assumption that all diseases are potentially cur-
able, and that any patient’s death is a failure rather than an inevitable part
of human life. The crisis caused by the delivery of a diagnosis of cancer by
the clinician, the arduous treatments, and, in advanced-stage disease, the
repeated confrontations with recurrence, physical limitations, and treatment
side effects contributes to this breakdown in language. Age, socioeconomic
status (SES), nationality, ethnicity, and sex differences also mediate the cul-
tural context of care, which can also adversely impact oncology care out-
comes, particularly in minority, elderly, female, and other underserved
individuals.12-17 These populations all continue to suffer disproportionately
from decreased survival rates from cancer, and substandard treatments for
related symptoms such as pain and suffering in the global context of
Western oncology care.18-29 This suffering, as Cassell30 has observed, is
related to the severity of the affliction. An affliction, measured in the
patient’s terms, expressed in the distress they are experiencing, their
assessment of the seriousness or threat of their problem, and how impaired
they feel themselves to be.30,31 The life narratives of patients with advanced
cancers perhaps best highlight this experience. Here, the limits of modern
medical technologies to both extend and enhance the quality of the
patient’s life can also contribute to a breakdown in language, as clinicians
attempt to find the words to rationally communicate some of the dire con-
sequences of cancer to the patient and their own limitations.
Throughout the history of medicine, clinicians have long understood
that placebo effects are relevant to both the therapeutic context and to
clinician-patient communication.32-37 Yet, our ability to directly harness
such effects for maximum therapeutic benefit has not been resolved, even
though such effects have been shown to improve subjective and objective
measures of disease in up to at least 40% of patients with a wide range of
clinical conditions and cultural contexts.34,38-42
Clinician-patient communication does not operate outside the context
of culture. Yet, the actual significance of cultural differences—its influence
on the beliefs, expectations, and experiences of clinicians, significant oth-
ers, and patients with cancer—in the therapeutic encounter has only
recently begun to be evaluated.3-6,38,43-46 The goal of this multidisciplinary
edited volume is to draw on the expertise of clinicians, anthropologists,
geneticists, psychologists, and supportive care professionals to create a
cross-disciplinary dialogue. This text offers a description of the relevance
of culture as a context effect that influences clinician-patient communica-
tion in the Western context of oncology care. We maintain that the impact