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Medical Futility
A Cross-National Study
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Medical Futility
A Cross-National Study
edited by
Alireza Bagheri, MD, PhD

Tehran University of Medical Sciences, Iran
foreword by
Daniel Callahan, PhD

The Hastings Center, USA
Imperial College Press

ICP
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Imperial College Press
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Library of Congress Cataloging-in-Publication Data

Bagheri, Alireza.
Medical futility : a cross-national study / by Alireza Bagheri.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-84816-990-6 (hardcover : alk. paper)
I. Title.
[DNLM: 1. Life Support Care--ethics. 2. Medical Futility. 3. Cross-Cultural Comparison.
4. Health Policy. 5. Terminal Care--ethics. 6. Terminal Care--legislation & jurisprudence. WB 60]
174.2'96029--dc23
2012046672
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A catalogue record for this book is available from the British Library.
Copyright © 2013 by Imperial College Press

All rights reserved. This book, or parts thereof, may not be reproduced in any form or by any means,
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Printed in Singapore
For Maryam, Sareh and Ava
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CONTENTS
About the Editor ix

Contributors xi
Acknowledgments xv
Foreword xvii
by Daniel Callahan
Introduction 1
by Alireza Bagheri
Chapter One So-Called Futile Care: The Experience

of the United States 9
Robert M Veatch
Chapter Two The Reality of Medical Futility

(Dysthanasia) in Brazil 35
Leo Pessini and William Saad Hossne
Chapter Three Medical Futility and End-of-Life

Issues in Belgium 59
Jan L Bernheim, Thierry Vansweevelt
and Lieven Annemans
Chapter Four The Concept of Medical Futility in Venezuela 85

Gabriel d’Empaire
vii
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viii Contents
Chapter Five Medical Futility in the Russian Federation 99

Olga I Kubar, Galina L Mikirtichian
and Marina I Petrova
Chapter Six Medical Futility in Australia 119

Dominique Martin
Chapter Seven Medical Futility in Japan 145

Yasuhiro Kadooka and Atsushi Asai
Chapter Eight Medical Futility in China:

Ethical Issues and Policy 163
Yongxing Shi, Mingjie Zhao, Yang Yang,
Cunfang Mao, Hui Zhu and Qingli Hu
Chapter Nine Medical Futility in Korea 181

Ivo Kwon
Chapter Ten Medical Futility from the Swiss Perspective 205

Tanja Krones and Settimio Monteverde
Chapter Eleven Medical Futility in Turkey 227

Berna Arda and Ahmet Acıduman
Chapter Twelve Medical Futility in the United Arab Emirates 247

Said Abuhasna and
Ali Abdulkareem Al Obaidli
Chapter Thirteen Medical Futility in Iran 263

Alireza Bagheri
Index 283
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ABOUT THE EDITOR
Alireza Bagheri-chimeh, MD, PhD, is assistant professor of medicine

and medical ethics, School of Medicine, Tehran University of Medical
Sciences, Iran. Since 2005, Dr. Bagheri has been conducting empirical
studies on medical futility in several countries such as Japan, Korea,
Canada, the United States and Iran. He is a Physician from Iran (1993)
with a PhD degree in medical ethics from Japan (2004). His work on end-
of-life issues, concentrating on brain death and organ transplantation,
began in 1998. His research into medical futility started when he was a
fellow at the School of Law, Kyoto University in 2005, and then in 2007,
under the tutelage of Professor Edmund Pellegrino, a fellow of Georgetown
University, USA. Dr. Bagheri broadened his scope on end-of-life clinical
ethics consultation during his clinical ethics fellowship at the Joint Center
for Bioethics, University of Toronto, Canada.
In 2010, Dr. Bagheri received the National Razi (Rhazes) Medical
Research Award for his work on medical futility. His experience in work-
ing as a palliative care doctor in Iran and then gaining experience in this
area in Canada helped him to understand the complexity of the issue not
only as a clinical ethicist but also as a physician with experience in han-
dling difficulties relating to futility decision making. Dr. Bagheri is cur-
rently the Vice-Chairman of the UNESCO International Bioethics
Committee (IBC) and a member of the board of directors of the
International Association of Bioethics (IAB).
ix
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CONTRIBUTORS
Said Abuhasna is Clinical Professor in Medical Health Sciences at the

United Arab Emirates University, and Chief of ICU, Chairman of the
Department of Critical Care Medicine and Chairman of the Ethics
Committee at Tawam Hospital. He is a member of the Editorial Board of
World Journal of Trauma and Critical Care Medicine and the journal
Anaesthesia, Pain and Intensive Care (APIC).
Ahmet Acıduman is Associate Professor of Medicine and History of
Medicine and Ethics, Faculty of Medicine, Ankara University, Turkey. He
is a member of the Turkish Neurosurgical Society, Turkish Bioethics
Association, Society of Medical Ethics and Medical Law and International
Association for Education in Ethics.
Ali Abdulkareem Al Obaidli is an internist and nephrologist trained at
the University of Toronto and completed his MPH at the Johns Hopkins
Bloomberg School of Public Health. He is currently working as a neph-
rologist at Sheikh Khalifa Medical City and is Chief Clinical Officer for
Abu Dhabi Health Services (SEHA), United Arab Emirates.
Atsushi Asai is Professor of Medicine and Bioethics at the Department of
Bioethics, Kumamoto University Graduate School of Medicine,
Kumamoto, Japan. He was visiting research fellow, Centre for Human
Bioethics, Monash University in Australia and also ethics fellow in the
University of California, in San Francisco, USA.
Lieven Annemans is Professor of Health Economics at the medical facul-
ties of Ghent University and Brussels University. He is former President
of the International Society for Pharmacoeconomics and Outcomes
Research, and a current member of the Flemish Strategic Council for
Health and Wellbeing.
xi
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xii Contributors
Berna Arda is Professor of Medical Ethics and History of Medicine, School

of Medicine, Ankara University, Turkey. She was a founding chairperson of the
Turkish Bioethics Society (1994–2001), and is a member of the High
Disciplinary Committee of the Turkish Medical Association. She is Governor
and Vice-president of the World Association for Medical Law, and Chair of the
Board of Directors of the International Association for Education in Ethics.
Alireza Bagheri is Assistant Professor of Medicine and Medical Ethics,
School of Medicine, Tehran University of Medical Sciences, Iran. He is
Vice-chairman of the UNESCO International Bioethics Committee (IBC)
and a member of the board of directors of the International Association of
Bioethics (IAB).
Jan L Bernheim is a medical oncologist and Emeritus Professor of
Medicine at the Vrije Universiteit Brussel (VUB). In 1979 he co-founded
the first palliative care unit in Belgium and the Quality of Life Study
Group of the European Organization for Research and Treatment of
Cancer. He is a senior member of the End-of-Life Care Research Group
of the VUB and University of Ghent and of the Coma Science Group of
the University of Liège.
Daniel Callahan is President Emeritus of The Hastings Center and was its
co-founder in 1969. He is the author most recently of In Search of the
Good: A Life in Bioethics and The Roots of Bioethics: Health, Progress,
Technology, Death. He received his PhD in philosophy from Harvard.
Gabriel d’Empaire is Professor of Bioethics in Central University of
Venezuela and Director of Coronary and Intensive Care Unit, Clínicas
Caracas Hospital. Dr. d’Empaire is the President of the Bioethics Clinical
Association of Venezuela and a guest member of the National Academy of
Medicine of Venezuela. He was a member of the UNESCO International
Bioethics Committee (2004–2011).
Qingli Hu is Professor of Medicine and a member of the Bioethics Expert
Committee, Ministry of Health, China. He is Emeritus Professor at
Shanghai Jiaotong University School of Medicine. He is a member of the
UNESCO International Bioethics Committee.
Yasuhiro Kadooka is a medical doctor and research fellow in the
Department of Bioethics, Kumamoto University Graduate School of
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Contributors xiii
Medicine, Kumamoto, Japan. During his PhD course on bioethics he has

explored the issue of medical futility in Japan.
Tanja Krones is Physician of the University of Zurich, Institute of
Biomedical Ethics, University Hospital of Zurich, Clinical Ethics, Switzerland.
Olga I Kubar is Professor of Medicine and Head of the Clinical Department
at the Institut Pasteur in Saint Petersburg, Russia. She is a member of the
UNESCO International Bioethics Committee (IBC).
Ivo Kwon is Director of the Ewha Center for Medical Ethics and
Humanities, School of Medicine, Ewha Womans University, and Professor
in the Department of Medical Education, School of Medicine, Ewha
Womans University, Korea.
Cunfang Mao is President of the Shanghai Health Professionals
Association, China; and Vice President of the Shanghai Medical and
Pharmaceutical Journal, China.
Dominique Martin is a Bioethicist at the Centre for Health and Society
in the University of Melbourne, where she currently lectures in Health
Ethics. She has previously worked as a medical practitioner in Emergency
Medicine. Her research interests include issues concerning the procure-
ment and use of human biological materials and issues in professional
ethics for healthcare practitioners.
Galina L Mikirtichian is Professor of Medicine and Head of the Medical
Humanities and Bioethics Department, St. Petersburg State Pediatric
Medical Academy, Russia.
Settimio Monteverde is a PhD candidate at the Institute of Biomedical
Ethics at the University of Zurich (Careum Fellow) and Lecturer for
Nursing Ethics in the Division of Health, Bern University of Applied
Sciences, Switzerland.
Marina I Petrova is Medical Director of the St. Olga Hospice at the St.
Petersburg City Hospital, Russia.
Leo Pessini is Professor of Bioethics at Saint Camillus University Center,
Sao Paulo, Brazil. He is Editor of Ibero-American Bioethics, History and
Perspectives (2010) and Co-editor of the journal Bioethikos. He is cur-
rently President of the Camillian Organization in Brazil.
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xiv Contributors
William Saad Hossne is Emeritus Professor at the State University Sao

Paulo in Botucatu and ex-President of the National Commission for Ethics
of Research Involving Human Subjects in Brazil. He is Coordinator of the
Post-graduate Program in Bioethics at Saint Camillus University Center
and Co-editor of the journal Bioethikos.
Yongxing Shi is Executive Deputy Director of Life Care Research Center,
China Association for Life Care. He is also Director of the Care for
Elderly Society Shanghai Health Professionals Association and Dean of
the Hospice of Zhabei District, Shanghai, China.
Thierry Vansweevelt is Professor of Tort Law and Medical Law at the
University of Antwerp, Belgium. He is Editor of the bilingual Belgian Journal
of Health Law. He is also a lawyer at the law firm Dewallens & Partners.
Robert M Veatch is Professor of Medical Ethics and former Director of
the Kennedy Institute of Ethics, Georgetown University. He was an expert
witness for the mother in the case of Baby K and has criticized physicians
who make normative futility decisions while accepting their role in decid-
ing physiological futility.
Yang Yang is Lecturer, Dalian Medical University, China; Editor, Journal
of Medicine and Philosophy, China; and Secretary, Youth Committee of
Philosophy of Medicine Association.
Mingjie Zhao is President of the Press of Dalian Medical University,
Routine Editor-in-Chief of the Journal of Medicine and Philosophy,
China, and Professor, Doctoral Advisor on Medical Humanities, Dalian
Medical University.
Hui Zhu is Assistant Director of Life Care Research Center, Shanghai,
China.
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ACKNOWLEDGMENTS
I would like to thank my colleagues for their scholarly contributions to

this book. They have successfully provided an international scope on
medical futility. My thanks also to the anonymous reviewers whose com-
ments helped to improve the quality of the discussion in each chapter.
In this regard, I would like to thank Alastair Campbell and Alexander
Capron, for their valuable reviews and comments. My special thanks to
Dan Callahan, one of the pioneers of this topic, for his invaluable fore-
word to this book.
The idea for this book came about when I was the Edmund Pellegrino
Fellow at the Center for Clinical Bioethics in Georgetown University,
Washington DC. I am forever indebted to Dr. Pellegrino who provided me
with continuous encouragement and guidance.
xv
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FOREWORD
IS THE FUTILITY DEBATE FUTILE?

When I published an article in 1991 on the problem of futility, the concept
had by then (at least in the United States) been taken up by many as a way
out of difficult ethical dilemmas of end-of-life care. The idea that physi-
cian efforts to extend life could be ended when there was no further ben-
efit to patients had a long history prior to that time. But “benefit” was a
term that could be interpreted in different ways and was often a source of
disagreement. The seemingly apparent advantage of the word “futile” was
that it had about it a kind of scientific flavor, something that could be dealt
with as a standard medical problem, not requiring ethical analysis. The
dictionary defines “futile” as “useless” or “ineffectual,” and the word
could easily be used, so it was thought, to make yes or no, black or white
decisions. Many people die every day and there is just nothing that medi-
cine can do about that in many cases. Futility as a standard would make
end-of-life care decisions easier, and who could not welcome that possi-
bility? But it wasn’t that simple, as the ensuing discussion and debate
unfolded. Did futile mean zero probability of benefit, as many felt, or a
very low probability of benefit, but not zero probability? At the extreme it
could be pointed out that there are no beneficial treatments for decapita-
tion, that it meets the zero probability standard. But what about situations
where the probability of benefit is 0.005%, exceedingly low, and, we
could well say, quite improbable — but not impossible. And thus, by the
standard dictionary definition, not useless. What then should we do with
probabilities?
Those further debates began to make clear that a decision about futility
is not one that can be reduced to some simple scientific, medical judg-
ment. Technological developments have made it increasingly difficult to
xvii
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b1545 Medical Futility: A Cross-National Study 28 May 2013 10:57 AM
xviii Foreword
say that there is, except for comparatively rare situations, some decisively
sharp line between futile and non-futile. It is more accurate to say that the
care of the dying almost always requires a grappling with probabilities,
that is, with a range of possibilities that are a function of available tech-
nologies that can extend life, even if only for minutes or hours; different
patient physical resiliency characteristics; and (sometimes) the medical
skills of doctors in dealing with critical illness. Every physician can tell a
story about some patient whose treatment at some point seemed futile
by ordinary medical practice standards, but it was continued against all
odds — and the patient survived.
I have come, that is, to think that the concept of futility cannot work the
kind of diagnostic magic many thought it could two decades ago. Yet
despite the difficulties it raises I believe it has been a concept worthy of
analysis and use. The question of what counts as a benefit of treatment is
both old and ever new, and futility is one way to think about it in end-of-
life care. The essays collected in this valuable volume, Medical Futility: A
Cross-National Study, show that there is no common universal standard for
the concept of futility or its proper use. But the debate about its meaning,
and its various uses in different cultures and countries, has been valuable.
End-of-life care has, I believe, become harder not easier in recent years
because of medicine’s power to keep sick and dying patients alive for
longer times, often too much longer. Some treatments are indeed useless.
It is just that it is harder to say just when that happens and just which
they are. These essays give us some useful, interesting, and insightful ways
to cope with that problem, which I suspect will not end in the near, or
maybe even in the far, future.
Daniel Callahan
President Emeritus of
The Hastings Center, USA
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INTRODUCTION
The concept of medical futility has been a part of medicine since its incep-
tion, as medical science has always been limited in its ability to cure
diseases. Therefore, medical futility is in fact an acknowledgement that
there is a point in a patient’s treatment when medicine is powerless.
A point at which patients are overcome by their diseases; the point which
tells us “enough is enough.”
For healthcare professionals, it can be a difficult ethical dilemma to
determine when to withdraw or withhold treatments deemed futile. Conflicts
may arise when physicians and patients have differing ideas about the goals
of treatment. There can also be tension when care providers receive requests
for futile therapies from patients or their families. In a multicultural setting,
cultural differences may lead to misunderstandings about the goals of
treatment, which can make decision making particularly complex. It can be
difficult to negotiate transitions from aggressive treatment to comfort care
with patients and their families.
Medical futility, once called “a problem without a name” (Callahan 1991),
is a controversial issue in its definition and in its applications. The contro-
versy exists, partly, in disagreements between families and physicians
about goals of treatment and the ends of medicine.
The ends of medicine, if defined clearly, would determine when medical
intervention is meaningful and when further treatment is beyond the powers
of medicine. This would guide healthcare professionals on how vigorously
to treat and about when it is morally permissible to withhold or withdraw life-
sustaining treatment. However, the controversy about the ends of medicine
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2 Introduction
gives different answers to this question, and therefore the controversy about
medical futility, in its definition and application, refers partly to the
controversy over the end of medicine. The inevitability of human death,
limitations of medical science, scarcity of health resources, and various
socio-cultural issues mean that decisions regarding end-of-life care in
general, and medical futility in particular, are an inescapable reality in
clinical settings throughout the world. As Dr. Pellegrino reminds, “there is
a time when medical interventions are no longer serving the good of the
patient, when the good is no longer attainable, the intervention in question
is futile; i.e., it cannot attain the desired goal. This is when physician,
patient, and/or family must confront the universal fact of human finitude”
(Pellegrino 2005).
It should be noted that the relevance of medical futility might differ
from country to country. In industrial countries, medical futility is an
important issue because of their relatively aged populations. However, in
developing countries, it is an important issue because of the scarcity of
health resources. It also should be stressed that medical futility is not lim-
ited to the end-of-life context. Physicians frequently conduct examina-
tions, or prescribe treatments or drugs to reassure the patient or to satisfy
a patient’s request, without any medical indication (Baily 2011). Although
discussions about medical futility began almost three decades ago in the
United States, there are few books dedicated to this important issue, and
existing books have mostly focused on the American context. Literature
about medical futility from other countries is scarce. More information is
required to determine the impact of the problem in different healthcare
systems, and to learn more about how this problem is addressed around
the world. This book elucidates the concept of medical futility and dem-
onstrates the application of futility to practical patient care decisions in
different healthcare systems.
Authors from 13 different developed and developing countries have
contributed to this volume, examining how fee-for-service, capitation
payment models, and insurance plans affect approaches to medical futil-
ity. It also explains how socio-cultural and moral views are superimposed
on financial considerations. Several contributions show how developing
regulations or guidelines may help physicians make decisions about
futile treatments, potentially decreasing disagreements between

Introduction 3
healthcare providers and patients’ family members. Such guidelines can

help healthcare professionals decide how aggressively to treat patients.
They may also help physicians make decisions about when it is morally
permissible to withhold or withdraw futile treatments.
Existing controversy about the proper goals of medicine has been cited
as an obstacle to regulating medical futility. However, medical futility
cannot be defined independently from medical facts, normative values,
and socio-economic considerations. Any attempt to develop an opera-
tional definition or guidelines must include the opinions of patients and
families. Such policies should be based on neither excessive patient
autonomy nor physician paternalism (Bagheri 2008). This approach may
lead to ethically and morally viable solutions. A sound policy should
emphasize the establishment of a constructive and informative dialogue to
help each party to come to understand the other’s concerns. This approach
encourages all parties to understand and accept the limits of medicine and
the inescapable clinical reality in which they should no longer rely on
their personal views alone. Physicians should listen to their patient’s
concerns and the patient/family should realize the limits of medicine and
respect the just claims of others on scarce resources.
Each chapter has been structured to describe medical futility in the
contributors’ countries by providing information about five issues: (1) the
country’s healthcare system, including its payment system (e.g. capitation
or fee-for-service/insurance policy) and how the payment system may
affect decision making about medical futility; (2) ethics in end-of-life
issues in their society; (3) legislation and guidelines, professional codes
and protocols that address medical futility; (4) the nature of decision
making regarding futile care; and (5) how medical futility is distinguished
or linked to euthanasia in their country. This structure enables easy com-
parisons between countries.
In a scholarly article from the United States, Robert Veatch reminds us
that the central moral issue of futile treatment is whether, independent of
resource issues, there are moral arguments unique to this class of treat-
ments that justify a physician’s refusal to provide or, alternatively, support
a patient’s right of access to futile treatment.
The article provides deep insight into medical futility, including its defi-
nition and different classifications — physiological and normative — as

4 Introduction
well as the history of the futility debate in the United States. He explains
how two US states (Texas and Virginia) have attempted to address the
issue through legislative and regulatory approaches and allow a physician
to unilaterally withhold or withdraw life-sustaining treatments against the
wishes of the patient or surrogate. Veatch reveals that almost all court
cases regarding futile treatment advocate patients’ and surrogates’ rights to
access futile treatments, provided specified conditions are met.
An analytical article from Brazil shows how legal concern may compel
physicians to have a more aggressive attitude to provide futile treatment at
the end of life, despite their belief that this approach may not be the best
for the patient. The authors describe the challenges of harmonizing judicial
rulings with ethical standards in a country with laws and regulations to
manage end-of-life issues.
Belgium is unique in having both legalized physician-assisted dying and
the most developed palliative care program in Europe. Bernheim and his
colleagues describe how these factors reduce instances of medically futile
treatments at the end of life. The article explains that euthanasia has been
widely integrated into comprehensive palliative care, thus reducing demand
for futile treatments. It shows how statistical data from epidemiological
studies can be used in the development of end-of-life care policies.
The contribution from Venezuela describes how physicians define futile
treatments as those which do not benefit patients, while exploring chal-
lenges related to cultural and linguistic differences. The author explains
that the lack of unified medical protocol causes great variation in the way
that physicians approach medical futility.
In Chapter 5 a review of the issue in the Russian Federation shows how
the term “futile medicine” is absent from the vocabulary of medical pro-
fessionals, and therefore all ethical, social, legal and medical aspects
associated with end-of-life treatment and medical futility are expressed
through the concept of palliative medicine. The article describes decisions
about futile treatment framed within the context of palliative care. In this
approach, physicians should act in the patient’s best interests while setting
therapeutic goals for the patient. That means physicians treat their patients
within reasonable limits of available health resources while acknowledg-
ing the natural processes of human death. The authors argue that there are
no objective criteria to withdraw end-of-life treatment, noting the

Introduction 5
importance of determining the appropriate time to transition to compre-

hensive palliative care if aggressive interventions are futile.
The article from Australia provides not only the author’s perspective on
medical futility, but it also provides a review of the issue in her country.
The article discusses the role of palliative care and describes how decisions
about medical futility are a key issue in the Australian healthcare system.
In Chapter 7, the authors explain that medical futility is an immediate
problem in Japan that must be addressed by the Japanese healthcare sys-
tem. They examine aspects of the Japanese healthcare system that have led
to lengthy hospitalizations, frequent medical examinations, and overtreat-
ment of the elderly. The article describes factors that have caused a rise in
demand on Japan’s healthcare system, including an aging population,
advances in medical technology, and cost-containment measures, includ-
ing the introduction of a flat-fee payment system causing a rise in national
health expenditure. The article explains why Japanese physicians are hesi-
tant to forgo life-prolonging treatments for terminally ill patients. In
clinical settings, most end-of-life decisions have been left to individual
doctors because there is no institutional system to deal with controversial
issues in a team context. It demonstrates how Japanese views on life and
death are influenced by the Shinto religion. Interestingly, a public survey
by the Japanese Ministry of Health confirmed that most of the population
is not in favor of aggressive life-prolonging treatments deemed futile. The
authors explain how in deciding to withdraw life-prolonging treatments
for terminally ill patients, many Japanese physicians confront legal, emo-
tional, and cultural barriers.
In the article from China, Yongxing Shi and colleagues describe how
the great challenge in terminal care is the traditional Chinese view of
death, which holds that the end of life is inauspicious and the greatest
“evil”. In Chinese society, the idea of “cherishing life but dreading death”
has influenced the attitudes of the public and physicians in decision mak-
ing about medical futility.
Authors explain the moral dilemma between the traditional medical
ethics of “retrieving the dying and rescuing the wounded” and requests to
prolong patients’ lives by applying modern medical technology despite
beliefs that such treatment is futile. This also explains how overtreatment
is relatively common in China.

6 Introduction
The contribution from Korea explains how withdrawing futile treat-

ment from dying patients is understood as “death with dignity”, which
means facing death in harmony with the natural order. The article shows
how in end-of-life decision making, the patient’s wishes may sometimes
be overridden by the wishes of family members. It also confirms that
end-of-life decisions are sometimes influenced by the economic burden
faced by families due to the insufficiency of the national health insurance
system.
Chapter 10 provides insight into medical futility in Switzerland by
comparing it with the situations in Germany and the United States. The
authors explain how in the “Swiss approach”, futility decisions are based
on societal and economic elements with a strong reliance on risk-benefit
assessments by individual physicians. The article elaborates how, since
the enactment of the Health Insurance Law, different cases involving the
refusal of insurers or the state to pay for interventions deemed medically
futile have drawn public attention. It explains how in one case, the Federal
Supreme Court ruled that the insurer was not obliged to cover the costs of
the futile treatment because it did not offer a substantial therapeutic ben-
efit, and cost-effectiveness could not be demonstrated.
In Chapter 11, the authors indicate that in Turkey, death-related discussions
are extremely limited, and the subject is discussed very little during medical
school and specialty training. The article explains that in Turkey — as is the
case in many countries — there is a lack of studies examining how physicians
make end-of-life decisions, and whether or not social factors affect these
decisions. According to the Patients’ Rights Act of 1998, physicians have the
right not to offer medically futile interventions if the patient does not “need”
the treatment. This right is also based on considerations of fair resource
allocation.
The articles from Iran and the United Arab Emirates (UAE) show how
religious beliefs and Islamic teachings are important in end-of-life deci-
sion making, especially in cases of futile treatment. An empirical survey
in Iran shows that scarcity of medical resources, the patient’s suffering,
the family’s opinion and religious concerns are four influential factors in
futility decisions. It shows how physicians and health policy makers are
focusing attention on the need to develop guidelines regarding medical
futility.

Introduction 7
In the UAE, a lack of understanding about the prognosis of terminal

illnesses leads patients’ families to request futile treatments. The authors
explain how the idea of limiting futile treatment is gaining acceptance
among families and physicians.
This book is intended to deepen our understanding of medical futility
by examining the approaches and experiences of nations with different
cultures, healthcare systems, and socio-economic statuses. It offers valuable
insights for countries where medical futility is becoming a critical issue.
It calls on us to distinguish between futile treatments, which do not benefit
patients, with concerns about allocating resources in ways that can produce
more good if they are used for other patients. A deeper understanding of
these issues, along with sound guidelines, can help physicians approach
cases of medical futility in a way that is morally sound.
Alireza Bagheri
Toronto, November 3, 2012
REFERENCES
Bagheri A. 2008. Regulating medical futility: Neither physician’s paternalism,
nor excessive patient’s autonomy. European Journal of Health Law 15:
45–53.
Baily MA. 2011. Futility, autonomy, and cost in end-of-life care. Journal of Law,
Medicine And Ethics 39: 172–182.
Callahan D. 1991. Medical futility, medical necessity: The-problem-without-a-
name. Hastings Center Report 21: 30–35.
Pellegrino E. 2005. Futility in medicine decisions: The word and the concept.
HEC FORUM 17: 308–318.


CHAPTER ONE
SO-CALLED FUTILE CARE: THE EXPERIENCE

OF THE UNITED STATES
Robert M Veatch
SUMMARY
By the mid-twentieth century most people in the United States were

committed to preserving life whenever possible, but that soon was ques-
tioned. Even physicians, among the most dedicated to aggressive treat-
ment, began to question such practices. When patients occasionally
insisted on such efforts, physicians began demanding the right to unilat-
erally forgo life support, treatment they called “futile.” The debate that
followed and the cases and legal activities are presented here along with
the critical conceptual distinctions. Physiological futility must be distin-
guished from normative futility and both kinds of cases separated from
resource allocation concerns. The two most important cases — Helga
Wanglie and Baby K — are presented as well as the one case in which
the American courts have sided with the physician. The odd futility law
of the state of Texas, which authorizes limited unilateral physician deci-
sions to forgo life support, will be summarized as well. The limited role
of the physician and more complex role of the family are presented and
medical futility is compared to the broader issue of euthanasia in the
United States.
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10 Chapter One
INTRODUCTION
There was a time, about a half century ago, that Americans (and most
people around the world) believed that human life should always be pre-
served, even when such efforts were burdensome and likely to fail. The
last decades of the twentieth century saw radical change in that commit-
ment. With the development of technologies that could stabilize what had
previously been inevitably acutely fatal illness, Americans began rethink-
ing their personal preferences and moral views. Views changed so rapidly
that within about 20 years most people in the United States began to
question the wisdom of preserving life in the face of terminal or serious
chronic illness. Even physicians, who had been among the most militantly
committed to preserving life, joined the “death with dignity” movement
and conceded the appropriateness of making explicit and conscious deci-
sions to forgo life-sustaining medical treatments. This shift was affirmed
in the 1983 US government Commission report Deciding to Forego Life
Support (President’s Commission for the Study of Ethical Problems in
Medicine and Biomedical and Behavioral Research 1983).
At the same time, the United States is extremely pluralistic. Even though
a substantial consensus of health professionals and lay people began to
affirm decisions to forgo, several minorities dissented, remaining militantly
committed to preserving life even in cases in which efforts were inevitably
going to fail. Orthodox Jews, some members of pro-life groups, and some
minority ethnic groups tended to resist the emerging consensus. This would
eventually lead to clashes between those who held these minority views
and mainstream health professionals, at least mainstream professionals
who had bought into the cultural acceptance of death while retaining the
more traditional view that physicians should remain the authoritative
decision-makers regarding medical decisions. By the last decade of the
twentieth century several of these clashes were between patients or their
surrogates who wanted maximal efforts to preserve life and physicians who
thought it was wise to stop such efforts.
These clashes are often referred to as the futile care debate (Council on
Ethical and Judicial Affairs, American Medical Association 1999; Jecker
and Schneiderman 1993; Lantos et al. 1988; Lantos et al. 1989; Rubin
1998; Schneiderman, Jecker, and Jonsen 1990; Veatch and Spicer 1992;
Youngner 1990; Youngner 1988).
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So-Called Futile Care: The Experience of the United States 11
THE HEALTHCARE SYSTEM IN THE UNITED STATES

The emergence of the futile care debate in the United States is, in part, to
be attributed to its unique health care system. American culture prides
itself on a “non-socialized,” free-enterprise, individualistic health care that
rejects a governmental health service or insurance. Individuals are, in
theory, supposed to be responsible for their own health care and free to
choose any insurance or fee-for-service delivery system. The bulk of the
American population is covered by private health insurance provided by
the employer of the head of each household.
At the same time, a large portion of the American public, in fact, gets
government-funded or government-managed health insurance. Government
accounts for 17 percent of the nation’s workforce (Newman 2012), almost
all of whom receive health insurance through government programs. The
military, for example, receive health care through the Civilian Health and
Medical Program of the Uniformed Services (CHAMPUS) (recently
renamed TRICARE). It covers military personnel, retirees, and dependents.
Virtually all persons over age 65 as well as those with disabilities are
insured by the federal government Medicare system. It covers some 47 mil-
lion people of a population numbering 313 million for either hospital or
hospital plus medical services. In addition, Medicaid, a federally funded
program administered by the states, covers 53 million low-income people.
Some 50 million people are uninsured. A small number with means may
self-pay, but many of these receive some level of charity care from hospi-
tals and health professionals. Those covered by private insurance have their
insurance heavily regulated by government agencies. Thus, the myth of a
private free market in health care services is seriously misleading.
Moreover, each of these forms of medical service delivery may reflect
a variety of payment systems, including fee-for-service, capitation, and
health maintenance organizations, often including the commitment to
provide “medically necessary” services for a fixed yearly fee (often with
some combination of co-payments, deductibles, or expenditure caps).
Medicare compensates hospitals with a fixed fee based on diagnosis and
treatment combinations regardless of the actual costs to the hospital for
any particular patient.
This complex, multi-dimensional health care system generates equally
complex incentives related to so-called futile care. Private, fee-for-service
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12 Chapter One
practitioners and hospitals, in theory, have financial incentives to over-

treat, in part by encouraging or at least going along with patient and
family requests for life-sustaining services that doctors would recognize
as futile. On the other hand, private insurance and health maintenance
organizations (as well as government health care system managers)
have incentives to minimize costs by refusing to fund services deemed
futile.
Superimposed on these financial incentives is a set of cultural, moral
views that affect delivery of medical care some would classify as futile.
Conservative religious and cultural groups identifying with “pro-life”
views may insist that all human life is precious and to be preserved even
if the extension of life is transient and costly. In the past two decades doc-
tors’ groups have begun to insist that delivery of medical services deemed
futile conflicts with the fundamental end of the practice of medicine.
Proponents of this view insist the goal of medicine is to heal and that ser-
vices that merely temporarily prolong the dying process are not part of the
essence of good medicine. These governmental, financial, and cultural
forces have clashed over the norms for delivery of medical services that
are believed merely to prolong temporarily the life of the dying patient.
THE ETHICS OF END-OF-LIFE ISSUES

IN THE UNITED STATES
The ethical debates over futile care emerged in the late 1980s and early
1990s superimposed on an earlier and broader robust debate over end-of-
life issues in the United States. Beginning in about 1970 patients began
demanding a greater say in decisions about end-of-life care. In particular,
they demanded the right to refuse medical treatments that they thought
were merely prolonging the dying process without offering net benefits
for the patient. These demands were often couched in terms of the right of
the patient to refuse consent to medical treatment, a right embedded in the
larger informed consent discussion. Many would see this movement as an
outgrowth of the American and world-wide emergence of rights move-
ments of the 1960s and 1970s (Veatch 2009). This period produced in the
United States a civil rights movement, an anti-war movement, a women’s
rights movement, a student movement. Could a patients’ rights movement
be far behind?
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Reliance on concepts of liberal political philosophy and law quickly led

to replacing the more traditional, paternalistic physician-dominated deci-
sion-making (often committed to preserving life) with a more rights-ori-
ented, patient-centered perspective recognizing the right of the patient to
refuse any medical treatment whatsoever provided that treatment was
offered for the patient’s own good. (Hence, forced medical treatments for
public health purposes were still considered acceptable, in principle.)
Naturally, the treatments refused were often end-of-life interventions
deemed of no net value by the patient.
This patients’ rights perspective quickly prevailed as long as physicians
were insisting on providing life support to patients who were refusing it.
The perspective was more complicated, however, as physicians began to
concur with the judgment that certain end-of-life interventions did more
harm than good. In particular, in cases in which patients with minority
views demanded life-prolonging care while physicians adopted the domi-
nant interpretation that these interventions were pointless, the patients’
rights perspective caused some confusion. Some apparently thought that,
because a patients’ rights perspective gave patients the right to refuse
treatment, they also had a right to gain access even against the wishes of
the physician. These cases began emerging in hospital settings in the late
1980s and soon led to court cases litigating the question of whether
patients had a right of access to such treatments and whether physicians
were required to deliver them.
Physiological vs. Normative Futility

The initial presumption that patients’ rights required not only honoring a
patient’s right to refuse treatment, but also honoring his or her right of
access was quickly challenged. Some physicians claimed, inappropriately,
that deciding whether a treatment was useful or futile was entirely a matter
of medical expertise. It was the doctor’s call. Just as physicians had exper-
tise that led them to have the authority to prescribe medications based on
their knowledge of the pharmacology, toxicity, and treatment effects of
drugs, so they had the authority to decide whether a treatment was useful
or futile for the patient’s condition.
This claim quickly generated much confusion and led to important
conceptual clarifications. Many of us working in medical ethics had been
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14 Chapter One
insisting for decades that physicians could not legitimately claim expertise
in deciding whether a particular treatment effect was a good or bad effect
(Veatch 1973). Starting with a simple version of the classic fact/value
dichotomy, we claimed that physicians could rightly claim expertise on the
effects of a treatment, but could not go on to claim that the effect was good
or bad. These judgments, we argued, were matters of evaluation requiring
judgments that any human being was capable of making. Hence, the ques-
tion of whether adding a week of unconscious life to a patient served a
useful purpose was something any person — lay or professional — was
capable of evaluating and rendering a judgment upon. This evaluative
judgment had to be separated from the more technical, scientific question
of whether an intervention would, in fact, extend life for a week, and, if
so, at what probability.
Physiological Futility
This basic fact/value distinction led to a critical conceptual distinction in
the futile care debate. We distinguished two kinds of futility: physiologi-
cal and normative (Youngner 1988). The distinction rests on the nature of
the disagreement between physician and patient. In some cases, the two
parties are in agreement over the goal of the treatment and disagree over
whether there is evidence that the treatment under consideration will
achieve that goal or the probability it will be achieved. For example,
patient and physician may agree that the goal is to eliminate an infection
in the inner ear that is with a high degree of certainty viral. They are dis-
cussing whether an antibiotic will eliminate the infection. We would say
they agree on the goal, but are disputing the facts of whether an antibiotic
will achieve that goal. The claim of the physician would be that antibiotics
will not have a physiological effect on the viral infection. The dispute is
over the medical facts; not over the goal.
In such cases, there is widespread agreement that the physician legiti-
mately claims expertise on matters of physiological futility. Of course, a
physician may be in error (claiming, for example, that antibiotics elimi-
nate the virus under consideration when there is no such evidence). The
general claim, however, is that the physician is the presumed expert on
such claims of medical fact. He or she is subject to the normal standards
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of peer review and could be accused of malpractice if an error is made

on such factual matters. Generally, the patient is not authoritative in such
disputes.
Moreover, in disputes over physiological futility the working presump-
tion is that no physician has any obligation to deliver a treatment simply
because the patient believes it will effectively produce the result the
patient is seeking even if the expert opinion of the physician is to the con-
trary. Professionals could not function if they were obliged to deliver
every treatment a patient demanded even if the overwhelming evidence
was that it could not produce the effect the patient was seeking.
Normative Futility
By contrast, other disputes over futility are over the value of a goal that
might be pursued. Consider the case of a patient diagnosed as permanently
vegetative in which the patient (through an advanced directive) or a familial
surrogate insists the life is still precious and should be preserved by medi-
cal intervention. A physician who disagrees and calls the intervention
“futile” is not disagreeing over the factual matter of whether some life sup-
port will, in fact, extend life. There may well be agreement that the uncon-
scious life could be extended, at least for a short period. The parties are not
disputing the facts; they disagree about the value of the extension of life.
This second kind of disagreement is typically referred to as a dispute
over normative futility. The parties agree on the facts, but dispute the value
judgment. The physician may claim that extending life is “futile” even
while conceding it is physiologically possible. The physician is claiming
there is no value in the activity while the patient or surrogate has claimed
that it is of value. The critical moral claim is that experts in a domain such
as medicine can claim no legitimate expertise on these normative judg-
ments. Some physicians see value in permanently unconscious life; most
do not — just as some lay people see value in such life while most do not.
The dispute cannot be resolved by medical expertise. Ths issue is whether
patients, in addition to having a right to refuse medical treatments, also
can have a right to access to some treatments even if they are deemed
normatively futile by the physician providers. Presumably, some treat-
ments demanded by patients can be resisted by health professionals even
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16 Chapter One
if they agree on the physiological outcomes. Some treatments are simply

too trivial or too controversial to assume that a patient who has a correct
understanding of the physiological effect of the intervention automatically
has a right of access from an unwilling provider. Providers can refuse to
provide cosmetic surgery, experimental treatments, obesity therapies, and
many other kinds of treatments including morally controversial interven-
tions such as abortions or euthanasia. They may claim it is simply not a
therapy they choose to offer. (In fact, in some cases they are legally forbid-
den from offering it.) Even though providers may clearly refuse to provide
some classes of treatments, are there certain kinds of treatment patients
may justifiably demand? To put the question in other words, are there
some classes of treatments that providers may, in good conscience, not
refuse to provide?
Resource Allocation and the Ends of Medicine

The American discussion has made a further distinction at this point.
When asked why a provider may justifiably refuse to provide a treatment,
one obvious reason put forward is the moral imperative to conserve scarce
resources. When a treatment achieves only those effects that some would
consider to be of no value at all, someone could plausibly ask whether
such treatment is a good use of scarce medical resources. All societies
face the problem of scarcity of resources and should think carefully about
policies to limit their inefficient use.
Why Resource Allocation is Not the Central Issue

Although treatments deemed futile by providers seem to be the epitome of
inefficient resource use, there are three reasons why that has not been the
main focus of the futility debate. First, as we have suggested, even though
a provider may see no value in the effect of some treatment, others
(including the patient) may see those effects as valuable. Any policy
limiting the use of resources for treatments deemed futile by providers
must take into account the subjectivity of judgments about what counts as
a valuable treatment effect. Some effects may be seen as being of value by
others even if they are deemed valueless by a provider. Hence, there is
reason to question the provider’s refusal to provide.
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Second, even if there is a substantial consensus that the treatment effect

is of questionable value, there is reason to hold that someone other than
the patient’s physician should set limits on the use of medical resources
on grounds of responsible use of resources. The physician is, at least his-
torically, committed morally to the welfare of the patient, not the interests
of other parties. He or she may at least see psychological benefits to the
patient who receives a treatment that is very much desired. In fact, the
physician, being historically committed to the patient, may actually over-
commit scarce resources to his or her patient if they provide some level of
benefit, no matter how inefficient.
Third, even if treatments deemed futile by providers are good candidates
to be eliminated in the name of social justice and the fair and efficient use
of scarce resources, this class of treatments is not unique in being consid-
ered for such limits. Other treatments, admittedly not “futile,” may be very
inefficient in the benefits they provide for the resources invested or may be
very unfair use of resources and may be good candidates to be eliminated
in a program designed to address the issues of resource allocation.
Futility and the Ends of Medicine

Although scarcity of resources may often be a justifiable reason to place
a limit on any treatment, often the cases identified as “futile care cases” in
the American discussion have not raised this issue. It turns out that the
cases have not involved scarce resources and that funding for the treat-
ment is available without jeopardizing the welfare of those who have just
claims on social resources. Some futile care cases involve settings in
which all involved acknowledge no scarcity of hospital facilities or health
professional personnel. The funding of the treatment may come from
sources for which the patient has a just claim. For example, the patient
may have bought special insurance to cover the service, in effect, pre-
paying for the treatment deemed futile and not consuming social resources
to which the patient is not entitled. Alternatively, the patient may self-pay
(ideally using personal resources justly acquired). Or a group sympathetic
to the patient’s demands may pool resources to pay for the treatment as an
act of charity. These could be referred to as “equitable funding sources”
in that, in theory, the patient has a legitimate claim on the resource and is
not consuming something to which others are justly entitled.
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18 Chapter One
The central moral issue of care deemed futile is whether, independent

of resource issues, there are moral arguments unique to this class of treat-
ments that justify a physician’s refusal to provide or, alternatively, whether
there are arguments that support a patient’s right of access.
Often in the American cases, physicians have claimed that they have a
new understanding of the ends of medicine to which they are obligated.
These ends are often expressed as the “healing of the patient” and are
presumed not to include interventions that merely stabilize a dying patient
in an unconscious or otherwise seriously compromised state. Physicians
opposing care they deem futile hold they have no professional obligation
to deliver a service that is outside the ends of medicine. If a patient is to
have a right of access to an unwilling physician’s services to provide treat-
ments he or she deems futile and outside the ends of medicine, some
strong moral argument will be needed.
Autonomy and Access to Futile Care

Some critics of the advocates of access to treatments deemed futile by
physicians in the case in which the patient sees an agreed-upon outcome as
valuable have argued or assumed that the defense of access is based on
some theory of patient autonomy (Paris 1993). At least more sophisticated
defenses of patient access to treatments deemed futile by providers do not,
however, rest on the ethical principle of autonomy. Autonomy is a principle
that largely creates negative rights — the right to refuse treatment, for exam-
ple. It does not give someone the right to the services of another party. In
fact, insofar as autonomy is concerned, it is the autonomy of the provider
that is in jeopardy in disputes over futile care. The demand of the patient is
that the physician participate in the patient’s treatment against the provider’s
will. Autonomy, if anything, seems to support the right of providers not to
participate in delivering care against their professional judgment.
Professional Promises and Access to Futile Care

Hence, if a right of access is to be established, it must rest on other moral
grounds. The grounds most often cited in the American discussion has
been the health professional’s duty growing out of the principle of fidelity
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or promise keeping. When physicians take on a patient, they generally

promise to stay with the patient and serve the patient until relieved of that
responsibility either by the patient’s agreement or by their replacement by
another willing physician. If there is another physician competent to pro-
vide the treatment sought by the patient and willing to provide it, both
patient and provider would plausibly agree to the substitution of the new
health professional. In all the interesting American cases, which will be
discussed later, no competent colleague willing to serve could be located.
Some would reply that the health professional’s promise to stay with a
patient is not open-ended; it applies only to those services within the
standard of care. If the treatments deemed futile for the health profes-
sional are not in the standard of care, then they are not within the promise
of loyalty to the patient. That makes sense and applies to cases of patients
demanding physiologically futile treatments as well as treatments that are
marginal to medical well-being (such as cosmetic treatments). It does not
make sense, however, to exclude certain narrow classes of treatments that
have historically been seen as part of the standard duty of the physician.
Drawing on a concept of the law, we can identify a patient’s interest in
a small class of cases in which we would say the patient’s interest is fun-
damental. This suggests the necessity of differentiating a large group of
treatments in which the patient’s interest is considered more marginal or
controversial — cosmetic procedures, experimental procedures, and con-
troversial interventions such as abortion — from a smaller group of treat-
ments in which a patient might be said to have a basic or fundamental
interest. Saving a life with treatments that will effectively prolong life is
such an example. Possibly, relief of severe pain would be another such
fundamental interest. The claim is that the professional’s promise to stay
with the patient must include provision of services that serve a fundamental
interest of the patient when that service has historically been within the
standard of care.
The distinction calls for a mental exercise. Imagine there is a situation
in which a majority of the population would not want an intervention (such
as life prolongation for patients in a vegetative state) while a minority
would have a strong desire for the intervention. Imagine further that one
did not know whether one were in the majority or minority. The claim is
that for a few treatments, even if we were in the majority, we could
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20 Chapter One
empathize with those in the minority to the point that we would support
their right of access. We would adopt a policy that is cognizant of the
minority’s claim and see it as so fundamental that we would not want to
risk the possibility that at some point in the future we would be in the
minority and have to face a social policy that excluded our right of access.
This approach, modeled after the veil of ignorance methodology of twen-
tieth-century American philosopher John Rawls (1971), suggests that
basic social policies should be designed so as to treat worse-off minorities
in a fair manner.
Historically, physicians have regularly provided life-prolonging treat-
ments, at least if patients desired the treatment (and sometimes even if
they did not). The historical pattern in effect amounts to a mutual set of
promises between the society and the profession. The profession will be
given, as a privilege of licensure, a monopoly on the use of life-sustaining
technologies in exchange for which a reasonable society would extract the
promise that, under certain specified conditions, a physician will use those
technologies on patients who want them. Among the conditions that plau-
sibly would be imposed:
1) The treatment is in the context of an ongoing patient-physician relation.

2) The physician is competent to provide the treatment.
3) No other competent colleague is willing to take the case.
4) Some equitable funding source is available to pay for the treatment.
5) The interest at stake is deemed fundamental (life preserving or pain
relieving).
The claim of the defenders of patient access to life-prolonging care

deemed futile is that the cases in the American discussion meet all five of
these conditions.
RELATED LEGISLATION AND POLICY DEALING

WITH MEDICAL FUTILITY
These moral arguments for the patient’s limited right of access to care
deemed futile by providers emerged in the 1990s through case law in the
American courts and limited legislative efforts at the state level.
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Case Law
Several legal cases generally led to the conclusion that, when the five
conditions we have identified were present, the patient had a right of
access. These cases were often settled on various technical legal grounds
but all supported the patient’s right of access.
Helga Wanglie (1989–1991)

The first case gaining widespread public attention was that of Helga
Wanglie (In re The Conservatorship of Helga Wanglie 1991). Mrs. Wanglie
had suffered a hip fracture in December of 1989. While being transferred
from a nursing home to the Hennepin County Medical Center by ambu-
lance on January 1, 1990, she suffered a cardiac arrest. This was followed
by other cardiac arrests, including one on May 23, 1990, which left her in
a state of unconsciousness from which she did not recover. She was left
ventilator-dependent and was fed only by intubation. At this point she had
aortic insufficiency, congestive heart failure, chronic, recurrent pneumo-
nias, and chronic respiratory insufficiency. She was in a persistent vegeta-
tive state from which her physicians concluded she would never recover.
There had been various reports that Mrs. Wanglie and her husband of
53 years, Oliver, were devout Lutherans with “pro-life” views. Mr. Wanglie,
in consultation with their son and daughter, insisted that ventilator support
continue. Consultation with the hospital ethics committee led to the recom-
mendation that Mrs. Wanglie’s ventilator be removed, a recommendation
which Mr. Wanglie refused to accept.
Steven H. Miles, a member of the committee and consultant to the phy-
sicians treating Mrs. Wanglie, sought to have Mr. Wanglie removed as
decision-maker for his wife. The working assumption was that the removal
of Mr. Wanglie and appointment of a new guardian would lead to a deci-
sion to remove the ventilator, which the medical personnel deemed futile.
The court found that Mr. Wanglie was his wife’s closest relative, knew
her conscientious, religious, and moral beliefs, had a well-established
pattern of conferring with family members, and was dedicated to promot-
ing his wife’s welfare. It thus confirmed the appointment of him as her
guardian and denied Steven Miles’s counter-effort. The decision, while
technically only a guardian determination, was widely interpreted as an
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22 Chapter One
affirmation of the right of Mr. Wanglie to insist on continued life support

for his wife. She died on July 4, 1991, six days after the court decision.
Her medical costs of $800,000 were paid primarily by Medicare and a
supplemental insurer. Only a small portion of the costs arose after the
court decision.
Baby K (1992–1994)
On October 13, 1992, a baby was born in Virginia, widely referred to as
“Baby K,” who had been diagnosed prenatally as having anencephaly. The
mother insisted that life support be continued. The physicians, with the
advice of the hospital’s ethics committee, believed that ventilatory support
was not warranted and sought legal authority in the federal court to forgo
it. The court, summarizing the baby’s condition, described her as lacking
a cerebrum and, hence, permanently unconscious (In the Matter of Baby K
1993). She had no cognitive abilities or awareness and could not hear or
otherwise interact with her environment. At birth, physicians placed the
baby on a mechanical ventilator, confirmed the diagnosis, and recom-
mended the baby be supplied with nutrition, hydration, and warmth, but
that no aggressive treatment be provided. Baby K’s mother continued to
insist on mechanical breathing assistance.
Attorneys for the mother argued that American laws required provision
of assistance. They appealed to the Emergency Medical Treatment and
Active Labor Act (EMTALA), which requires hospitals to provide emer-
gency treatment of all patients, as well as the Rehabilitation Act, which
prohibits discrimination against the handicapped, and Americans with
Disabilities Act as well as other federal and state laws. The court ruled
that, based on these laws, the hospital had to provide ventilator treatment
to Baby K. The decision was appealed to the United States Court of
Appeals, which upheld the decision (In the Matter of Baby K 1994). When
an appeal was made to the United States Supreme Court, that court
declined to hear the case, thus upholding the ruling.
It is important to this case that Baby K’s mother did not challenge any
of the medical facts of the case as presented by the attorneys for the hospi-
tal. She acknowledged that the baby had true anencephaly and would never
recover consciousness. Nevertheless, she disagreed with the physicians’
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value judgment that there was no value in preserving the unconscious

life. This was, thus, a dispute over normative, not physiological, futility.
Baby K, from the point of the decision, continued to receive high-quality
medical care and survived for two and a half years before succumbing to
an infection.
Other Cases in Which Treatment was Required

Since the time of Helga Wanglie and Baby K almost all other reported
cases involving futility have led to legal decisions that life support must
be required. They generally involved normative controversies in which
physicians and patients or families agreed on the likely therapeutic out-
come of intervention. Generally, they were cases in which the patient’s
condition would not be cured and the patient would not be restored to
consciousness. The disputes have generally been over whether uncon-
scious life was worth preserving. With a limited number of exceptions
described later, these cases are now usually not formally debated. Patients
are presumed to have the right of access to life-sustaining medical inter-
ventions, regardless of the opinion of physicians that the treatment out-
come is not worth pursuing.
In a case in the state of Georgia, a doctor allowed a premature baby to
die by terminating life support against the wishes of the parents. The Court
of Appeals of Georgia ruled that the doctor “had no right to decide, unilater-
ally, to discontinue medical treatment even if, as the record in this case
reflects, the child was terminally ill and in the process of dying. That deci-
sion must be made with the consent of the parents” (Velez v. Bethune et al.
1995). That court cited an earlier Georgia court opinion with similar impli-
cations (In re Jane Doe, a minor 1991; In re Doe 1992). Similar results were
reported from a lower court case in Pennsylvania (Rideout, Administrator
of Estate of Rideout, et al. v. Hershey Medical Center 1995).
A Single Legal Case with Contrary Implications: Catherine

Gilgunn (1989–1995)
In the face of this rather consistent legal history of courts ruling that
physicians did not have the authority to unilaterally forgo life-sustaining
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24 Chapter One
medical treatment without patient or surrogate approval, one court case

seems to have contrary implications. It is the nature of United States laws
that many cases are decided by state rather than federal courts, and they
may be governed by somewhat different laws. The single case seeming to
be consistent with the right of physicians to forgo unilaterally treatments
they believe to be futile arises in Massachusetts. It presents unusual
details, making it difficult to determine whether the Massachusetts courts
would have supported the physicians’ decisions to forgo care they deemed
futile in any of the other cases described earlier.
In May of 1989 a 72-year-old woman named Catherine Gilgunn broke
her hip. (The legal opinion resulting from this case was unpublished. This
summary is based on Kolata 1995a, 1995b; Paris et al. 1999; Orr 1999;
Zucker 1995; Capron 1995.) She had a previous history of diabetes,
kidney problems, coronary artery disease, breast cancer, and Parkinsonism,
as well as three previous hip replacements. After she initially refused
treatment, her daughter, who was her primary caregiver, called an
ambulance. Before the surgery could take place, she had several seizures.
She could only manifest grimacing and withdrawal. Her prospects for
recovery were described as dismal. At this point the attending physician
recommended a decision not to resuscitate in the event of a cardiac arrest,
often called a do-not-resuscitate (DNR) order.
Other family members agreed that the daughter was the patient’s proper
spokesperson. She rejected the DNR order. Upon consultation with the
hospital’s ethics committee, the chair of the committee indicated that resus-
citation would be “a violation of standard practices for this patient” (Paris
et al. 1999, p. 42). A DNR order initially placed was rescinded at the insist-
ence of the daughter. After many more days of further medical complica-
tions and deterioration, the ethics committee once again recommended the
placing of the DNR order, which was the course followed by the attending.
The attending informed the family and began the process of weaning the
patient from the ventilator. The patient died on August 10, 1989. The case
led the family to bring charges against the physician. After a trial in the
Superior Court of Massachusetts, the court ruled on April 22, 1995, that the
charges were not sustained (Kolata 1995a). The decision was widely
regarded as finding that the physician need not provide treatment that he or
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she deems futile even if the family insists. The exact meaning of the deci-
sion, however, is hard to determine since there was no opinion published
by the court. If the finding was that the physician need not deliver such
care, it conflicts with all the previous cases mentioned. There are several
other possibilities, however. Noting that Mrs. Gilgunn initially refused
treatment, some have suggested that perhaps the judge concluded that,
contrary to her daughter’s stated view, Mrs. Gilgunn really did not want the
resuscitation. That, of course, would not only permit the physician to with-
hold, but would require it. Others have noticed the ambiguity in the physi-
cian’s language describing CPR as “medically contraindicated” as well as
“inhumane and unethical.” There is some suggestion that the daughter
continued to believe that the resuscitation could be successful while the
physician’s reference to contraindication might suggest his belief that it
literally could not succeed in restarting her heart. In that case, this could be
a dispute over whether CPR was physiologically futile, an issue over which
we have suggested physicians legitimately claim authority. On the other
hand, claiming CPR was “inhumane and unethical” seems to suggest a
dispute not over whether CPR could at least temporarily succeed in restart-
ing her heart, but rather whether the pain and suffering CPR would cause
would be worth it — an issue of normative dispute. Still others have
pointed out that this case is unique in attempting to prosecute long after the
death of the patient a physician who unilaterally withdrew treatment. It
seems there is little the court could do at this point. By contrast the other
futile care cases have addressed decisions while the patient was still alive
and physicians were seeking authority to act unilaterally. Whatever the
explanation of the decision, some analysts have criticized the finding
(Capron 1995) and it conflicts with all the other US legal cases if it exoner-
ates the physicians.
State Futility Policies

In contrast with the case law, which, with this one exception, has sup-
ported the right of patients and families to have access to treatments
deemed futile by their physicians provided the five conditions mentioned
before are met, two states of the United States have attempted to speak to
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26 Chapter One
the issue of futility through legislative and regulatory approaches, both

appearing to carve out a set of circumstances under which a physician
could unilaterally withhold or withdraw treatments that are sustaining life
even though the patient or family objected to such action.
Texas and Virginia have adopted such policies. The Texas policy was,
by statute, incorporated into the Texas Advance Directives Act in 1999
and has become part of the Texas Health and Safety Code (1999).
Virginia’s policy is substantially similar in spite of the fact that the Baby
K case led to federal court decisions requiring at least emergency treat-
ment in that state. Section 166.052 of the Texas Health and Safety Code
sets out circumstances under which a physician may unilaterally withhold
or withdraw life-sustaining treatment against the wishes of the patient or
surrogates. If the physician considers the requested life-sustaining proce-
dure to be “inappropriate,” the patient or surrogate is to be given 48 hours’
notice that a committee will review the case and is entitled to attend the
meeting. If the committee concurs that the treatment is inappropriate, the
physician, with the help of the facility, must assist the patient in trying to
find a facility willing to provide the requested treatment. In the meantime,
the patient is to be given the requested treatment for up to 10 days. The
key sentence reads, “If a provider cannot be found willing to give the
requested treatment within 10 days, life-sustaining treatment may be with-
drawn unless a court of law has granted an extension” (Code of Virginia,
Title 54.1, Professions and Occupations, 54.1–2990). In other words,
Texas law authorizes a process whereby physicians may unilaterally with-
draw or withhold life support from patients who, in some cases, could live
with treatment (at least for a while) even though the patients or their sur-
rogates desperately want their life to continue. Virginia law does not
require referral to a committee and allows the patient 14 days to find an
alternative caregiver.
Given that this is a public, governmental policy growing out of legisla-
tion, it lacks some of the sophistication of the more nuanced discussion.
For example, no distinction is made between physiological and normative
futility. The physician must merely find the treatment “inappropriate.” The
policy has also been criticized because it leaves very sick and vulnerable
patients or their surrogates with the responsibility of finding alternative
facilities willing to take their cases within 10 days.
b1545_Ch-01.indd 26 5/27/2013 3:14:29 PM

Two cases have received considerable publicity related to this futility

policy. The earliest case involves an infant named Sun Hudson (based on
Veatch 2005; Hopper 2005. Note that there was some systematic confu-
sion regarding the infant’s first name. It was widely noted his mother
named him with a religious reference in mind. Some, in what now appears
to be an error, used the name “Son” (as in Son of God) while others, cor-
rectly, used the name “Sun” (as a reference to the Sun god).). Sun was
born on September 25, 2004, with a form of dwarfism and had lungs too
small to sustain life. The father was unknown. The mother, Wanda Hudson,
apparently suggested the boy’s father was the Sun, hence his name.
Physicians at Texas Children’s Hospital in Houston invoked the provisions
of the Texas Health and Safety Code that permitted unilateral withdrawal
of life support against the wishes of the mother, who protested. After the
10-day waiting period and some further delay involving legal complica-
tions, the physicians withdrew the tube supporting respiration. He died on
March 15, 2005, within a minute of the removal of the tube.
The Texas law, like other ambiguous futility policies, authorizes
removal of life support by a physician when the physician (with the con-
currence of a committee) finds the treatment “inappropriate,” thus failing
to distinguish claims based in medical science that the treatment will not
accomplish the intended purpose, from claims based in evaluative judg-
ments that the treatment’s effects are not sufficiently valuable. The fact
that Sun Hudson lived for six months, while the provisions of the Act were
executed, makes clear that the respiratory support was effective in pre-
serving life, at least in the short run. The case against Sun Hudson’s treat-
ment was either that such a life was of no value or that the pain he endured
was not worth it. In addition to the controversy over the use of the Texas
legal provision, the case posed additional problems. There were sugges-
tions that some doubted the mother’s mental competence to act as her
son’s decision-maker. Given the concern expressed about the suffering of
the child, it is possible that this case should have been handled not as a
futile care case, but rather as one involving a parent (like a Jehovah’s
Witness parent refusing blood) who makes a seriously inappropriate deci-
sion about what is in her child’s best interest. The medical personnel could
have followed the route of seeking to have her removed from the guardian
role on grounds of competence and had a court-appointed guardian make
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28 Chapter One
a best interest determination. If serious, needless suffering resulted from

the life support, the guardian may have decided to forgo further support.
A number of other cases of unilateral treatment withdrawal have been
reported based on the Texas Advance Directives Act. Since the law does
not require reporting such decisions it is impossible to know the number.
One report indicates at least 27 cases have occurred.
Many have noted a striking and problematic dimension of this case and
its relation to the case of Terri Schiavo, the Florida woman maintained for
many years in a vegetative state while various courts and government
agencies attempted to determine the proper decision-making proce-
dures for her care. In the Schiavo case, early courts (eventually sustained)
decided, based on testimony from her husband and others, that she would
want artificial nutrition and hydration removed so she could be allowed to
die. This was criticized by her parents, advocates for pro-life perspectives
(including some in the Catholic church), and eventually US President
George W. Bush, on the grounds that public policy should support life in
such cases. According to these critics, the courts and public figures should
not make use of the government apparatus to make decisions leading to
withdrawal of life support and the death of an incompetent and vulnerable
patient.
By contrast, the Texas Advance Directives Act futility provisions use
public policy adopted through state law to authorize ending the lives of
similarly vulnerable, incompetent patients even against the wishes of their
parents or guardians. The striking thing is that the Texas policy was signed
into law by the then governor of Texas, one George W. Bush.
Recently, efforts have been launched by pro-life advocates as well as
defenders of patients’ rights to repeal or modify the Texas Advance
Directives Act provisions authorizing unilateral forgoing of life support
against the wishes of patients and their surrogates. An amendment was
introduced into the 2007 legislative session that would have changed the
law to require that life support demanded by patients or family be contin-
ued until a patient can be transferred. The proposed law was called the
Patient and Family Treatment Choice Rights Act of 2007. The bill was
passed by the Texas State Senate, but was not acted upon in the House. In
subsequent years, further efforts to amend or repeal the law have been
attempted without success.
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HOW DECISIONS ARE MADE IN THE CASE OF FUTILE

CARE AND BY WHOM — PHYSICIAN? FAMILY MEMBERS?
OR TOGETHER?
As can be seen by this review, the debate in the United States over deci-
sions to withhold or withdraw treatments deemed futile by the physician
represents a shifting scene. As recently as the 1980s, some physicians in
the United States still insisted that they had the sole responsibility for
medical decisions and that their role as physician required first, and fore-
most, that they make decisions that would preserve human life whenever
possible. Hence, most physicians never faced the problem of deciding to
withdraw futile care that could effectively affect the dying trajectory of the
patient. If an intervention could preserve life, even briefly and even with
burden to the patient, that intervention was required. Patients, beginning
in the 1960s and 1970s, began to fight for the right to make decisions to
refuse such life-extending interventions when they believed the burden of
the treatment outweighed the benefits. In these choices they were sup-
ported not only by secular liberals and Protestants, but also by Roman
Catholics who had long endorsed a doctrine of extraordinary means that
accepted refusal of treatments that were, on balance, burdensome. Some
Orthodox Jews and some other groups generally too small to make an
impact on the public consciousness agreed with physicians that life should
always be preserved when possible, but lay people generally led the fight
to change public policy.
Very soon physicians joined the “death with dignity” movement and
began to articulate the view that preserving life in an unconscious or seri-
ously compromised state was not always worth it. Some physicians even
began to claim that such preservation was inconsistent with the ends of
medicine and that they had a moral duty to resist. This left minority
groups of patients — some pro-life Catholics and Protestants, as well as
some Jews and Muslims — dissenting from the new consensus and insist-
ing that life-supporting treatments be provided as long as certain condi-
tions were met. If the treatment would effectively extend life (even
briefly), was being considered in an ongoing doctor-patient relation in
which the doctor was competent to deliver the life-extending intervention,
was equitably funded, and served a fundamental interest of the patient,
patients from these minority perspectives increasingly insisted on their
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30 Chapter One
right of access. In this they were supported by some patients’ rights advo-
cates, even those who had earlier led the fight to get physicians to stop
imposing life support against a patient’s wishes. Since the vigorous
debate of the 1990s we are now in a more quiescent period where most
seem to assume that the advocates for patients and surrogates who want
treatments deemed futile by their physicians should have a right of access
provided the specified conditions are met. That has been the result of
almost all court cases. The major exception is in the states of Texas and
Virginia where unusual and controversial laws are still being debated. In
general, in the United States federal laws prevail over state laws so one
can assume that the federal decisions in the Baby K case that grant a right
to at least emergency life-prolonging treatment are established even if a
more general access to treatments deemed futile is still debated at least in
these two states.
HOW THE ISSUE OF MEDICAL FUTILITY IS DISTINGUISHED

FROM EUTHANASIA
In the United States the debate over medical futility has largely occurred
independent of the debate over euthanasia. This is in part because eutha-
nasia — defined as the intentional action to end a person’s life on the
grounds that the burdens are overwhelming — is sharply distinguished
from the patient’s right to forgo life support. While the former is generally
illegal (assisted suicide in Oregon, Washington, and Montana being the
exception), the right to refuse life support is now clearly established
legally and most people accept it ethically.
The debate over medical futility is seen as a corollary of the patient’s
right to forgo life support. The complicating feature is that a right of
access to treatments deemed futile by physicians requires the cooperation
of those physicians when professional autonomy has generally been the
norm. Forgoing life support requires only that the physician step aside;
granting access to treatments deemed futile requires the physician’s active
participation. Hence, the right of access cannot effectively be based on the
ethical principle of autonomy. It must rest on a duty of the professional
which has best been grounded in promises made as part of the establish-
ment of the monopoly privileges of licensure. If patients forswear the right
b1545_Ch-01.indd 30 5/27/2013 3:14:29 PM

to use life-prolonging medical technologies themselves, they must reserve

the right to get access to those technologies in cases in which they want
them and only licensed professionals are permitted to provide them. Hence,
even though professionals, like lay people, generally have an autonomy
right to control their own actions, they are seen as surrendering that right
as part of the establishment of the general social practice of medicine. Just
as physicians promise not to violate laws governing narcotics if they are to
be accepted practitioners, so physicians promise to use technologies that
effectively preserve people’s lives when patients want them preserved and
some carefully defined conditions are met.
FUTURE TRENDS AND DEVELOPMENT

Thus, the debate over medical futility in the United States has matured,
but has not been fully resolved. There is probably less debate over the
topic than there was in the 1990s, in large part because of the near-con-
sensus in the legal cases that patients and their authorized surrogates have
the authority to insist on continued life support in cases in which physi-
cians have claimed normative futility provided certain conditions are met,
including the legitimate claim that a desired intervention can produce an
effect sought by the patient or patient representative when the physician’s
reason for wanting to stop is not grounded in resource issues.
The most conspicuous unresolved problem is the law in the state of
Texas (and to a lesser extent in Virginia), which seems to authorize limited
cases of unilateral refusal of life support even though the patient or patient
representative can plausibly claim that the desired effect can be accom-
plished by medical intervention and a funding source is available to cover
the treatment. The paradox is that Texas is a state in which many assertive
advocates of the preservation of human life, when possible, voice their
“pro-life” views. It seems certain that the law must be clarified so that
so-called futile care that can really achieve the patient-centered objective
must be provided if no resource constraints are presented. It seems likely
that a coalition of those who are inherently “pro-life” and those who
defend the right of patients to their own choices will form and prevail.
This will still not address the much more complicated question of the right
of access to medical care when resources really are at issue. That question
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32 Chapter One
will be wrapped up with the current debate over the Affordable Care
Act, the Obama administration’s effort to provide near-universal health
insurance, which is so strongly opposed by conservative private property
advocates, but which was recently affirmed by the United States Supreme
Court.
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Capron AM. 1995. Abandoning a waning life [Catherine Gilgunn]. The Hastings
Center Report 25: 24–26.
Code of Virginia, Title 54.1, Professions and Occupations, 54.1–2990.
Council on Ethical and Judicial Affairs, American Medical Association. 1999.
Medical futility in end-of-life care. Journal of the American Medical
Association 281: 937–941.
Hopper L. 2005. Baby born with fatal defect dies after removal from life support.
Houston Chronicle, March 15. Available at: http://www.chron.com/news/
houston texas/article/Baby-born-with-fatal-defect-dies-after-removal-1498268.
php [Accessed March 1, 2012].
In re Doe, 418 S.E.2d 3 (Ga. 1992).
In re Jane Doe, a minor, Civil Action File No. D-93064, Superior Court of Fulton
County, State of Georgia, October 1991.
In re The Conservatorship of Helga Wanglie, State of Minnesota, District
Court, Probate Court Division, County of Hennepin, Fourth Judicial District,
June 28, 1991.
In the Matter of Baby K, 832 F.Supp. 1022 (E.D. Va. 1993).
In the Matter of Baby K, 16 F.3d 590 (4th Cir. 1994).
Jecker NS and Schneiderman LJ. 1993. Medical futility: The duty not to treat.
Cambridge Quarterly of Healthcare Ethics 2: 151–159.
Kolata G. 1995a. Court ruling limits rights of patients: Care deemed futile may
be withheld. New York Times, April 22, p. 6.
Kolata G. 1995b. Withholding care from patients: Boston case asks who decides.
New York Times, April 3, pp. A1, B8.
Lantos JD, Miles SH, Silverstein MD, and Stocking CB. 1988. Survival after
cardiopulmonary resuscitation in babies of very low birth weight: Is CPR
futile therapy? The New England Journal of Medicine 318: 91–95.
Lantos JD, Singer PA, Walker RM et al. 1989. The illusion of futility in clinical
practice. The American Journal of Medicine 87: 81–84.
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Newman R. 2012. One key sector that’s still shedding jobs. US News & World
Report, February 3. Available at: http://news.yahoo.com/one-key-sector-
thats-still-shedding-jobs-181314915.html [Accessed February 3, 2012].
Orr RD. 1999. The Gilgunn case: Courage and questions [editorial]. Journal of
Intensive Care Medicine 14: 54–56.
Paris JJ. 1993. Pipes, colanders, and leaky buckets: Reflections on the futility
debate. Cambridge Quarterly for Healthcare Ethics 2: 147–149.
Paris JJ, Cassem EH, Dec GW, and Reardon FE. 1999. Use of a DNR order over
family objections: The case of Gilgunn v. MGH. Journal of Intensive Care
Medicine 14: 41–45.
President’s Commission for the Study of Ethical Problems in Medicine and
Biomedical and Behavioral Research. 1983. Deciding to Forego Life-
Sustaining Treatment: Ethical, Medical, and Legal Issues in Treatment
Decisions. Washington, DC: US Government Printing Office.
Rawls J. 1971. A Theory of Justice. Cambridge, MA: Harvard University Press.
Rideout, Administrator of Estate of Rideout, et al. v. Hershey Medical Center,
Dauphin County Report, 1995, pp. 472–498.
Rubin SB. 1998. When Doctors Say No: The Battleground of Medical Futility.
Bloomington, IN: Indiana University Press.
Schneiderman LJ, Jecker NS, and Jonsen AR. 1990. Medical futility: Its meaning
and ethical implications. Annals of Internal Medicine 112: 949–954.
Texas Health & Safety Code, Chapter 166, Subchapter A, §166.046 and 52, 1999.
Velez v. Bethune et al., 466 S.E. 2d 627 (Ga. App. 1995).
Veatch RM. 1973. Generalization of expertise: Scientific expertise and value
judgments. Hastings Center Studies 1: 29–40.
Veatch RM. 2005. Terri Schiavo, Son Hudson, and ‘nonbeneficial’ medical treat-
ments. Health Affairs 24: 976–979.
Veatch RM. 2009. The evolution of death and dying controversies. The Hastings
Veatch RM and Spicer CM. 1992. Medically futile care: The role of the physician
in setting limits. American Journal of Law & Medicine 18: 15–36.
Youngner SJ. 1988. Who defines futility? Journal of the American Medical
Youngner SJ. 1990. Futility in context. Journal of the American Medical
Zucker A. 1995. Law and ethics: Withholding care: A test case [Catherine
Gilgunn]. Death Studies 19: 521–525.
b1545_Ch-01.indd 33 5/27/2013 3:14:29 PM

b1545_Ch-01.indd 34 5/27/2013 3:14:29 PM

CHAPTER TWO
THE REALITY OF MEDICAL FUTILITY

(DYSTHANASIA) IN BRAZIL
Leo Pessini and William Saad Hossne
SUMMARY
The ethical discussions of end-of-life issues are still somewhat consid-

ered a taboo in many countries of Latin America, including Brazil. Little
by little with the introduction of bioethics in the curriculum of the
healthcare professionals, this situation is changing. This article presents
the state of the art related to the issue of medical futility or dysthanasia
in Brazil. To explore the issue of medical futility in Brazil, this article
presents the healthcare system in Brazil, the issues related to end of life
in Brazil, some information about ICUs, do-not-resuscitate (DNR)
orders and advance directives as well as ethical-juridical discussions
about life-sustaining treatment. In doing so, the Brazilian code of ethics
and the new Code of Medical Ethics will be discussed. The issue of pal-
liative care as related to futility decision making also will be discussed.
35
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36 Chapter Two
INTRODUCTION
In Brazil, the concept of dysthanasia corresponds to therapeutic obsti-
nacy or withdrawal of treatment in end-of-life care. The term “futile
treatment” is more used in Anglo-Saxon countries, especially in the
United States, England, Australia and other English-speaking countries
(Schneiderman 2008; Cassel 1991). Therapeutic obstinacy, in its turn,
is the nomenclature adopted by the European countries and originates
from the French l’acharnement thérapeutique, an expression that arose
in the 1950s. In Brazil, the concept of medical futility is known as
dysthanasia, which occurs when we fail to recognize that a medical
intervention or a medical treatment is futile. By recognizing futile treat-
ments, physicians can step back and avoid relentlessly pursuing the
cure, where only care is applicable and necessary. Therefore, in this
scenario, in dealing with medical futility, palliative medicine needs to be
introduced.
The obsession with maintaining biological life at any cost leads us to
therapeutic obstinacy, or dysthanasia. In this context, the instruments,
which in principle are used for cure and care, are transformed into tools
of torture, imprisoning the patient amid tubes and appliances that do not
do any kind of good but just prolong a painful process of dying, treating
death as if it were a disease for which physicians must find a cure! We
must not forget that mortality is a dimension of our existence and that
death is a natural part of our life and medical investments or treatment at
the end of life must have a limit (Schneiderman 2008; Pessini 2005). The
concept of orthothanasia that was popularized in Brazil in the last dec-
ade by some bioethicists and the media is being used to differentiate
actions that would be promoting euthanasia, as well as actions that would
be promoting dysthanasia. Orthothanasia means by its philological roots
(Latin) “death in the right place and time” or “good death”. It’s situated
between two extremes. On one hand not to shorten the life of a patient,
which would be euthanasia. And on the other hand not to prolong the
long and painful process of dying, which would be dysthanasia. It should
be noted that the concept of orthothanasia used here is the same as that
of good death in the Anglo-Saxon culture (Pessini et al. 2010; Martin
1993, 1999).
b1545_Ch-02.indd 36 5/27/2013 3:14:43 PM

The Reality of Medical Futility (Dysthanasia) in Brazil 37
THE BRAZILIAN HEALTHCARE SYSTEM

According to the Brazilian Institute of Geography and Statistics (2010),
Brazil today has a population of 194 million inhabitants. Since 1988, with the
new Brazilian Constitution’s enactment, “the right to health for all” has been
proclaimed. With the new Federal Constitution, a radical transformation in
the Brazilian healthcare system has occurred. The healthcare system assumes
a universalist dimension, with health becoming the right of all Brazilian citi-
zens, independent of them being formal workers or not (Fortes 2012).
Article 196 of the Constitution states: “Health is a right of all and a duty
of the State, guaranteed by means of social and economic policies aimed
at reducing the risk of illness and other hazards and at providing universal
and egalitarian access to actions and services for its promotion, protection,
and recovery.”
In order to make the right to health a reality, the Single Health System
(SUS) was organized, with the following guidelines: (1) decentralization,
with a single direction in each sphere of government, (2) full assistance,
with priority for preventive activities, without prejudice to assistance ser-
vices, and (3) community participation.
Today the SUS is considered the largest public health system in the
world, assisting approximately 150 million Brazilians from the poorer
classes. Around 48 million Brazilians who have better life conditions,
those in the middle and upper class, have private health and insurance
plans. The SUS has currently over 55,000 health institutions, federal,
state, and local institutions, and a private philanthropic and charitable
network providing services through conventions with the SUS.
The budget for the Ministry of Health for 2011 was approximately
US$48 billion (68.8 billion reais), an amount considered still insufficient
to meet all the needs of the population. The SUS is the only alternative for
78% of the Brazilian population. The expenditure on health in Brazil rep-
resents 8.4% of the GDP. Out of this total, 58.4% was spent by families,
while 41.6% by the public sector. In the developed countries, 70% of
disbursements are covered by the government, and only 30% by the fami-
lies. In the country there are almost 432,000 hospital beds, 152,800 of
which (35.4%) are public and 279,100 (64.6%) belong to private and
philanthropic hospitals. The child mortality rate in 2010 was 19.88 deaths
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38 Chapter Two
per 1,000 live births. The average life expectancy of Brazilians reached
almost 73 years.
In Brazil there are 186 colleges of medicine and 371,786 physicians.
According to the World Health Organization, it has much more than nec-
essary to meet the population’s needs, but there is an unequal and unfair
distribution of physicians, with the majority prevalence in the country’s
southeastern and southern regions, and a shortage of medical profession-
als in the northern and northeastern regions.
The Brazilian Association of Intensive Medicine (AMIB) prepared in
2009 the first study intended at presenting a view of the scenario of intensive
care units (ICUs) in the country, the AMIB Census. In terms of intensive
medicine in Brazil, there are 2,342 ICUs with 25,367 ICU beds in 1,421
health institutions. Of these ICUs, adult ICUs make up 89%, neonatal ICUs
30.2%, children ICUs 19.7% and 0.6% of ICUs are for patients with burns.
It should be mentioned that 25.2% of these ICUs belong to the public
sector, 39.5% to the private sector and 33.5% to charitable/philanthropic
organizations.
According to the Ministry of Health (Directive no. 1101/CM, June 12,
2001) we have the following assistance cover parameters in terms of hos-
pital beds, which is estimated as follows: For total hospital beds, from 2.5
to 3 beds for every 1,000 inhabitants. For ICU beds, it is calculated, on
average, that 4% to 10% of total hospital beds are needed. This corre-
sponds to 1 to 3 ICU beds for every 10,000 inhabitants. The Brazilian
average is 1.3 ICU beds for every 10,000 inhabitants. As observed in rela-
tion to the number of health institutions, health professionals, hospital and
ICU bed numbers, the southeast and south of Brazil are well, while in
other Brazilian regions almost everything is missing (AMIB 2009).
END-OF-LIFE ISSUES AND THE CODE OF MEDICAL

ETHICS IN BRAZIL
In Brazil, dealing with end-of-life issues is based on the Code of Medical
Ethics which has been revised several times.
Brazil approved a new Code of Medical Ethics which became effective
on April 13, 2010. This achievement results from a long reflection and
revision process of the Code of 1988, led by the National Revision
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Commission of the Code of Medical Ethics with broad public participa-

tion. Our reflection is grounded in the study of the historic tradition of the
Brazilian Code of Medical Ethics.
In 2007, the Federal Council of Medicine (CFM), which is the highest
authority in the country regulating the professional exercise of the 371,786
physicians (December 2011) who work in Brazil, revised the previous
(1988) Code of Medical Ethics.
After 22 years, many things have changed in Brazil, especially in the
healthcare area, in terms of citizen awareness about the “right to health”
and also the ethical behavior of the population and healthcare profession-
als. The country has experienced a true technological revolution, which
has had a profound effect on human life, from before birth to after an
individual is declared dead. We are entering the age of genomics medi-
cine, telemedicine, medically assisted reproduction and nanotechnology,
to name just a few novelties. These are some of the factors that create a
new scenario in the healthcare system which requires bioethical reflec-
tion, a new ethical awareness and ethical guidelines.
In Brazil, in a period of nearly a century and a half, more precisely 145
years (1867–2012), nine codes of ethics have been introduced. These
codes are the first Code of Medical Ethics which was a translation of the
Code of Medical Ethics of the American Medical Association of 1867;
then the Code of Medical Morality in 1929; the Code of Medical
Deontology in 1931, 1945 and 1984; the Code of Ethics of the Brazilian
Medical Association in 1953; the Code of Medical Ethics in 1965 and
1988. The most recent one, the Code of Medical Ethics, approved on
August 29, 2009, became effective on April 13, 2010 (Martin 1993, 1996,
1999; Bertachini and Pessini 2011).
In a historical analysis of the evolution of the discussions about end-of-
life issues in Brazil we will begin with the Code of Medical Deontology
of 1945. The word “death” did not exist in that code. There is a discreet
reference to “death certificates” (Article 35.1.f/1945). In Article 56/1945,
there is a veiled reference to the terminal patient, in which the physicians
are obliged to notify, in certain cases, those who must know, the possibil-
ity of complications or a fatal outcome. However, it should be noted that,
accordingly, physicians decide how much information the patient must
have about his health condition, and not the patient. This shows how our
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40 Chapter Two
medical system is a paternalistic one, because everything depends on the

doctor’s judgment (Martin 1993, p. 74).
The doctor-patient relationship is marked by benign paternalism. That
Code also mentions what physicians are not allowed, which is “abandon-
ing chronic or incurable cases, without proven reason of force majeure”
(Article 4.1.1945). This Article is a revised version of the Code of 1929,
which states: “The doctor shall never abandon chronic and incurable
cases, and in difficult and prolonged cases it is necessary to hold confer-
ences with other colleagues” (Article 8/1929). In this regard the Code of
1931 states: “The doctor shall never abandon chronic or incurable cases;
and in difficult and prolonged cases it will be necessary and perhaps con-
venient to hold conferences with other colleagues” (Article 8/1931).
Another important provision of the Code of 1945 is related to the man-
agement of pain and suffering. In this Code, it is stated that it is the doc-
tor’s duty “to make use of the resources within their reach to alleviate
those who suffer” (Article 3.5/1945). The Code does not provide any posi-
tive hint as to how to proceed. It offers a negative hint by indicating a path
not to be followed: the option for euthanasia. The prohibition is absolute:
“The doctor is prohibited from advising or practicing euthanasia” (Article
4.5/1945). The Code of 1931 rejects euthanasia, but indicates the need of
alleviating pain without taking this “to the extreme of giving death by
mercy” (Article 16/1931). The Code of 1929 does not make any reference
to euthanasia. The only time the term “euthanasia” arises in the Brazilian
codes of medical ethics is in the Code of 1945 (Article 4.5/1945).
Another right of the terminal patient protected by the Code of 1953 is
the right of not being abandoned by the doctor. Article 32.a/1953 rein-
forces Article 4.1/1945 and provides that the doctor cannot “abandon the
patient, even in chronic or incurable cases, except due to an irremovable
impediment, which should be communicated to the patient or their
responsible party with the necessary advice”. This Code is important, as
it is an implicit recognition that the doctor’s role goes beyond the function
of curing. It is part of the doctor’s actions to follow up and take care of the
patient, even when facing a situation of impossibility to cure.
The Code of 1953 brings a novelty in relation to the previous codes as
to the value of human life. It provides that it is the doctor’s duty “to keep
absolute respect for human life, never using the technical or scientific
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knowledge to impose pain or provoke men’s extermination”. The Code of

1965 reaffirms this doctor’s duty practically with the same words. The
Code of 1953 deals with the need of alleviating and taking care of the
patient’s pain, as well as of the latter’s right of not being killed. “The doc-
tor has the duty of doing everything to alleviate the suffering of their
patient; however, the doctor will never resort to the excess of contributing,
by action or advice, to anticipate the patient’s death” (Article 56/1953).
The patient’s wellness requires that the pain be alleviated and that the life
must not be shortened by medical action.
Article 56/1953 represents an irresolvable dilemma for the doctor who
wants to sedate the patient with the aim of alleviating pain, but is aware
that this procedure will almost certainly have the side effect of shortening
the patient’s life. On the one hand, the text is emphatic in saying that the
doctor “has the duty of doing everything” for the suffering of their patient
to be alleviated, but, on the other hand, any action or advice that advances
death is rejected. The Code seems to suggest a hierarchy of values pursu-
ant to which the “alleviation of suffering” has precedence over the “abso-
lute respect for life”.
The Code of Medical Ethics of 1965 alters this hierarchy by establish-
ing, in Article 57/1965, that “The doctor cannot contribute, either directly
or indirectly, to accelerate the patient’s death”. When prioritizing the
absolute respect for life, the text leaves pain alleviation in the background,
and, besides, it prohibits not only any direct action, but also any indirect
actions that might accelerate death.
The Code of Deontology of 1984, as in the previous codes, approaches
the continuing stress between the effort of not causing unnecessary pain
to the terminal patient and an injunction that seems to oblige the doctor to
use all available resources in order to avoid the patient’s death (Article
1/1984). However, the emphasis on alleviating pain and suffering and
the emphasis on not accelerating the patient’s death continue side by side
without indication of how to solve the ethical conflict between the
requirements of both. Article 29/1984 prohibits doctors from “contribut-
ing to accelerate the patient’s death or using artificial means, when brain
death is proven”. Although a new concept of brain death is introduced
based on the technical-scientific evolution of medicine, and there are a lot
of ethical discussions around that, it does not clarify, let alone define, its
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42 Chapter Two
meaning. However, it is important to mention that the concept of brain

death appeared for the first time in the Code of 1984, although the issue
had already been discussed within the medical sphere since it arose in
1968 with the Harvard definition.
The Code of Medical Ethics of 1988 reinforces the patient’s right of not
going through a futile treatment. Article 60/1988, with its prohibition of
“complicating the therapeutics”, reiterates Article 23/1984. Another con-
cern expressed in this Code is the regulation of medical research on termi-
nal patients. Article 130/1988 prohibits the doctor from “carrying out
experiments with new clinical or surgical treatments in patients with incur-
able or terminal illnesses if there is not any reasonable hope for them, not
imposing additional sufferings on them”. In a quick view of the Code of
Medical Ethics of 1988 in relation to the end-of-life issues, 20 years having
passed since its approval, it can immediately be noticed that we lived in a
social, historic, cultural context of denying human finitude. It does not men-
tion the end of life and how to guide healthcare providers to deal with death
in an ethical manner. At most, the doctor is instructed how to act in the face
of “imminent life danger” (Articles 46, 56). Article 60 establishes that doc-
tors are prohibited from “exaggerating the diagnosis or prognostic serious-
ness, complicating the therapeutic”. Article 61, paragraph 2, provides that
“the doctors cannot abandon the patients because they bear a chronic or
incurable illness, but shall continue assisting them, even if only to mitigate
physical or psychic suffering”. Article 66 prohibits doctors from “using, in
any case, any means intended to abbreviate the patient’s life, even upon
their request or upon request of his legal representative”. Although the word
“euthanasia” is not employed, this is the issue at stake. The tradition of the
Brazilian medical ethics is against its practice as we saw in the analysis of
codes of medical ethics.
The New Brazilian Code of Medical Ethics

The most recent Brazilian Code of Medical Ethics enforced on April 13,
2010, promotes better end-of-life care by acknowledging the inevitabil-
ity of death and encouraging doctors to promote palliative care and
good death. We have witnessed some interesting changes, among others:
Chapter I, about fundamental principles, admits the “finitude of human
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life”. If one examines the 19 fundamental principles of the previous code

of medical ethics (1988), the patient never dies! It is strange, as in the
principle, the reality of human death is denied, that it furtively introduces
itself in clinical practice (Pessini 2010, 2011).
The current Brazilian Code of Medical Ethics, among the fundamental
principles (Chapter I), has two provisions which are in relation to the issue
of medical futility. Provision VI states: “The doctor will keep absolute
respect for the human being and will always act in their benefit. He will
never use his knowledge to cause physical or moral suffering, or some-
thing that would put in danger the life of the human being, or to omit and
cover attempts against their dignity and integrity.” Provision XXII reads:
“In the irreversible and terminal clinical situations, the doctor should
avoid performing unnecessary diagnostic and therapeutic procedures, and
will provide the patients under their attention with all appropriate pallia-
tive care.” Chapter V, which deals with the “relationships with patients and
family members”, it regulates medical procedures by saying that the doc-
tor is prohibited from “exaggerating the diagnostic or prognostic serious-
ness, and complicating the therapeutic” (Article 35). The following
Article, No. 36, states that the doctor is forbidden to abandon the patient
under their care. Paragraph 2 states that “the doctor will not abandon the
patient due to a chronic or incurable illness, and will continue to assist
them, even if for palliative care”.
This same Chapter V, which deals with the relationship “with patients
and family members” (Article 41), says no to the practice of euthanasia in
the caput and no to the practice of medical futility, and yes to palliative
care, in the sole paragraph: Article 36. “The doctor is prohibited from
abbreviating the patient’s life, even upon the patient’s request or upon
request of his legal representative. Sole paragraph reads as: “in case of
incurable and terminal illness the doctor shall offer the available palliative
care, without performing useless or obstinate diagnostic and therapeutic
actions, always taking into consideration the patient’s expressed will or
his legal representative’s decision, if the patient is unable to express his
wishes” (CFM 2010).
The new code of Brazilian medicine ends up incorporating into its text
the essence of Resolution 1805 (November 28, 2006) on Life-Sustaining
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44 Chapter Two
Treatment, that caused many discussions in Brazilian society. This issue

will be our next point of ethical reflection.
LIFE-SUSTAINING TREATMENT: ETHICAL

AND JURIDICAL DISCUSSION
Resolution 1805/2006 of the Federal Council of Medicine is an important
ethical document in the context of discussing the problem of good medical
care at the end of life in Brazil. This issue was linked with the possibility
of opening doors to the practice of euthanasia and the Federal Council of
Medicine launched a media campaign to influence public opinion and this
has created opportunities for public education regarding end-of-life
issues. Without doubt, all this context functioned as a preparation for what
would come soon, approval of the new Code of Medical Ethics (2010).
Resolution 1805 states:
“Article 1 — The doctor is allowed to limit or suspend medical procedures

and treatments that prolong the life of the patient in terminal stage of seri-
ous and incurable disease, respecting the person’s or the legally responsible
person’s will.
Paragraph 1 — The doctor must explain to the patient or to his legal
representative the therapeutic modalities which are appropriate for each
situation.
Paragraph 2 — The decision referred to in the main section must be sub-
stantiated and registered in the medical records.
Paragraph 3 — The patient or their legal representative has the right to
request a second medical opinion.
Article 2 — The patient will continue to receive all necessary care to relieve
symptoms that lead to suffering, guaranteeing full comfort, physical, men-
tal, social and spiritual assistance, including assuring him the right of dis-
charge from the hospital.”
This resolution elaborated by the Federal Council of Medicine provoked

an unprecedented reaction in the sphere of medicine itself, as well as in
the Brazilian juridical sphere and general public at large. It was wrongly
affirmed that the crime of murder would be characterized if the doctor
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limits or suspends treatments and procedures that are prolonging the life
of a patient in the terminal phase of an incurable disease, thus causing this
patient’s death (Andrade 2011).
On May 9, 2007, the Federal Public Prosecution Office brought a
Public Civil Action against the CFM and asked the Federal Justice to
revoke Resolution 1805/2006, alleging that the resolution would be open-
ing doors to the performance of euthanasia, and that the latter is character-
ized as a crime of murder pursuant to the Brazilian Criminal Code. They
claimed that the CFM surpassed the limits of its competence and violated
constitutional precepts, especially those designed to protect the inaliena-
ble right to life.
The Brazilian Penal Code (1940) does not typify either orthothanasia
or euthanasia. According to the perpetrator’s conduct, it can fit the provi-
sions for murder, assisted suicide, or can even be atypical. Despite this
lack of a typical conduct, in Brazil euthanasia is considered a crime. It is
placed under Article 121, which deals with murder. The most elementary
social rules are defined by law. In fact, within the latter’s scope, the mini-
mally ethical is given by criminal law. The Brazilian Criminal Code of
1940 precedes the technological revolution of the second half of the twen-
tieth century and could not expressly forecast hypotheses of such nature.
It is the construction promoted by the current law enforcers that will pro-
vide the answers, and for this it is essential to resort to other sources than
legal formalism alone.
There already have been perspectives ongoing for several years regard-
ing changes in the special part of that Code. The Criminal Code Draft Bill
introduces changes in the Special Part of the Code in force, in Article 121,
when dealing with murder.
Thus, we would have, in paragraph 3: “If the crime perpetrator is
spouse, companion, ascendant, descendant, brethren, or a person linked to
the victim by close ties of affection, and acted due to compassion, upon
the latter’s request, imputable, and over eighteen years of age, to abbrevi-
ate their unbearable physical suffering due to serious and terminal disease,
duly diagnosed: Penalty — Confinement, from two to five years.”
Paragraph 4 would read as follows: “It does not constitute a crime to
fail to maintain somebody’s life by artificial means, if death is previously
attested by two doctors as imminent and unavoidable, and if there is
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46 Chapter Two
consent by the patient or, if not conscious, by their spouse, companion,

ascendant, descendant, or brethren.” Thus we would have the regulation
of euthanasia and orthothanasia, respectively, weakening the former and
making it clear in the text of the law the nonexistence of an anti-juridical
act upon orthothanasia performance. Orthothanasia, from the criminal
viewpoint, constitutes an impossible crime, as there is not any crime
against life when the life is extinguished by itself. In fact, the vital cycle’s
natural closing is a common biological fact to the entire mankind, and
nobody can escape it.
The Federal Justice accepted the advance decision request contained in
the referred public civil action, and preliminarily suspended the validity of
CFM Resolution 1805/2006 in 2007. However, after the commission
heard about the life termination and CFM program in palliative care, they
stopped the case processing, because the Federal Public Prosecution
Service, the lawsuit plaintiff, recognized the mistake of their filing and
requested that their initial claim be deemed inapplicable, admitting that
orthothanasia is not a crime of murder and that the CFM has competence
to issue Resolution 1805/2006, as it is a resolution about medical ethics.
Upon the ruling issued by Federal Judge Roberto Luís Luchi Demo,
Federal Public Prosecutor Luciana Loureiro Oliveira concluded that
(1) The Federal Council of Medicine had competence to issue CFM
Resolution 1805/2006, which does not deal with criminal law, but instead
with medical ethics and the disciplinary consequences in the face of its
noncompliance; (2) orthothanasia does not constitute a crime of murder,
construing the Criminal Code in the light of the Federal Constitution;
(3) CFM Resolution 1805/2006 did not determine significant modifica-
tions in the day-to-day work of the doctors who deal with terminal
patients, and therefore did not generate the harmful effects alleged in the
public civil action complaint.
Thus, today, CFM Resolution 1805/2006 is fully enforced, and its main
concern is with the performance of orthothanasia and wanting to avoid
dysthanasia, without having anything to do with the performance of eutha-
nasia, as it was initially feared and judged. Therefore, this resolution is
considered constitutional, does not infringe any legal provision, does not
represent an apology for murder, nor provides incentives for the perpetra-
tion of any criminal or illicit conduct against human life, and is in compli-
ance with the Brazilian legal system.
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Cultural and Professional Resistance to Accepting

the Concept of Brain Death
In Brazil, the cultural and professional resistance to accepting the concept
of brain death promotes the practice of medical futility (dysthanasia).
Brain death is equivalent to clinical death, and therefore from the ethical
and legal perspective, after it is diagnosed, it is the doctor’s obligation to
remove life support. The withdrawal of life-sustaining treatment in this
situation is not considered euthanasia or any other type of offense against
life, as we are facing a situation of a dead and non-terminal patient
(Zafalon and Porto 2010, p. 261).
However, if in a brain-dead patient the organs are viable for transplan-
tation the organs will be removed and life support will be turned off with-
out any problem. The point is that if the organs are not viable life support
is not turned off, since it is claimed that it would be a euthanasia situation.
The brain-dead patient ends up being unnecessarily kept on life support
for the maintenance of their vital organs. This clearly is a practice of
medical futility or dysthanasia, which wastes medical resources and pro-
vokes more suffering to the patient, family members, and health profes-
sionals. The question is whether the patient is dead or not. We have
situations of much perplexity connected to the family members of the
deceased loved one, for instance when they notice that the body is still
warm and has a heartbeat, which contrast with algidity (coldness) and the
absence of a heartbeat, classic signs of human death.
In the presentation of Resolution 1826/2007, Councilor Gerson Zafalon
Martins justifies the complexity of the issue:
“… the CFM recognizes that society is not duly familiarized with this topic,
which generates anxiety, doubts and fears, however, if people face this situ-
ation in an understanding, humane, and solidary environment. Due to those
reasons, this resolution issuance has been justified and allow the ethical,
moral and legal discussion of the withdrawal of unnecessary and burden-
some treatments, facing death as a complement of life and not as an enemy
to be defeated at any cost” (Zafalon and Porto 2010, p. 262).
The CFM developed Resolution 1826/2007 (published in the Federal

Official Journal on December 6, 2007, in Section I, p. 133) which “provides
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48 Chapter Two
about the legality and ethical character of the therapeutic procedures and
supports suspension upon the brain death determination of a non-donor
individual”.
Article 1 reads as follows: “It is legal and ethical to withdraw the thera-
peutic support procedures upon the brain death determination of a non-
donor of organs, tissues and human body parts for transplantation
purposes, pursuant to the provisions of CFM Resolution No. 1480, of
August 21, 1997, and pursuant to Act No. 9434, of February 4, 1997.”
However, paragraph 1 states: “The fulfillment of the decision mentioned
in the caput must be preceded by communication and clarification of brain
death to the patient’s family members or its legal representative and reg-
istered in the medical records.”
The case of brain death shows the evolution of cultural attitudes
through more information and ethical education. The recognition that in
medicine sometimes we face a limit and that trying to cross it, i.e. provid-
ing futile medicine (dysthanasia), just causes more suffering for the
patient and family members is a positive sign of evolution.
The Role of Advance Directives

The advance directive was started in the USA in 1976, in the prospective
autonomy period, which grants decision-making autonomy to patients
who had previously registered their living wills. In its beginnings, the
American legislation recognized the patients’ right to refuse treatments for
incurable diseases, the treatment of which would only prolong the painful
process of dying, that is, to avoid futile and useless treatment or dysthana-
sia. It does not have anything to do with possible practices of abbreviation
of lives (euthanasia), and instead is a procedure that aims to avoid futile
treatment, the prolongation of the painful process of dying.
In Brazil, the discussion about living wills and advance directives is still
in the initial stage. The Federal Council of Medicine held in 2010 in São
Paulo an interesting workshop to approach this issue, and the Technical
Chamber on End of Life and Palliative Care of the Council began an
educational initiative for the public as well as medical professionals.
We still are at a moment of sensitization and awareness in relation to the
importance of this ethical instrument seeking to ensure human dignity, a
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moment very vulnerable to undue manipulations of and interferences with

people’s values (Siqueira and Brum 2010).
Far from being another step of bureaucratization of the medical–patient
and family relationship, in the more and more plural context in which
people find themselves as moral strangers, the advance directive has
become an instrument of defense of human dignity. Therefore, it is impor-
tant that we know, as very accurately defined by Spanish bioethicist
Miguel A. Sánchez González, that “the advance directive must primarily
serve for the patients to become aware of their treatment alternatives, to
get involved in certain choices and to control both the medical assistance
provided to them, and the way as their death will occur, everything
according to their own life values and objectives” (Sánchez González
2005).
In Brazil, through the Federal Council of Medicine, the discussion
about the implementation of living wills and advance directives has
started. Let us see what this document consists of. In times of techno-
scientific evolution in the sphere of life and health sciences, the techno-
logical imperative appeared. This intervention imperative has been
overcome little by little, with growing ethical awareness of limits in terms
of therapeutic investments, maintaining the functions of vital organs, and
end-of-life treatment. The patient’s autonomy and the respect for his val-
ues, mainly his autonomy in the decision-making process, is getting more
popularity and currently nothing happens in terms of treatment decision
making without his active participation (Siqueira and Brum 2010). In
Brazil’s healthcare system, in order to preserve the patient’s autonomy
and values and to overcome the old medical paternalism, the issue of free
and informed consent arose, and more recently advance directives, among
them living wills, which are valid for the situations in which the person
has become mentally incompetent or entered a permanent state of uncon-
sciousness, are getting more attention.
It is important to restrict the use of advance directives only to the situ-
ations of terminal illness and irreversible coma. It is a document in which
the patient, when still conscious (and mentally competent), formally
renounces certain treatments or interventions that would just add more
suffering. Another aspect to be observed is that this document can be
revoked at any moment by the patient. It happens sometimes that when the
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50 Chapter Two
patient becomes critically ill, he decides differently than what he had pre-
viously planned. The entire process is based on a dialog, a partnership and
collaboration seeking respect for the patient’s values and options. In order
for us to have free and informed legitimate consent, it is required to have
(1) necessary elementary information; (2) understanding about the infor-
mation; (3) freedom for decision making, without coercion, according to
the patient’s values; and (4) full capability and consciousness to decide in
relation to the issue.
It is important to note that one should be very cautious with forms with
microscopic text, signed in a hurry, without the necessary time to clarify
any possible doubts. Those documents, in their content, must contain the
secure intervention consequences, the frequent and serious risks, as well
as all information that a common person needs to know in order to make
the decision. Let us not forget that truth and freedom are the essence of
free and informed consent, and expressions of loyalty and respect towards
the patient.
The Do-Not-Resuscitate (DNR) Order in Brazil

In Brazil, most deaths occur in hospitals, more specifically in intensive care
units. While the mortality rate is around 3 to 5%, in adult ICUs it ranges
from 20 to 30%, there being distinct clinical and therapeutic differences
between patients who die in the wards and in ICUs. In general, patients
who die in wards are elderly, suffer from chronic-degenerative illnesses,
and in many cases receive comfort measures and/or are submitted to revival
when cardio-respiratory arrest occurs. The deaths of patients hospitalized
in ICUs makes up 30% of all patients. This figure can reach 70% when the
do-not-resuscitate order is enforced and respected, because any kind of
therapeutic intervention in this precise case would be just useless and futile.
Cardio-respiratory resuscitation maneuvers occur more frequently
when the patients have been hospitalized in ICUs for a short time. In those
cases, 40% of resuscitation attempts achieve immediate success; in 25%
the resuscitation only prolongs the dying process, and in 6% there is sur-
vival without any kind of consequences. Prolonging the dying process
causes suffering to all persons involved; patients, families as well as
healthcare professionals. Therefore this kind of painful situation should be
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avoided. The recognition of the legality of Resolution 1805/2006 (Federal

Council of Medicine) also eliminates any doubts related to the legality of
the non-resuscitation order. The ethical concern here is just to avoid any
kind of association with the practice of euthanasia, as well as dysthanasia
(AMIB 2009). The CFM through the End of Life and Palliative Care Task
Force prepared a resolution in 2009 about the DNR order, which still needs
the approval of the Assembly. Following is the essence of its content:
Article 1 reads: “In the cases of incurable and terminal illness, the doctor
must provide the patient with all appropriate palliative care, without per-
forming useless or obstinate diagnostic and/or therapeutic actions, among
them, cardio respiratory resuscitation.”
Article 2 reads: “The doctor must register on the medical records, the order
of not to resuscitate, collecting the patient’s written consent with the
respective signature. Such consent can be freely revoked at any time.”
Paragraph 1. The doctor must clarify to the patient the diagnostic and/or
therapeutic alternatives available for his case. Clarification when a treat-
ment is deemed “useless” is necessary. Special attention should be in
place if the direct communication may cause immediate harm to the
patient or aggravate the patient’s clinical conditions even further.
Paragraph 2. The patient is entitled to the constitution of a medical board
or to obtain a second opinion about his clinical conditions and about the
diagnostic and/or therapeutic alternatives available, before deciding
about the DNR order.
Paragraph 3. If the patient maintains verbal communication but is unable
to write or sign, the registration of their consent will be made by the
doctor, in the presence and with the signature of two witnesses who are
independent of the team responsible for the patient’s care.
Paragraph 5. The DNR order can be part of the Advance Care Directives,
and in this case is part of the medical records of the patient” (CFM 2012).
The great fear in this ethical issue is that when a DNR order is enforced,
euthanasia is being performed and the physician becomes vulnerable
before the law and can be prosecuted. Therefore, it is still difficult to
establish procedures of care at the end of life in Brazil. While Brazilian
intensive care physicians usually prefer no-resuscitation approaches, in
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52 Chapter Two
the Northern Hemisphere removing patients from mechanical ventilation

is part of routine care (Santos and Bassitt 2011).
Intensive Care Units and Palliative Care

Although intensive care units are intended to manage potentially recover-
able clinically unstable patients, many ICU patients eventually die from
multiple organ failure. In addition, some patients with chronic-degenera-
tive diseases are admitted to ICUs due to their underlying diseases. This
raises ethical issues related to both the appropriate care of terminal criti-
cally ill patients and resource allocation policies (Piva et al. 2011).
Promotion of better communication and ICU palliative care knowledge
may prevent conflicts and improve therapy for critically ill patients.
Respect for the patients’ and families’ socio-cultural and religious values,
evaluation of the ethical and practical consequences of the refusal or with-
drawal of futile treatments, and the administration of sedation are advised
to reduce the suffering of all parties. Proceeding with the Technical
Council on End of Life and Palliative Care of the Brazilian Association of
Intensive Medicine, considering the previously established concepts and
the need for the palliative care of all critically ill patients, the Second
Forum of the End of Life Study Group of the Southern Cone of America
was conducted in Brasilia in 2010. It aimed to develop recommendations
for palliative care for critically ill patients. Following are the recommen-
dations developed by this Forum:
1. Palliative care should be provided to every patient admitted to an

intensive care unit (ICU).
2. Intensive care phases should be clarified:
Phase I. A condition for which the team anticipates better outcomes

(recovery versus death or irreversibility). It is judged, respecting benefi-
cence and autonomy, that priority should be given to cure/recovery-
focused measures. Palliative care will be provided to relieve the
discomfort caused by the illness and the intensive therapy (death unlikely
to happen).
b1545_Ch-02.indd 52 5/27/2013 3:14:43 PM

Phase II. A condition for which the team perceives a lack of or an insuf-
ficient response to the interventions with a growing trend to a fatal out-
come or irreversibility. A consensus is established among the team,
patient and family member, and priority is given to the best possible qual-
ity of life; disease-modifying interventions can be provided when consid-
ered by the team and the patient/family to be proportional (death
anticipated within days, weeks or months).
Phase III. A condition for which the team acknowledges the disease irre-
versibility and imminent death, accepting the fatal outcome. Palliative
care should be the exclusive type of care provided, and all measures are
aimed to improve the quality of life and the patient’s/family members’
comfort (death anticipated within hours or days).
3. In all phases, customized care should be provided, sufficient to ensure

physical, psychological/emotional, and socio-cultural care for the
patient and their family, respecting bioethical, deontological and legal
perspectives.
4. In all phases, previous guidelines should be verified, as well as inter-
disciplinary diagnosis, prognosis and therapy evaluations, family
members’ understanding and the identification of potential conflicts.
5. During the first phase, the care emphasis is placed on the support of
the patient’s vital systems and on full recovery, but the psychological/
emotional comfort of the patient/family should never be neglected.
6. During the second phase, emphasis is shifted to offering and main-
taining a set of measures aimed to ensure the physical and psychologi-
cal/emotional comfort of the patient/family.
7. During the third phase, the emphasis is focused on offering physical
and psychological/emotional comfort measures to the patient/family.
The importance of the avoidance of starting and/or maintaining
unnecessary and futile treatments should be emphasized. Privileging
communication and better conditions for the family to stay with the
patient and get prepared for the death.
8. During palliative care preferential emphasis should be focused on the
patient’s welfare, especially regarding preferences and symptom con-
trol (pain, discomfort, dyspnea, dry mouth, noisy breathing, etc.).
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54 Chapter Two
9. When crossing from the second to the third phase, it is crucial to pro-
vide assistance with the decision-making process to the patient and/or
family to establish a consensus, based on the severity of the condition
and the patient’s/family’s preferences and values. The model could be
either more paternalistic or more participative. The development of
communications skills is fundamental to providing this assistance
(Moritz et al. 2011, p. 27).
Aiming to improve the care of critically ill patients, the recommendations

focused on the qualifications of the multidisciplinary team that deliver
palliative care. However, there is no need to separate ICU and palliative
care. Palliative care should be included in good ICU practices, both for
adults and for children (Moritz et al. 2008).
CONCLUSION
In Brazil, the legal framework for palliative care and end-of-life care is
progressively being revised, as we saw through the reflective ethical jour-
ney in this paper. As in other countries, such regulatory changes are usu-
ally complex and progress slowly (Bertachini and Pessini 2011). A recent
study done by Forte et al. (2011) presents the results of a questionnaire
submitted to 105 Brazilian ICU physicians selected from 11 ICUs in a
university-affiliated hospital evaluating end-of-life decisions involving a
hypothetical severely brain-damaged patient with no family members or
advance directives. The study has two major findings that goes together
with our convictions in these concluding remarks of the paper: (1) physi-
cians who would not apply do-not-resuscitate orders less frequently
attended end-of-life courses; and (2) almost half of the respondents would
not proceed according to what they believed to be most appropriate for the
patient (i.e. provide less aggressive futile treatment), motivated chiefly by
legal concerns, the fear of being prosecuted. As expected, both the interest
in and reading about end-of-life issues were lower in physicians who
would apply “full code” status than those who would decide to withdraw
life-sustaining therapies.
Furthermore, it has been demonstrated that younger physicians and ICU
physicians reading at least four articles per year on ethical aspects were
b1545_Ch-02.indd 54 5/27/2013 3:14:43 PM

more prone to involve family and nurses in the end-of-life decision-making

process, as well as making proactive decisions (Forte et al. 2011; Soares
and Piva 2012). According to Forte et al., in Brazil, legal and ethical codes
remain uncertain, increasing the fear of prosecution for many profession-
als. Despite these concerns, withdrawal and withholding of life-sustaining
treatments are increasingly practiced in Brazil, and in some circumstances,
even desired by patients’ families. In 2010, the Brazilian Federal Council
of Medicine included palliative care as an option during end-of-life care in
its Ethical Code and, recently, ethical statements have addressed the pos-
sibility of withdrawal of life-sustaining treatment in end-of-life situations.
Our study provides evidence that these legal concerns may compel physi-
cians to have a more aggressive attitude during end-of-life care, despite
their belief that this approach may not be the best for the patient. This
observation raises some concerns about whether Brazil’s legal standing on
end-of-life issues is protecting patients or causing them harm. This
dilemma needs to be addressed in open discussions involving the society
in order to improve patient care at the end of life (Forte et al. 2011).
This study demonstrates that ethical knowledge positively modifies the
end-of-life decision-making process and provides additional evidence that,
like any other procedure or intervention performed in ICUs, specific training
in end-of-life issues should be formally incorporated into training programs
in critical care. So, the key message is that by providing ethics education
we can improve the quality of care for patients at the end of their lives.
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Fortes P. 2012. SUS, um sistema fundado na solidariedade e na equidade e na
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Soares M and Piva JP. 2011. Editorial: Physicians just need to be better trained
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CHAPTER THREE
MEDICAL FUTILITY AND END-OF-LIFE

ISSUES IN BELGIUM
Jan L Bernheim, Thierry Vansweevelt and

Lieven Annemans
SUMMARY
Together with the Netherlands and Luxembourg, Belgium is so far

unique in having legalized physician-assisted dying. Because Belgian
palliative care is among the most developed in Europe, medically futile
treatments at the end of life are likely reduced. Moreover, because
-uniquely- Belgian palliative care has largely adopted the possibility of
euthanasia, integrating it in “comprehensive palliative care”, also the
initiation or continuation of palliative care can be avoided by those
patients who (have come to) consider it futile. The Belgian model of
“comprehensive end-of-life” care is thus able to reduce both medical and
palliative futility at the end of life, and likely to do so.
59
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60 Chapter Three
INTRODUCTION AND GENERAL ETHICAL ISSUES

Belgium is no exception among other countries in having to come to grips
with medical futility (in Dutch usually called “therapeutische hardnek-
kigheid” and in French “acharnement thérapeutique”, which best translate
as “therapeutic obstinacy”). The motives to discourage or curb medical
futility, as elsewhere, are at the same time clinical, ethical and economi-
cal. Medical futility occurs either at the initiative of physicians or at the
request of patients, and sometimes both, when physicians and patients or
their representatives concur in wishing for physiologically futile treatment
to be initiated or prolonged. Physiologically futile treatment has no physi-
ological benefit because it is ineffective. Examples are prescribing an
antibiotic for a benign viral infection or cardiopulmonary resuscitation of
a patient with end-stage myocardial dysfunction. Physiological futility is
based on objective, evidence-based criteria. It is bad medicine, because it
violates all of the four classical medical-ethical values (Beauchamp and
Childress 1979): it does no good to the patients, it harms them, it often
violates their autonomy and it causes injustice as it drains resources which
are denied to others who need them (Niederman & Berger 2010).
Physician-initiated medical futility, when its motives are to serve the
interests of the caregiving staff or institution, can be an extreme case of
“strong” paternalism, where against the patient’s wishes, others decide for
patients to do them fictitious good and even to harm them, It can also
belong to “weak” paternalism when it is done without the patient having
a preference. If the latter situation results from the patient not having been
informed of the options and issues at stake, such medical futility is both
unethical and illegal.
If, in contrast, medical futility occurs at the explicit request of the
informed patient, against the “physiologic” judgment of the physicians
who, if they accept, then place the patient’s values above their own, we
have an ethically quite different situation. This is what has been termed
“normative futility” (Younger 1990). The patient’s values can then be
argued to be served since the patients exert their autonomy and feel they
benefit from futile treatment. In such cases, only the justice principle is
violated. Futile treatment at the request of the patient poses a difficult
problem of conflicting interests: the values of the individual patient are
then at odds with the doctor’s and the interest of society. An intermediary
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Medical Futility and End-of-Life Issues in Belgium 61
sub-category of medical futility is when it is prompted by the patient’s

relatives, in the best of cases to soothe their conscience, in the worst for
secondary gain. There are for Belgium no epidemiological data on which
of physician or patient-prompted futility is -quantitatively, i.e. in terms of
number of cases and financial burden- the most important problem.
Another complication relative to straightforward cases is when the val-
ues at stake are not binary or categorical (e.g. life prolongation of a per-
manent vegetative condition or not), but quantitative (e.g. life prolongation
for a minimal time or not, or life prolongation at the cost of severe suffer-
ing). In the latter cases, there is problem of proportionality and a balance
of pros and cons has to be made.
In the USA, although the debate is still ongoing (Schneiderman 2011),
much jurisprudence and some jurisdiction seem to have gone beyond the
negative right of a patient to refuse treatment to the positive right to obtain
treatment, even when physiologically futile. According to some case law,
this is also when the demand comes not from the patients themselves, but
from relatives (e.g. who attach normative value to the continuation of
physical life of the body of an irreversibly unconscious person) (Veatch
2009). Thus, the autonomy of the patient (or their relatives) seems to be
given priority over the autonomy of the caregiver, both for refusing any
treatment and for demanding physiologically futile treatment (Lantos
et al. 1989). Concisely put, concerns over medical futility seems in the
USA to be more concerned with protecting the physician from patients’
futile demands than with protecting the patient from physician-driven
futile treatment. Not so in Belgium, where only the negative patient right
to refuse treatment is legally enforced, and also –theoretically- the duty of
physicians to refrain from futile treatment, as will be detailed below.
However, the contrast between the USA and Belgium is likely to become
less marked since also in America physician-driven futile treatment is
under increased scrutiny (Earle et al. 2008, Ho et al. 2011).
THE HEALTHCARE SYSTEM IN BELGIUM

Belgium is a constitutional monarchy with a parliamentary system of
democracy. Over the last decades it has become an increasingly decentral-
ized federal state, with ever-increasing devolution of competences to the
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62 Chapter Three
Flemish and Walloon regions and the (bilingual) Brussels-capital region.

Federal Belgium, Flanders, Wallonia and Brussels all have their own par-
liaments and administrations. Taking a broad view, as more and more
judicial, ecological, financial and economic decision-making has gone to
the European level, and in Belgium ever more competences are devolved
to regional authorities, the responsibilities of the Belgian federal govern-
ment are gradually shrinking. Only about 60% of government expenditure
is federal. Only the ministries of defense, foreign affairs, finances and
justice are wholly federal competences, as is to a large extent social secu-
rity. There is a federal Belgian minister of health and social affairs, but
also the regions have such administrations. This devolution has the advan-
tage of reducing the distance between government and the citizenry, but it
often entails a complex, arduous and lengthy decision-making process.
Belgium’s population, which has been slightly growing over the last
decades due to immigration, stands at about 11 million in 2012. Children
(0–17 years), adults (18–64 years), and elderly people (≥65 years) consti-
tute 20.6%, 62.4% and 17.1% of the total population, respectively. The
average lifespan in Belgium was 77.36 years for men and 82.64 years for
women in 2010 (statbel.fgov.be).
Belgium has universal health insurance, which is financed not by taxes
but by contributions to social security by individual citizens, including
employers, employees and also pensioners. In addition, people increas-
ingly tend to buy complementary private insurance. Medical technological
progress, the aging of the population, unemployment at ~9% and a ten-
dency over the last decades to ever shorter working careers (during which
time citizens contribute to social security) because of longer education
and earlier retirement put the social health-insurance system under
increasingly severe financial strain.
The health-care delivery system in Belgium can be characterized as
liberal (free choice of caregivers, fee-for-service), with strong cooperative
and solidarity corrections. Citizens are members of the non-profit coop-
eratives called “mutualities” which reimburse them of (the largest part of)
their health-care expenditures. In effect, the mutualities are the executive
branch of the National Institute for Health and Disability Insurance
(NIHDI). People choose one of 7 mutualities, some with a political
denomination (Christian, Socialist, Liberal…), others neutral or
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independent mutualities. All are entrusted by the NIHDI to deliver core

services such as (partial) reimbursement of health-care expenses and
home nursing care. Mutualities in addition offer various optional services
such as preventive care and children’s vaccination. Some mutualities also
run out-patient clinics.
The NIHDI insurance coverage includes medicines, physician consul-
tations, interventions, lab tests and imaging, hospitalization and nursing
care.
In 2010, only 0.96% of residents of Belgium were uninsured (ww.riziv.
be), many of them illegal refugees or immigrants. However, their
emergency needs are met by municipal “public assistance” and in a few
cases charities. Insured members pay a varying % of medical expenses
out-of-pocket, ranging from 0% for approved treatments for life-
threatening conditions to 100% for e.g. some optional aesthetic surgery,
depending on perceived need. Burdens on the elderly, children, and low-
income individuals are lower. Medicines are reimbursed between 100%
for cost-effective drugs used in life-threatening diseases such as cancer
and 0% for drugs which by the NIHDI are judged not effective or not
cost-effective.
The medical profession is subject to the oversight of the Ordre des
Médecins/Orde van Geneesheren (Medical Disciplinary Board or Medical
Order), an elected body with provincial councils, which issues guidelines
and adjudicates disputes and complaints. It is also subject to the
Provincial Medical Inspection. Most doctors and paramedics are mem-
bers of unions and scientific and/or professional interest associations. A
Federal Health Council advises on quality of care and prevention, but has
no jurisdiction over the payment system. Health-care delivery is at three
levels: primary (including general practitioners (GP), senior citizens’ and
care and nursing homes, with a nursing staff but where residents have
their own GP), secondary (including municipal and regional hospitals)
and tertiary (university hospitals and specialized referral centers).
Patients choose their GP, but these are not gatekeepers to the consultation
of specialists, who can be consulted directly. This has the advantage of
high accessibility, but the drawback of some duplication of e.g. examina-
tions and some overconsumption of services. The overall density of
Belgian physicians is about 40,000, of which 25,000 are specialists.
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64 Chapter Three
Belgian GP’s have a very high density (1.3 active GPs per 1000 inhabit-
ants), practice an exceptionally high rate of home calls (26% of all con-
sultations) (FOD Volksgezondheid 2011) and are on record as usually
quite knowledgeable on their patients’ psycho-social environment.
The number of hospital beds is 6.7 per 1000 inhabitants. The average
duration of hospitalization in 2008 was 5 days, down from 5.9 days in
2005. The average cost of care per year for patients without a chronic
disease is €1.381, whereas for chronic patients this amounts to €10.827
(www.riziv.fgov.be). The % of lifelong healthcare expenditure used dur-
ing the last month of life has not yet been calculated.
As for output results, Belgian health indicators and outcomes are gen-
erally considered to be in the upper-middle range of European countries.
According to the European Values Study the confidence of Belgians in
their health care system rose from 87% in 1999 to 92% in 2008, after
Iceland the highest in Europe (European Values Study 2008 and Halman
2011). The 2002 legalization of euthanasia, the generalization of palliative
care and the law on patients’ rights, probably the most important changes
in health care in the past decade, rather seem to have increased the confi-
dence of the public.
Under the auspices of the NIHDI there are yearly negotiations on the
organization of care, the registration of “heavy” equipment and services
such as NMR and PET-CT and selection for and level of reimbursement
of services. Caregivers are represented by their unions and patients by the
mutualities. Physicians who adhere to the convention (the vast majority)
pledge to apply the national fees for most of their working time and are
rewarded by a payment to their personal retirement plan.
Planning, regulation and management of specialized or multidiscipli-
nary care is organized by the NIHDI. Registered regional or university
cancer centers must offer multidisciplinary services and tumor-board
deliberation of cases. Other examples are officially registered centers for
assisted procreation and genetic counseling. The objectives of this system
are to ensure optimal distribution of state-of-the art health care and to
control expenses. The current politically decided benchmark is a yearly
growth of health-care expenditure of 2% (excluding inflation). In the
recently shrinking economy, this is a major challenge.
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ETHICS IN END OF LIFE SITUATION IN BELGIUM

Epidemiological Data
The mortality rate in Belgium is 0.958% per year, with 105,094 annual
deaths. Place of death is a hospital in 52%, the home in 22%, a care and
nursing home in 22% and 2% elsewhere. This falls well short of expressed
patients’ preferences, of which too few physicians are aware (Meeussen
et al. 2009). In Flanders (Belgium) 72% of the citizens in case of advanced
cancer wish to die at home and 10% in a hospice or palliative care unit
(Gomes et al. 2012). Causes of death are cardiovascular disease (32%),
cancer (27.1%), respiratory diseases (11%) and unnatural deaths (acci-
dents, suicide) (6.4%) (www.statbel.be). Palliative care, the treatment
modality aimed at “total” physical, emotional, social and spiritual comfort
at the end of life, at the exclusion of further attempts to prolong survival
by clinically burdensome and costly disease-directed treatment, is explic-
itly an alternative to medical futility. The penetration of palliative care is
high in Belgium: 41% of all non-sudden deaths are preceded by organized
multidisciplinary palliative care during the last three months of life (~30%
of all deaths), (Van den Block et al. 2008). Roughly on a par with the
Netherlands and the United Kingdom, Belgium belongs to a cluster of
European countries with the highest level of development of palliative
care (Chambaere et al. 2011). The Benelux countries, are currently the
only worldwide to have legalized and regulated euthanasia (Belgium and
the Netherlands in 2002 and Luxembourg in 2009). Life-ending acts at the
explicit request of the patient are legal (under strictly defined conditions1)
when the patient considers the initiation or pursuit of palliative care futile.
Contrary to official stances elsewhere (Materstvedt et al. 2003), in
Belgium palliative care and euthanasia are not at all opposed propositions,
1
Euthanasia is legally defined as intentionally terminating the life of another person, at this
person’s request. It is legal under 2002 Belgian Law under the following conditions:
• Repeated consistent request, under no external pressure, in writing (with witnessed
written advance directives for the future case of irreversible incompetence).
• Competent adult patient
• ‘‘Intolerable” and irreversible suffering, physical and/or mental
• Caused by an irreversible medical condition
• Patient duly informed of alternatives, including palliative care
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66 Chapter Three
ALL
Comprehensive PATIENTS
End-of-Life Care
Conventional
~30%
Palliative
Care ~1%
~1%
Comprehensive
Physician-
Palliative
Assisted Dying
Care
Fig. 1. The Belgian model of comprehensive end-of-life care.
but were historically synergistic. The first palliative care initiatives were
taken by advocates of legal euthanasia, who went on to prominently con-
tribute to the development of the palliative care system. Vice-versa, ade-
quate palliative care made the legalization of euthanasia ethically and
politically acceptable. The Belgian model (Figure 1) is best described as
“Comprehensive End-of-Life Care” (Bernheim et al. 2008).
The Venn diagram shows that comprehensive Palliative care is conven-
tional palliative care (as practiced in countries without legal euthanasia)
offering also the option of euthanasia. A reasonable estimate based on the
study of Belgian patients during the last three months of their lives is that
about 30% of all deaths (41% of all non-sudden deaths) are preceded by
organized multidisciplinary palliative care, and that about 2% die with
euthanasia, half of them after a palliative care pathway (Van den Block
• Carried out by physician, after consultation of nursing team and a competent colleague,
who must examine the patient, verify the fulfillment of the legal requirements and write
his findings in the patient file
• The physician must be present till the death of the patient
• If the patient is not expected to die within the foreseeable future, two colleagues must
be consulted and a moratorium of one month respected
• Report to the Federal Control & Evaluation Commission of Euthanasia for accountabil-
ity. Auditing in cases of doubt. Referral to the public prosecutor possible.
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et al. 2008). Significant numbers of caregivers are conscientious objectors

to euthanasia, which is respected by the law and in practice. The physician
refusing to carry out euthanasia must in due time inform his patient of this,
giving also the reasons for his refusal (Art. 14 of the Euthanasia Law). If
the refusal is on medical grounds, this must be documented in the patient’s
file. The evolution of the epidemiology of end of life decision with a pos-
sible or certain life-abbreviating effect is shown in Table 1.
Table 1. Frequency of Medical End-of-Life Practices in Flanders, Belgium, 1998, 2001

and 2007.*
Variables 1998 2001 2007

Total annual death, No. 56,354 55,793 54,881
Death in study sample, No. 3,999 5,005 6,202
Response rate % 48.2 58.9 58.4
Deaths included in
analyses, No. 1,925 2,950 3,623
Sudden deaths %
(95% CI) 33.3 (31.2–35.5) 34.1 (32.2–36.1) 31.9 (30.0–33.8)
Medical end-of-life practices
that certainly or possibly
hastened death %
(95% BI) 39.3 (37.0–41.6) 38.4 (36.6–40.3) 47.8 (45.9–49.8)
Use of life-ending drug 4.4 (3.5–5.5) 1.8 (1.4–2.4) 3.8 (3.2–4.5)
With patient’s explicit
request (Euthanasia) 1.1 (0.7–1.7) 0.3 (0.2–0.5) 1.9 (1.6–2.3)
Physician-assisted suicide 0.12 (0.04–0.36) 0.01 (0–0.1) 0.07 (0.02–0.2)
Ending life without patient’s
explicit request 3.2 (2.4–4.1) 1.5 (1.1–2.0) 1.8 (1.3–2.4)
Intensified alleviation of
pain symptoms 18.4 (16.6–20.4) 22.0 (20.5–23.6) 26.7 (25.1–28.4)
Withholding or withdrawing
life-prolonging treatment 16.4 (14.7–18.3) 14.6 (13.2–16.1) 17.4 (15.9–19.0)
Continues deep sedation %
(95% BI) NA 8.2 (7.2–9.4) 14.5 (13.1–15.9)
*All percentages were adjusted for stratification (according to the underlying cause of death as
indicated on the death certificate and the estimated corresponding likelihood of an end-of-life decision
having been made) and for characteristics of deaths (age and sex of the patient and place and cause
of death). CI denotes confidence interval and NA not available.
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68 Chapter Three
The total number of medical end-of-life decisions with a possible or

certain life shortening effect increased from 39,3% in 1998 to almost half
of all deaths (47.8%) in 2008 (Bilsen et al. 2009, Chambaere et al. 2010b).
The increase was almost entirely attributable to intensified treatment of
pain and symptoms with a possible life-abbreviating effect. There was no
evidence of vulnerable patients being more at risk of euthanasia. On the
contrary, e.g. persons over 80 years old were and remained under-repre-
sented among euthanasia recipients (Rietjens et al. 2012). Continuous
deep sedation is an ever increasingly applied modality of end of life care.
Palliative sedation is the keeping comatose of (pre-) terminal patients until
their death, whether or not with “windows” of consciousness (in which
case it is called “controlled sedation”), with or without continued admin-
istration of fluid and nutrition. The latter form of end of life is sometimes
considered as “slow euthanasia”, and is quite common in palliative care.
The evolutions between 1998 and 2007 reflect the ever growing impact
of palliative care because what most increased are the practices belonging
to the standard armamentarium of conventional palliative care. The year of
2001, with a lower number of medicinal life terminations, is a particular
case because this is when the euthanasia law was being debated and there
were more indictments, resulting in more legal insecurity. The incidence of
euthanasia rose from 1.1% in 1998 to 1.9% in 2008. In 2008 euthanasia was
practiced more in the patient’s home (50.3%), and more in cancer (80.2%),
with younger patients (only 20.4% of euthanasia cases were in patients
older than 80). The administering of drugs with the explicit intention to
shorten survival without the patient’s explicit request decreased from 3.2%
to 1.8% (Van den Block et al. 2009). Presumably, most of these cases are
now euthanasia. They are vehemently objected to by opponents of euthana-
sia (Pereira 2011) whose arguments are criticised (Downie et al. 2012).
These unrequested life terminations were specifically studied in 2007. They
were compared to euthanasia cases (by definition upon explicit request) and
to all deaths. The drugs administered were usually not barbiturates and
muscle relaxants, as for euthanasia, but opiates, whose lethal effect is
improbable. In contrast to euthanasia a majority of patients are here older
than 80 years (52.7%), unrequested life termination occurs in two-thirds of
cases in a hospital, and two-thirds with diseases other than cancer, namely
less chronic diseases, with a less predictable course, offering less
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opportunity for advance planning. The vast majority were agonal patients
who had become incompetent, 70% of them comatose and 21% demented.
In eighty per cent, the decision was deliberated with family. Whereas in
euthanasia, family also expressed the wish for life termination in only 25%
of the cases, this was fifty per cent for unrequested life abbreviation. In half
of cases the estimated life abbreviation was less than 24 hours (whilst in
euthanasia it was so short in only 11.4%). The category of “administering
of drugs with the explicit intention to shorten survival without the patient’s
explicit request” in the death-certificate epidemiological studies in fact
results from two questions only on “life-abbreviating intention” and
“explicit request”, respectively. Euthanasia and unrequested life abbrevia-
tion are clinically quite different practices, largely in other patients and
circumstances and the latter must be understood as compassionate intended
abbreviation of the agonal phase of dying. According to most physicians in
most countries, this belongs to traditional humane medical practice, but it is
revealed only in those few countries in which epidemiological studies of the
end of life have been carried out and in which physicians are less prone to
applying the “double effect principle” (McIntyre 2004, White et al. 2011).
This said, the statistical data do not exclude clandestine unethical practices,
but if such occur, they are rare, and because of increased scrutiny and soci-
etal control, probably less likely than in the past.
Between 1998 and 2007 medical end-of-life decisions were increas-
ingly discussed with patients, their family, colleagues and nursing staff,
which suggests more carefulness. It should be noted that in 1998, 44% of
end-of-life decisions were discussed with nursing staff with a peak of 66%
in 2001 and a decrease to 51% in 2007, which leaves to be desired (the
peak in 2001 may reflect the then prevailing legal insecurity and a few
indictments of doctors by e.g. nurses or family who objected to euthanasia
and/or had other grievances).
Some other numbers are still less than fully satisfactory. In 2007, in
about 20% of drug-mediated life abbreviations, no colleague was consulted
and the reporting rate of euthanasia, though gradually increasing towards
80%, was still suboptimal. The latter can be inferred from the difference
between the number of cases reported to the Federal Control and Evaluation
Commission (Smets et al. 2010) and the estimates of euthanasia incidence
in the successive population-based epidemiological studies (Bilsen et al.
2009, Chambaere et al. 2010a, Van den Block et al. 2009).
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70 Chapter Three
In sum, during the preparation of the legalisation of euthanasia Belgian

doctors increasingly applied the precepts of conventional palliative care
avoiding futile disease-directed treatments and since legalisation even
more so. The recent epidemiological data on end of life practices confirm
the concomitance of palliative care and euthanasia. In hospital-based pal-
liative care units, prior to non-sudden deaths, more possibly or certainly
life abbreviating end of life decisions are made than in general wards. For
euthanasia this is 3% versus 1%. These data were obtained with a different
methodology from the preceding death certificate studies (Van den Block
et al. 2007), via the Sentinel Network of General Practitioners (GPs), a
surveillance panel of GPs who are representative for all GPs and nursing
home physicians in Belgium. For these studies the sentinel GPs described
the pathway of their patients who died in 2005–2006. The relationship
was investigated between (possibly) life-abbreviating end-of-life deci-
sions and having received multidisciplinary specialised palliative care
during the last three months of life. When palliative care had been used,
euthanasia was not less frequent (there was a statistically non-significant
excess of euthanasia in palliative care), and significantly more end of life
decisions with an explicitly life-abbreviating objective were made (odds
ratio 1.5, 95% CI 1.1 tot 2.1), (Van den Block et al. 2007, Chambaere
et al. 2010b). All these differences between palliative care and standard
care can, to a certain extent, be due to factors of patient selection such as
a heavier symptom burden in palliative care patients, but they prove at any
rate that in Belgium there is no contradiction between palliative care and
life-abbreviating practices. Palliative care in Belgium thus not only
replaces futile medical treatment, but also accepts that some patients con-
sider further palliative care as futile.
An attempt at calculation of the aggregate economic benefits of the
taking of life-abbreviating end-of-life decisions (ELD) was based on the
death-certificate-based epidemiological study of 1998 (Deliens et al.
2000), in which the physicians (anonymously) describing the cases also
estimated the amount of time irreversibly suffering survival was abbrevi-
ated by the end of life decision. Survival after all types of life-abbreviating
end of life decision in Flanders was reduced by a total of 126,000 patient-
days, on average seven days per patient (Bernheim 2002). Gielen et al.
(2010) reported a cost of €14,228 for the last 6 months of life. The cost in
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the last month was €6,298 for cancer patients and €4,311 for non cancer
patients. Assuming a distribution of patients as in Chambaere et al.
(2010b), with 65% of end of life decisions made in cancer patients, the
average cost in the last month is estimated at €5,599. Hence, the impact of
a reduction in life span of 7 days on the health care budget could be con-
servatively (assuming a constant cost in the last month) estimated at
€1,306 per patient. Since in about half of all ~100,000 deaths annual
deaths in Belgium an end of life decision supposedly avoiding futile treat-
ment is made, the annual savings on the basis of the 1998 epidemiological
data can be roughly estimated as €65,000,000.
MEDICAL FUTILITY: LEGAL, PROFESSIONAL

RULES AND GUIDELINES
Every hospital or district by law has its pluralistically composed ethical
committee dealing with specific problems. For general bioethical issues,
there is the Federal Advisory Committee for Bioethics, which is com-
posed of ethicists, lawyers and representatives of the organized religious
and philosophical constituencies, including secular humanism. Its report
to Parliament in 1998 was pivotal in bringing about the euthanasia
legislation.
There is no specific legislation dedicated to medical futility in Belgium.
However, indirectly the legislation concerning the mandatory insurance
on health care and benefits is pertinent Article 73, §1 of this law deter-
mines that in principle physicians have therapeutic freedom, but they must
refrain from futile or unnecessary expensive treatments supported by the
health insurance (www.riziv.fgov.be).
In the Medical Order’s professional code of conduct a few articles refer
to medical futility (without using the term). For instance, Article 36 and
49 Code Medical Conduct states; ‘a physician must avoid and may refuse
treatments which have no sufficient medical indication’. Also, in the con-
text of the end of life of the patient, Article 97 of the same Code says that
the physician must prevent therapeutic obstinacy.
Further, several Belgium institutions are competent to issue guidelines:
the Federal Control and Evaluation Commission on Euthanasia, the
Federal Advisory Committee on Bioethics, The Royal Academy of
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72 Chapter Three
Medicine, etc. None of the advisory bodies have elaborated specific ethi-
cal guidelines on medical futility. Nonetheless there is an advice recom-
mendation on “do not resuscitate” (DNR) orders from the Federal
Advisory Committee on Bioethics which indirectly deals with this topic.
Besides these federal advisory bodies, each hospital is obliged to have
a committee on medical ethics (The Law Concerning Hospitals 2008).
These committees advise on medical experimentation and on the ethical
aspects of hospital care, including medical futility. It is always possible
that a local committee on medical ethics establishes some ethical rules
on medical futility. The ethical rules issued by a local ethical committee
or from a federal advisory body are guidelines and are never legally
binding.
In principle physicians have a legally protected therapeutic freedom or
professional autonomy: they decide which means must be used to make a
diagnosis and treat the patient (The Law Concerning Healthcare Professions
1967). This freedom entails also the right to accept or to refuse the treat-
ment of a patient. An exception to this freedom is when a patient needs
urgent treatment (Article 422, Penal Code). Further, a physician can dis-
continue treating his patient, e.g. when the physician and the patient do
not trust each other anymore, on condition that the physician assures the
continuity of care by another physician (Art. 8 of the Law of 1967). Not
every act by a physician is a medical act. In order to be recognized as a
medical act and therefore protected by legislation, the act must be carried
out by a physician and preceded by the informed consent of the patient or
his legal representative. However, the act must have a preventive, diagnos-
tic or therapeutic goal, including palliative care (Art. 2 of the Law of 1967
and Art. 2 of the Law on Patient’s Rights of 2002). Hence, strictly speak-
ing, a physician who performs a futile treatment is not protected by the
legislation concerning the execution of medical acts, and could be prose-
cuted for assault and battery (Art. 418, Penal Code). Given the legal fact
that a physician must abstain from futile treatment, it is important to know
what is meant by futile treatment. First, it must be emphasized that medi-
cal futility is not limited to the end-of life context. In other circumstances
physicians may prescribe an examination, a treatment or a drug, e.g. to
reassure the patient or because the patient wants this, without any medical
indication. Prescribing an antibiotic for a benign common viral illness, for
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instance, will not have any effect and is futile (Baily 2011). However,
without any doubt, the most complex situation arises at the end of life
when conflicts between physician and the patient or his family concern
matters of life and death.
In accordance with American views (Obade 2011), Belgian legal
authors (Delbeke 2012 and Lemmens 2012) recently distinguished four
types of medical futility. First is Physiologic futility, when a treatment is
futile because it has no physiological benefit and is therefore ineffective
and useless. Prescribing an antibiotic for a viral illness or cardiopulmo-
nary resuscitation of a patient with end-stage myocardial dysfunction are
cases in point. This type of futility is based on objective evidence.
The second is Quantitative futility: the treatment has some potential
effect, but the probability of success is so low that the treatment is consid-
ered not to be reasonable. An example is the reanimation of old patients
with a severe irreversible chronic disease when the chance of success is
less than 5% (Delbeke 2012).
The third group is Economic futility: a treatment is futile when there is
some potential effect, but the treatment is considered too costly with
regard to the magnitude of this effect (Obade 2011). The goal of this
approach is cost control and justice in the allocation of resources.
Finally, the fourth is Qualitative futility: a treatment is futile when the
result which it can achieve is not sufficient (Leenen et al. 2007).
Qualitative futility is also described as disproportional futility. A treat-
ment is futile when there is no reasonable improvement of the state of
health of the patient or there is a disproportion between the means of the
treatment and the (poor) result of the treatment (Federal Advisory
Committee on Bioethics 2007). Disproportional futility comes close to
economic futility.
The overarching principle for these considerations is the obligation to
always do a cost-benefit analysis, where costs can be both economical and
clinical (e.g. side effects and other adverse consequences of treatment),
and benefits can be physiological, psychological or social. Cost-benefit
analysis can be considered as belonging to the obligatory means of clini-
cal practice.
Sadly, for the end of life, unlike in e.g. Spain (Gómez-Batiste et al.
2006, Paz-Ruiz et al. 2009), such studies are still lacking in Belgium.
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74 Chapter Three
MEDICAL FUTILITY: WHO DECIDES?

The question who decides arises in all four types of medical futility. The
ideal scenario which can also be found in the Law on Patient’s Rights is
of course the principle of shared decision making (Mitchell et al. 1993,
Delbeke 2012). According to Article 7 of the Patient’s Right Law, the
physician has a duty to inform the patient about the relevant aspects of his
illness and the treatment. In current situation, physicians inform the
patients (or their legal representatives) about their illness and suggest a
particular treatment or no treatment. Together they can choose one of the
options which both can fully support. When physician and patient disa-
gree about starting or continuing a treatment, the physician has the duty
to explain his medical arguments and try to convince the patient. If the
disagreement remains, someone will have to decide. A distinction must be
made depending on whether it is the patient or the physician who refuses
the treatment at the end of life. The Law on Patients’ Rights (Article 8),
determines that the patient has the absolute right to refuse a treatment. The
physician has the duty to respect the will of the patient not to be treated,
even if this hastens his death. Hence, when the informed patient refuses a
treatment, even life prolonging, at the end of his life, physicians must
respect this wish.
Alternatively, it is the physician who refuses to administer a (futile)
treatment. In principle, it is the physician who is considered to be the most
suitable agent to decide about futility on the basis of medical criteria.
Taking this into account, physiologic futility does not seem to cause many
legal or ethical problems. There is a broad consensus that a physician has
no obligation to perform a physiologically futile treatment (Nys 2005,
Tack and Balthazar 2007, and Federal Advisory Committee on Bioethics
2007). Even when a patient asks his physician to perform such a treat-
ment, the physician has the right, and strictly speaking even the obliga-
tion, to refuse a physiologically futile treatment. The physician has the
obligation to inform the patient about the reasons for this refusal. Hence,
it is the physician who decides about performing or not performing such
type of futile treatment. If the patient still wants it, he can always decide
to choose another physician. Normally, this other physician should also
refuse the ineffective treatment.
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The other types of futility raise more legal problems because they entail
a more subjective value judgment. In that case the decision should be a
joint one by physician and patient. But what happens in case of disagree-
ment? According to the majority of the Belgian legal doctrine, in case of
quantitative of qualitative futility the physician can never be forced to give
a treatment which he deems futile (Genicot 2010, Vansweevelt 2003). In
the only publicized judicial verdict on futility in Belgium, the court
decided that a physician has the right to abstain from reanimation of a
dehydrated, senile and mute patient with respiratory problems in the ter-
minal stage of Pick disease. Reanimation would only have maintained the
patient in a vegetative state. The court decided that the physician acted
humanely and did the right thing by deciding not to reanimate this patient
(Court Case 1991).
Also the Medical Order advises that a physician should stop or with-
hold a treatment when on medical grounds it is clear that there is no hope
for a reasonable improvement and life prolonging treatments will not
increase the comfort of the patient (Medical Order Advice 2003).
According to the Bioethics Federal Advisory Committee a physician can
never be coerced to start or continue a useless or futile treatment, which
includes quantitative and qualitative futility (Advice No. 41, on DNR
code, 2007). The only duty of the physician is to arrange for the continuity
of care by another physician.
However, some authors have recently disagreed with the mainstream
view. They defend the view that the patient should make the definitive
decision about a futile treatment because of the patient’s autonomy and
because the patient is the best qualified to judge what is an acceptable
quality of life (Delbeke 2012, Lemmens 2012).
Because it is difficult for the patient to coerce a physician to carry out
a treatment, some hospitals have established internal procedures to resolve
this kind of disputes. Most of the times, the hospital ethics committee
provides an ethical advice about the futile nature of the proposed treat-
ment. But this problem-resolution mechanism can be criticized because
the ethics committee is not an independent institution, but is composed in
majority of members of the hospital staff, who can be influenced by finan-
cial and professional considerations. In case of continuing disagreement
between physician and patient, ultimately the court can be addressed.
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76 Chapter Three
However, most courts, commentators and physicians agree that the court-
room is not the appropriate venue to settle such disputes (Bassel 2010).
Some (American) courts refused to settle futility disputes and stated to
lack the necessary expertise to make a decision about terminating or con-
tinuing life support ( Betancourt vs Trinitas Hospital 2009).
In Belgium, it appears that such disagreements between physicians and
their patients or their representatives are quite rare. There is almost no
jurisprudence in Belgium concerning end of life and futility disputes.
HOW ARE DECISIONS MADE IN CASES OF FUTILE CARE

AND WHO MAKES THEM?
Most Belgians professionals probably agree that the general principle of
“shared decision making” is to be followed (Löfmark & Nilstun 2002). In
the past, a generally rather paternalistic stance was recommended by the
Medical Disciplinary Board. For example, fatal diagnoses were as a rule
not to be communicated to patients, and if they were, only ‘with due pre-
cautions’. The broad principles of “full” information, informed consent
and joint decision making are now endorsed by both the health-care pro-
fessions and the general public. However, the practical implementation of
these lofty ideals is complicated. Empirical research has shown that
among patients there is a broad spectrum of preferences for the level of
information, ranging from “none at all” to “all” (Deschepper et al. 2008).
Also patient preferences for the degree of their own and their families’
involvement in decision making vary widely (Pardon et al. 2009, Pardon
et al. 2010). Moreover, these preferences change over time as the patient’s
situation evolves (Pardon et al. 2012a). Patient preferences are often not
met (Pardon et al. 2011, Pardon et al. 2012b). These findings support the
principle of individually tailored physician-patient interactions, along the
lines of “Patient-physician Information and Communication Covenants”
(ICC), as proposed several years ago (Bernheim 2001). The ICC proce-
dure aims to let the patient choose within the whole range of physician-
patient interactions, including the paternal-filial type. However, covenants
are always re-negotiable. It should be noted that, parental is to be distin-
guished from paternalistic. In the former case it is the patient who takes
the initiative to assume a filial position and who asks the doctor to be
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parental. This situation realises what is called “weak” paternalism.

A doctor-patient relationship is (strongly) paternalistic when it is the phy-
sician who takes the initiative to assume such a position. In principle the
agenda of an ICC must include a list of items as proposed by Winkler
et al. (2011).
Qualitative research suggests that oncologists may be under no illusion
as to the response rate of aggressive treatments in advanced cancer, but
feel that they cannot deny patients hope that may be futile. The authors
conclude: “the trend to greater use of chemotherapy at the end of life
could be explained by patients’ and physicians’ mutually reinforcing atti-
tudes of “not giving up” and by physicians’ broad interpretation of
patients’ quality of life, in which taking away patients’ hope by withhold-
ing treatment is considered harmful” (Buiting et al. 2011). Advance sys-
tematic end-of-life discussions between patient and physician in advanced
cancer patients have been shown to reduce aggressive and therefore often
futile treatment during the last phase of life (Mack et al. 2012). Also, early
supportive involvement of palliative care was proven to improve not only
quality of life, but even survival duration, thus ex absurdo proving that
some pre-terminal aggressive cancer treatment is futile (Earle et al. 2008).
THE LINK BETWEEN MEDICAL FUTILITY

AND EUTHANASIA IN BELGIUM
The issues of patient rights, palliative care and euthanasia have been and
still are strongly linked in the Belgian polity. This is made clear by the fact
that the three laws on patient rights, palliative care and euthanasia were
enacted together as a package by the federal Parliament in the spring of
2002. These laws are probably the most important changes in health care
in Belgium in the last few decades. In the Belgian model of comprehen-
sive end-of-life care, in conformity with the patients’ rights law, the
decision of what is futile is primarily the patient’s (or in case of incompe-
tence their parents or designated persons of confidence). This is imple-
mented even when a competent adult refuses a life-saving act for e.g.
religious reasons, as in the case of Jehovah’s witnesses (who however
cannot exercise the right of refusal of treatment for their child). However,
no physician is compelled to carry out a medically futile act. The same
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78 Chapter Three
principles apply in end of life situations: a patient may consider life-pro-

longing treatments as futile, as they can also consider the initiation or
continuation of palliative care as futile, and request euthanasia. Here
again, no physician is under any obligation to carry out euthanasia. If they
are conscientious objectors, they are morally and deontologically (as
enforced by the Belgian Medical Order) expected to refer the patient to a
permissive colleague. However, this obligation has not yet been legally
imposed.
CONCLUSION
Together with the Netherlands, Belgium has a strong record of research in
palliative care and end-of-life issues (Chambaere et al. 2011). Arguably,
taking all bioethical legislations together, it is the most liberal country: it is
a net exporter of organs for transplantation thanks to its “opting out” law
on organ procurement, its legislation on abortion and on assisted procrea-
tion and reproductive experimentation is very permissive, same-sex mar-
riage is legal, its development of palliative care is among the highest, and
it has legalized euthanasia. Its percentage of people in dialysis treatment for
end-stage renal disease is among the highest in the world, illustrating an
aversion to medical rationing and a toleration of what elsewhere is else-
where sometimes considered futile for economic reasons. Belgium’s
health-care system based on open access, free choice and fee-for-service is
more likely to promote overconsumption than economy. However, like all
advanced countries with an aging population Belgium faces a growing
problem of funding of social security and health care. Yet, there is a dearth
of studies addressing medical futility. It is as if the dominant paradigm of
empowerment of individual citizens to decide for themselves discourages
the performance of studies which are likely to suggest limitations on the
delivery of health care. The fraction of lifelong healthcare expenditure used
during the last phase of life would be expected to reduced by Belgium’s
high level of penetration of palliative care and to much lesser extent the
availability of euthanasia. This is probably true for the former, including
end-of-life decisions such as discontinuation of life-prolonging treatment
and palliative sedation, but doubtful for the euthanasia. Most probably,
euthanasia does not produce savings in health-care expenditure. This is
because most practitioners of euthanasia agree that -statistically- cancer
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patients who eventually die with euthanasia tend to live longer than their
counterparts dying in conventional care. The perspective of a good death at
the time of choosing seems to promote serenity and a concentration on
enjoyment of the last phase of life, which tends to prolong it. Also, some
patients are on record to have accepted life-prolonging treatments such as
brain irradiation only on the condition that they would be entitled to eutha-
nasia if they were to develop side effects which they could not tolerate.
Therefore, we see no sound foundation for the concern of opponents of
euthanasia that economic motives would in the future be invoked to nudge
or even coerce patients to request euthanasia.
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CHAPTER FOUR
THE CONCEPT OF MEDICAL

FUTILITY IN VENEZUELA
Gabriel d’Empaire
SUMMARY
The development of new technologies has improved the health, life

expectancy, and quality of life of many people around the world. At the
same time, the diversity of new treatments has created serious doubts
about the proper use of these new techniques. This is particularly true in
patients at the end of life, in whom serious doubts exist about how life-
sustaining interventions should either be applied or should be withheld
or withdrawn. The concept of futility has been helpful in clarifying
many of these situations. When a treatment is considered futile it is
easier to accept the decision of withholding or withdrawing it. However,
the use of the concept of futility in clinical practices has been limited
because a clear definition of futility has not been possible to achieve. In
this chapter, with a brief review of the healthcare system in Venezuela,
I describe ethical and legal aspects of medical futility and end-of-life
issues, how medical professionals deal with it, and how decisions are
made in the case of futile treatment.
85
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86 Chapter Four
INTRODUCTION
The development of new diagnostic and therapeutic methods has improved
the health, life expectancy, and quality of life of many people around the
world. These technological advances have given us the power to help
many people whose illnesses would be impossible to treat a few decades
ago. At the same time, these benefits have been partially offset by many
problems which have arisen as a consequence of these new technologies.
One of these negative consequences is the difficulty in making the right
decision about the right treatment that should be offered. The diversity of
new treatments has created serious doubts about the proper use and
accountability of these new techniques. This is particularly true in patients
at the end of life, in whom the same treatment and technique, usually used
to save lives, might just contribute to prolonging the process of dying, and
increase the suffering as well as medical costs.
Therefore, serious doubts exist about how life-sustaining interventions
should be applied, and when they should be withheld or withdrawn from
patients with low possibility of surviving, or from patients with some
chance of survival but with a limited quality of life, such as patients who
suffer from advanced forms of cancer, AIDS, or are in a vegetative state.
Withholding and withdrawing medical treatments represent one of the
most complex challenges we face in medical ethics. Who should be
treated? Who should not be treated? How long should a patient receive
treatment when he or she is not responding to the treatment properly?
Which criteria must be used to make these kinds of decisions? Who is
entitled to make a decision in such cases? All these questions must be
answered when we deal with a patient in terminal stages. The concept of
futility has been helpful in clarifying many of these situations. When a
treatment is considered futile, it is more convincing to make a decision to
withhold or withdraw the treatment. It should be noted that, for medical
professionals in Venezuela, rationing is easier to understand when we are
referring to futile treatments. However, application of the concept of futil-
ity in clinical practice has been limited, because the concept of medical
futility lacks a clear definition and consensus among medical profession-
als. Different definitions of futility have been proposed (Schneiderman
et al. 1990). A treatment is considered futile if it fails to achieve a specific
goal. In this regard, an intervention can be simultaneously futile in
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The Concept of Medical Futility in Venezuela 87
achieving one goal, and quite successful in attaining another goal

(Younger 1996). However, when it comes to the application of the pro-
posed definitions, there is evidence that physicians use futility at varying
degrees (Lantos et al. 1989; Curtis et al. 1995).
Reviewing the current discussion on medical futility shows that differ-
ent reasons limit the use of this concept. First, in medicine, life support
technology progresses faster than prognostic technology which makes it
very difficult to establish the futility of some treatments. Second, in some
cases it is difficult to establish the goal of the particular treatment. Third,
the concept of futility is influenced by the patient’s values, experience,
expectations, clinical context, evidence, and medical costs. Finally, the
meaning of the word “futility” is different in different languages and cul-
tures. In this sense, in our country, Venezuela, it is more common to use
the term “useless treatment” rather than “futile treatment”. It is because
the meaning of the word “futility” in Spanish is not the same as in English.
In Spanish the word “futility” (futilidad) refers to something of little
appreciation or little importance.
In the current situation due to the fast development of new treatments
and techniques patients are more exposed to futile treatments. Any attempt
to better define this concept would be helpful, and it would contribute to
reduce the suffering and cost associated with the futile use of these kinds
of treatments.
THE HEALTHCARE SYSTEM IN VENEZUELA

The Bolivarian Republic of Venezuela is a federal state organized into
23 federated states, a capital district, and the federal dependencies. The
actual population is 28,583,000 and people under the age of 15 and above
the age of 60 make up 32.1% and 7.3% of the total population, respectively.
In Venezuela, life expectancy at birth is 71 years for men and 78 years for
women. Gross national income per capita is 12,850 USD, total expenditure
on health per capita is 275 USD, and the probability of dying under age of
five (per 1,000 live births) is 18 (WHO 2011).
The healthcare system in Venezuela integrates public and private subsec-
tors. Some healthcare facilities are also managed by the regional govern-
ments, counties, NGOs, professional and religious entities, but they cover
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88 Chapter Four
small groups of the population. The public subsector is a free-of-charge

service. According to Article 84 of the Constitution, the health system in
Venezuela is “… decentralized and participatory in nature, integrated with
the social security system and governed by the principles of gratuity, uni-
versality, completeness, fairness, social integration ...” (Bolivarian Republic
of Venezuela Constitution 1999). The same Article of the Constitution
establishes the creation of a National Public Health System. The National
Law of Health to regulate this National Public Health System is being dis-
cussed at the National Assembly, and it will substitute the actual National
Law of Health of 1998 (National Law of Health 1998).
The Health Ministry of Popular Power created the National Plan of
Health (NPH) 2009–2013/2018 (Ministry of Popular Power for Health
2010). The main goal of the NPH is to warrant the quality of life and
health of the individual citizens, consolidating the National Public Health
System, by following the constitutional mandate, and having the Misión
Barrio Adentro (Inside the Neighborhood Mission) as the main axis of
medical care.
The Misión Barrio Adentro began in 2001 as an ambulatory level of an
integral healthcare strategy, to improve the efficacy of the first level of
healthcare. However, structural changes were made to the healthcare system,
and the Misión Barrio Adentro was formally created on May 22, 2003.
The main objective was to increase the coverage of basic health services
with quality and equity.
The Misión Barrio Adentro has different levels: Barrio Adentro I was
created as the primary level of healthcare. The main aspect of these cent-
ers is that they are located in the neighborhoods and in the marginalized
areas of the large cities, although some facilities were located in higher-
income areas. The second level of healthcare, Barrio Adentro II, focuses
on secondary care in three main areas: Integral Diagnostic Areas,
Rehabilitation Integral Areas, and High Technology Centers.
The third level of healthcare, Barrio Adentro III, provides care for those
cases which cannot be resolved at the two lower levels. This level is made
up of 220 hospitals with complex healthcare facilities which provide care
to referral patients from the first and second levels.
Barrio Adentro IV is in charge of the most complicated and specialized
medical and surgical needs.
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The private sector charges a fee for service, some institutions are for
profit, and others are non-profit health organizations. The cost of medical
care is usually covered by private insurance, and only in a few cases, the
payment is covered by the patient. Each person is free to decide if they
want to obtain personal insurance. Part of the medical costs of an insured
patient is paid by the employers. However, a significant part of the popula-
tion has no economic capacity to pay for insurance policies. In the past
few years, the number of people insured by the government has increased
(PROVEA 2010), and as a consequence the number of patients consulting
private hospitals has increased.
Currently, there is no data available to evaluate how the payment sys-
tem affects decision making about medical futility. The use of futile treat-
ments usually does not depend on the payment system. Obviously, in a
free-of-charge public healthcare system there is less pressure to use futile
treatments than in a private system. However, the medical indications are
made by medical doctors, and there is no strict control by the hospital’s
administration, either in the public or the private hospitals, regarding the
type of medical treatment.
MEDICAL FUTILITY AND END-OF-LIFE: WHO DECIDES

AND HOW?
The first relevant aspect that we have in Venezuela regarding ethics at the
end of life comes from Dr. Luis Razetti, a Venezuelan medical doctor born
in 1862. He was a pioneer in medical ethics in our country and in South
America. He wrote the first ethical code in medicine in Venezuela, and
also was the author of Razetti’s Oath which is still used at the Universidad
Central de Venezuela to confirm the commitment required for all medical
doctors who receive a medical degree from this University (Razetti 1928).
In this oath Dr. Razetti said: “My reverence for the life when I treat termi-
nal patients will not compete with my fundamental obligation to relieve
human suffering.” So, according to Dr. Razetti we can understand that to
treat human suffering is more important than the life itself (Aguiar-
Guevara 2001). Furthermore, it is important to highlight that our Medical
Code of Ethics (Medical Deontology Code 2004) establishes in Article 84
that “… to relieve suffering is a fundamental medical obligation and under
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90 Chapter Four
no circumstances the doctor may deliberately provoke the patient’s death

even if their families request it”. In other words active euthanasia is
expressly prohibited.
In our country, with the exception of active euthanasia, the manage-
ment of patients at the end of life has different approaches. In this regard,
there is not, as perhaps in many other countries, a clear ethical framework
in relation to the protocol to be followed in such cases. Physicians, the
health staff, patients, their families, and society in general face the issue
of the end of life with different criteria, depending on their values, reli-
gion, information, and expectations. In this sense, we can find extremes,
from those who advocate active euthanasia to those who, even in terminal
situations, do not accept any means to shorten the life, or any form of
limitation of treatments even when they might be futile. However, the
majority accept the limits of medical care, and when the patient is consid-
ered irrecoverable, measures are taken to respect the patient’s rights and
dignity, and to reduce the risk of using futile treatments.
A study conducted to evaluate physicians’ opinions about decisions at
the end of life revealed that 85% of the physicians agreed to withhold or
withdraw medical treatments in a terminal patient and just 3% of them
disagreed. The majority (85%) were opposed to the admission of these
terminal patients to intensive care units and 5% approved of the admission
of those patients. Ten percent of the respondents did not answer this ques-
tion. Sixty-four percent of the physicians refused to use medical treatments
which could prolong the life of a terminal patient. The majority (82%)
considered that, if the patients didn’t have the capacity, the decision had to
be made by the family members along with the physician and the critical
care unit staff. However, there still remained 14% of physicians who
thought that this kind of decision should exclude the family members.
Fifty percent of the physicians consulted would continue with all treat-
ments, even when they could be considered futile, if the patient or the
family members insisted on continuing the life-sustaining treatment. Of
them, 39% refused to continue futile treatments and preferred to refer the
patient to another doctor; 11% did not answer.
The study showed that the majority of respondents (57%) believed that cost
was an element to take into account when deciding about the limitation of
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therapeutic measures and 36% did not consider it an important factor in

decision making.
In that study, 94% of the physicians considered that all competent
patients had the right to know their medical situation and should participate
in any decisions about their treatments. Most doctors (97%) agreed that the
patients had the right to refuse receiving certain treatments. Of them, 77%
believed that physicians should not give treatments against the patient’s
will. Of the respondents, 83% believed that it was important to take into
account the opinion of other health team members when a decision to with-
hold or withdraw treatment had to be made. They also considered unanim-
ity important in this kind of decision (d’Empaire et al. 2002).
In another study to evaluate different aspects of withholding and withdraw-

ing medical treatment, we found that in 85.7% of the cases, the decision
was discussed with the patient’s family members. In 77.7% of these patients
the family actively participated. However, 7.49% of the family members,
after receiving the information, preferred not to participate in the decision and
accepted the physician’s proposal. In 14.29% of cases the family members
did not participate, and the decision was taken by the medical doctors. In this
study, 100% of the patients had no capacity to make their own decision and
none of them had a living will. In 34.92% of the patients, treatments were
withheld, and in 65.98% treatments were withdrawn. Treatment futility was
the reason for withholding or withdrawing treatments in 100% of the cases.
In this study, the cost of medical care was not considered a reason for the
decision making (d’Empaire et al. 2001).
These two studies reflect the ethical trend in end-of-life decision mak-
ing in our country. Although differences still exist, in most cases the deci-
sions are taken after long deliberation, in which healthcare providers
consider the patient’s diagnosis and prognosis, to ensure that the patient is
in the terminal stage. However, to reduce harm, the effectiveness of pos-
sible medical indications is discussed in order to avoid the use of futile
treatments, which could needlessly prolong the dying process, increasing
the patient’s suffering and medical costs. Finally, in order to respect the
principle of autonomy, as well as the patient’s dignity and rights, in most
cases the patient’s wishes (or the surrogate’s opinion when the patient has
no capacity) are taken into account in decision making.
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92 Chapter Four
MEDICAL FUTILITY: RELATED LEGISLATION

AND GUIDELINES
There are no specific laws, guidelines, professional codes, or protocols to
regulate medical futility in Venezuela. However, the Constitution and
other laws regulate different aspects regarding healthcare at the end of life
which can be applicable in the case of medical futility. The Constitution
of the Bolivarian Republic of Venezuela (Bolivarian Republic of Venezuela
Constitution 1999) was approved in 1999 by a popular referendum. It was
adopted in December 1999, and it replaced the previous Constitution of
1961. Different articles refer to the protection of human rights, the right
to life, the right to health, and the right to be informed. For example,
Article 19 reads:
“The State shall guarantee to every individual, in accordance with the pro-
gressive principle and without discrimination of any kind, not renouncea-
ble, indivisible and interdependent enjoyment and exercise of human
rights. Respect for and the guaranteeing of these rights is obligatory for the
organs of Public Power, in accordance with the Constitution, the human
rights treaties signed and ratified by the Republic and any laws developing
the same.”
Article 43 protects the right to life. It reads: “The right to life is inviolable.
No law shall provide for the death penalty and no authority shall apply the
same. The State shall protect the life of persons who are deprived of lib-
erty, serving in the armed forces or civilian services, or otherwise subject
to its authority.”
Articles 83, 84, and 85 recognize and guarantee the right to health as a
fundamental social right as part of the right to life. Article 83 says:
“Health is a fundamental social right and the responsibility of the State,

which shall guarantee it as part of the right to life. The State shall promote
and develop policies oriented toward improving the quality of life, common
welfare and access to services. All persons have the right to protection of
health, as well as the duty to participate actively in the furtherance and
protection of the same…”
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According to Article 84, “In order to guarantee the right to health, the
State creates, exercises guidance over and administers a national public
health system that crosses sector boundaries, and is decentralized and
participatory in nature, integrated with the social security system and gov-
erned by the principles of gratuity, universality, completeness, fairness,
social integration and solidarity.”
The Constitution also establishes informed consent. As Article 46
reads: “Everyone is entitled to respect for his or her physical, mental and
moral integrity, therefore: (3) No person shall be subjected without his or
her freely given consent to scientific experiments or medical or laboratory
examinations, except when such person’s life is in danger, or in any other
circumstances as may be detained by law.”
The National Law of Health of 1998 establishes the right of terminal
patients to refuse extraordinary treatments. According to Article 69
patients have the following rights:
• Respect for their dignity and privacy, and cannot be discriminated

against because of geographical, racial, social, sexual, economical,
ideological, political or religious reasons.
• To accept or refuse to participate, after receiving information, in
research projects.
• To receive information, in understandable terms, with regard to health
and treatment of their disease, in order to give informed consent to the
diagnostic and therapeutic options, unless epidemic risks of severe or
extreme urgency exist.
• To refuse extraordinary treatments addressed to prolong their life
when, according to the state of the art in medicine, they are in the
terminal stage.
It should be noted that the Law of Medicine (1982) considers no obliga-

tion for using measures to artificially sustain life in terminal patients and
also regulates the admission or stay of terminal patients in intensive care
units. Article 28 reads: “The doctor treating not recoverable patients has
no obligation to use extraordinary measures to maintain artificial life.
In these cases, if possible, hear the opinion of another or other medical
professionals. Regulations will develop the content of this provision.”
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94 Chapter Four
According to Article 29, “The admission and stay of patients in intensive

care units should be subject to strict evaluation, designed to prevent the
unjustified, useless and expensive use of these services in conditions in
which they are not needed or in case of care of patients irrecoverable at
the final stage of their illness.”
The Medical Deontology Code

The Medical Deontology Code, approved in October 2004 by the CXL
Venezuelan Medical Federation Assembly, has a level of law. Regarding
end-of-life decision making, this Code states in Article 77 that “The
patients with a terminal illness have the right to be informed of the truth of
their condition, if they want to know it. The physician must make the pre-
liminary assessment of these patients to determine the appropriate time to
provide the required information and has to be prepared to assist the patient
in case of unpredictable reactions.” Article 78 of this Code says: “Patients
in a terminal condition and who are mentally competent have the right to
participate in decisions about their illness, for which they should be prop-
erly informed about the available options, possible benefits or adverse
effects which could be related to them. The patient may refuse any diag-
nostic or therapeutic procedure and his or her decision must be respected.”
If the treatment is believed to be futile, according to this Code (Article 82),
terminally ill patients should not be subjected to measures derived from life
support technology, which only serve to prolong the agony but do not pre-
serve life.
Article 83 says:
“When a terminally ill patient is suffering from pain, the physician should
use analgesics in sufficient doses to relieve suffering if it is necessary for
the physician to carry out therapeutic measures to relieve pain. In those
cases where a gradual increase in the dose of strong painkillers can shorten
the life by depression of the center that regulates breathing, the physician
should give priority to the analgesic treatment as a primary effect wanted.”
Article 84 of this Code sets the primary obligation for physicians to

relieve human suffering. They cannot deliberately provoke the patient’s
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death, under any circumstances, even if he or his family requests it, nor
shall either cooperate or assist in the suicide of the patient by procuring a
drug in a lethal dose.
THE LINK BETWEEN MEDICAL FUTILITY AND EUTHANASIA

Although in Venezuela medical futility is applicable in medical practice,
active euthanasia is expressly prohibited. Therefore, it is not possible to
relate the concept of medical futility to active euthanasia.
For a patient in the terminal stage of illness, attempts to define the
effectiveness or futility of treatments are usually made. In this sense, our
laws clearly establish the terminal patient’s right to be informed of the
truth of their condition; the right to participate in decisions about their
illness; the right to be properly informed about the available options, pos-
sible benefits, or adverse effects which could be related to them; and the
right to refuse any diagnostic or therapeutic procedure which prolong their
life if according to the state of the art in medicine, the patient is in the
terminal stage. It should be noted that the Penal Code of Venezuela pro-
hibits the assistance of suicide. Some proposals have been made to include
articles to permit euthanasia, but those articles have not been approved.
The law of medicine also establishes no obligation for using measures
to artificially sustain life if there is no possibility of recovery. In Venezuela,
in order to prevent the use of scarce resources and health services, in case
of futile treatment and irrecoverable patients, there is a strict evaluation of
admissions or stays in intensive care units to see if they are unjustified,
useless, and expensive. In other words, this law prohibits the use of futile
treatments.
CONCLUSION
Despite the advances in medical sciences, our capacity to sustain life with
a reasonable quality of life in patients who suffer from irrecoverable ill-
nesses is limited. In this regard, any attempt to better define the concept
of medical futility in clinical practice, as well as advances in improving
our capacity to establish the patient’s prognosis and the guarantee to
respect the patient’s right to be informed and their right to make their own
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96 Chapter Four
decision based on their values, will improve our quality of healthcare,

reduce the patients’ suffering, and reduce medical costs. In clinical prac-
tice in Venezuela, the tendency is to prevent the use of futile treatments at
the end of life. This tendency is clearly expressed in the studies mentioned
earlier in this article (d’Empaire et al. 2002), where 85% of the physicians
agreed with withholding or withdrawing medical treatment if it is futile in
terminal patients, and only 3% of them disagreed with this procedure. The
majority (85%) were opposed to the admission of these terminal patients
to intensive care units; 64% of the physicians refused to use medical treat-
ments which could prolong the life of terminal patients. However, 50% of
the physicians consulted would continue with all treatments, even when
they could be considered futile, if the patient or the family members
insisted on continuing the treatment.
REFERENCES
Aguiar-Guevara R. 2001. Tratado de Derecho Médico. Caracas: Legis Editores,
p. 625.
Bolivarian Republic of Venezuela Constitution 1999. Available at: http://axiso-
flogic.com/artman/publish/Article_29889.shtml [Accessed May 15, 2012].
Curtis JR, Park DR, Krone MR et al. 1995. Use of the medical futility rationale
in do not attempt resuscitation orders. JAMA 273: 124–128.
d’Empaire G, Parada MI, d’Empaire MA, and Encinoso J. 2001. Limitación de
medidas terapéuticas en pacientes hospitalizados en una unidad de cuidados
intensivos. Clínica Médica HCC 6: 143–146.
d’Empaire G, Parada MI, d’Empaire MA, and Encinoso J. 2002. Limitación de
medidas terapéuticas: Opinión de médicos de diversas especialidades.
Clínica Médica HCC 7: 29–36.
Lantos JD, Singer PA, Walker PM et al. 1989. The illusion of futility in clinical
practice. American Journal of Medicine 87: 81–84.
Law of Medicine. Available at: http://legal.com.ve/leyes/C106.pdf [Accessed
May 15, 2012].
Medical Deontology Code of 2004. Available at: http://www.saber.ula.ve/
bitstream/123456789/32938/8/5ta_sesion_codigoetica.pdf.
Ministry of Popular Power for Health. 2010. Memoria 2010. Available at: http://
www.ovsalud.org/doc/Memoria_2010.pdf [Accessed June 20, 2011].
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National Law of Health 1998. Available at: http://www.derechos.org.ve/pw/

wpcontent/uploads/ley_organica_salud.pdf [Accessed May 15, 2012].
PROVEA. 2010. Informe Anual. Available at: http://www.derechos.org.ve/
informes-anuales/informe-anual-2010/.
Razetti L. 1928. Razetti’s Oath. Available at: http://antonio7635.wordpress.
com/2008/06/09/juramento-de-razetti/ [Accessed May 15, 2012].
Schneiderman L, Jecker NS, and Jonsen AR. 1990. Medical futility: Its meaning
World Health Organization. 2011. Venezuela: Health profile. Available at: http://
www.who.int/gho/countries/ven.pdf [Accessed June 20, 2011].
Younger S. 1996. Medical futility. In: KA Koch, ed. Medical Ethics. Critical
Care Clinics. Philadelphia: WB Saunders Company, Vol. 12, pp. 165–178.
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CHAPTER FIVE
MEDICAL FUTILITY IN THE RUSSIAN FEDERATION
Olga I Kubar, Galina L Mikirtichian

and Marina I Petrova
SUMMARY
In the Russian Federation the term “futile medicine” is absent from the
vocabulary of medical professionals, and therefore medical futility is
considered in the context of palliative medicine. The entire history of
medicine in Russia, starting from the nineteenth century, shows that the
work of Russian physicians and their practice has been focused on
relieving terminal illness, providing merciful care and maintaining, to
the maximum extent possible, the quality of the patient’s life with regard
to any stage of a terminal illness. Since the end of the twentieth century,
there have been positive results in the development of a regulatory and
administrative framework for palliative care in Russia. One of the posi-
tive results is the recognition of the importance of ethical and legal regu-
lation in palliative medicine with regard to human rights, the value of
human life, the protection of human rights and freedoms. Further devel-
opment of ethics and law in the field of palliative medicine in Russia can
be facilitated by legislative initiatives in the sphere of human rights,
continuous work on adaptation and implementation of international
rules, regulations and administrative procedures for providing medical
care in the case of medical futility.
99
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100 Chapter Five
THE HEALTHCARE SYSTEM IN THE RUSSIAN FEDERATION

The healthcare system of the Russian Federation is a complex of federal
health agencies, the executive board, executive agencies, local authorities
and their subordinate organizations, as well as institutions of private medi-
cal practice and private pharmaceutical activity. Their responsibility is to
protect and strengthen the health of citizens. All structural elements of the
system are enshrined in the relevant legislation. In accordance with the
Fundamentals of the Russian Federation Legislation on Citizens’ Health
Protection (Fundamentals 2011), and depending on the form of property
and funding sources, there are three healthcare systems in the Russian
Federation: state, municipal and private medical system.
The state healthcare system includes federal agencies of executive
power, the executive authorities of the Russian Federation, institutions of
the Russian Academy of Medical Sciences, as well as state-owned institu-
tions for preventive medicine, research, education, pharmacy and public
health.
The municipal healthcare system comprises local government bodies
authorized to exercise control in medical and pharmaceutical organiza-
tions owned by municipalities.
The private healthcare system includes medical and pharmaceutical
institutions whose property is owned by the private sector, as well as pro-
fessionals engaged in private medical practice and private pharmaceutical
activities.
Institutions in the healthcare system in Russia provide various kinds of
medical care. There are several classifications of medical care: primary
healthcare, emergency and specialized medical care, and medical and
social assistance to citizens suffering from social diseases and individuals
suffering from diseases that present a danger to others. The most high-
volume type of care is primary healthcare (PHC), which is available free
of charge for every citizen.
Depending on the stage of rendering medical care there are different
levels of healthcare delivery: first, secondary and tertiary healthcare.
According to the Russian Federation Healthcare Ministry Order in 2005,
there are different district, city, regional and republican hospitals as well as
specialized hospitals for certain diseases such as cancer, geriatric, psycho-
neurological and psychiatric hospitals for both children and adult patients.
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Medical Futility in the Russian Federation 101
The nomenclature includes also nursing homes, hospices, as well as

dispensaries of different profiles. District and city outpatient clinics pro-
vide medical services to children and adults. There are also some special
healthcare institutions dealing with specific issues such as natural disaster
medicine, licensing medical and pharmacy practice, quality control and
certification of medicinal products, as well as the bureau of medical sta-
tistics and forensic examination, control and analytical laboratories, mili-
tary medical commissions and an agency for the supervision of consumer
rights protection and human welfare.
In Russia, the health insurance system has two basic services: compul-
sory health insurance and voluntary health insurance. Compulsory health
insurance is provided by the state for social protection of citizens’ inter-
ests in healthcare and covers healthcare costs. Compensation comes from
resources accumulated in the compulsory health insurance funds (at the
territorial and federal level). Voluntary health insurance provides insur-
ance in case of sickness and offers an opportunity for full or partial
reimbursement of medical expenses and loss of income during the illness
in addition to the healthcare system or compulsory health insurance.
The compulsory health insurance fund is formed from employers’ insur-
ance premiums, as well as payments from the budget for the non-working
population. This insurance guarantees medical care, in the extent and on
the conditions stated in the compulsory health insurance programs. This
service is provided to all citizens of the Russian Federation, irrespective
of sex, age, place of residence and social status. Among compulsory
health insurance programs is the territorial program defining the guaran-
teed scope of free medical care funded by compulsory health
insurance.
PALLIATIVE CARE MEDICINE IN RUSSIA

In Russia, all ethical, social, legal and medical aspects associated with
end-of-life treatment are expressed through the concept of palliative medi-
cine. These are the main characteristics of the Russian healthcare system
that form the background for the development, structure and practice of
palliative medicine in the country. Palliative medicine is presented in this
review because the term “futile medicine” is absent from the vocabulary
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102 Chapter Five
of the professional medical community, clinical as well as scientific, and

therefore medical futility is considered in terms of palliative medicine.
Further development of palliative medicine in Russia may help to intro-
duce more precise wording for terms and concepts used by the interna-
tional medical community so that we can speak the same language and
discuss patient care.
Palliative medicine in Russia originated in the system of cancer care,
and its concepts go back to the beginning of the twentieth century. In
1903, at the initiative of Prof. A.L. Levshina, the Morozov Institute for
Tumor Treatment opened at the Medical Faculty of Moscow State
University (now I.M. Sechenov First Moscow State Medical University).
The Morozov Institute had a hospital for 130 inpatients, experimental and
chemical laboratories, a radiology department and a laboratory for study-
ing the effect of radioactive substances on body tissues.
In 1911, in St. Petersburg, a famous merchant Yeliseev initiated the
foundation of the Yeleninskaya Hospital for 90 patients, for “poor women
of Christian faiths suffering from malignant tumors”. In 1908, the All-
Russia Society for Cancer Control was formed in St. Petersburg. The
Society opened a hospital for free treatment of cancer patients with X-rays
and radium, and in 1914 convened the First All-Russia Congress on
Cancer in St. Petersburg.
Later in the twentieth century, in Russia, like in other countries, the
problems of cancer treatment and prevention became an issue of state
concern, as proclaimed at a special meeting of the People’s Commissariat
for Healthcare of the Russian Soviet Federative Socialist Republic in
1925. From 1989 to 1991 the development of palliative care for cancer
patients suffering from chronic pain was started. The infrastructure began
to form, including pain-relief units within cancer research institutes and
cancer clinics. In several cities, hospices were set up in analogy with those
in Great Britain. The first Russian hospice opened in St. Petersburg in the
autumn of 1990 due to the efforts of St. Petersburg psychiatrist Andrey
Gnezdilov and British journalist Victor Zorza. Great support was rendered
by British physicians and nurses who held a number of courses on pallia-
tive care which were extremely helpful. Currently, this hospice is a state
charitable institution providing medical, psychosocial and spiritual care
for terminal cancer patients, as well as family support. In 1994, the first
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Moscow hospice began work. It is worth mentioning that all hospices in

Russia get financial and administrative support from the government
(Gnezdilov et al. 1994).
A hospice is defined as a medical institution providing palliative care
to patients with advanced terminal cancer at the inpatient unit or at home,
as well as offering psychological support to the patient’s family during the
illness and after the patient’s death.
Currently, Russia has a network of inpatient and outpatient clinics for
palliative care. Hospices and palliative medicine departments within
multi-profile hospitals are mostly state owned and the services are free of
charge. Besides, there are also private nursing homes, some of which pro-
vide care for elderly cancer patients. Cancer patients may receive ambula-
tory treatment at pain relief wards. There are also home care teams
visiting cancer patients at their homes. Palliative care is rendered not only
to cancer patients, but also to patients suffering from other terminal dis-
eases such as AIDS. Alongside hospice care for adults, there is also pedi-
atric hospice care. Hospices as well as the palliative care departments
within multi-profile hospitals are financed by the state.
The practice of palliative medicine in the Russian Federation is regu-
lated by a number of administrative documents, particularly the
Recommendations for the Organization of Palliative Care developed and
approved at the national level, and the Hospice Statute. The first legal
document regulating palliative medicine was approved in 1992, which has
stimulated the setting up of hospices, nursing homes and wards. Besides,
in 1995, the status of the geriatric medical specialty was introduced. In
1996, palliative care in Russia was included in Index Medicus, termed
“palliative care” in addition to the existing definitions of “terminal care”
(1968) and “hospice” (1980). However, meanwhile, palliative medicine as
a specialty is not included in the Nomenclature of Medical Specialties. All
these initiatives were carried out under the auspices of the Ministry of
Health of the Russian Federation.
Departments of palliative medicine are set up within cancer clinics to
provide palliative care and to create conditions that ensure an optimal
quality of life for cancer patients. The Program for Strategic Development
of Hospice and Palliative Medicine in the Russian Federation is setting
clear objectives, tasks and time frames.
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104 Chapter Five
The problem of opioid analgesic availability for pain relief in cancer

patients should also be a subject of legislative regulation. Incurable cancer
patients fall into the category of citizens who are entitled to receive a set
of social services.
Another important development is the public movement supporting
palliative medicine. In 1993, the Expert Council for the Organization of
Palliative Care for Cancer Patients was established, followed by the crea-
tion of the Palliative Medicine and Rehabilitation of Patients Fund in
1995, which stimulated the All-Russia public movement “Medicine for
Quality of Life” in 2002. The Fund’s resources were used to organize
conferences and provide education in dealing with patients for whom
medical treatment is futile. In 1996, the Journal of Palliative Care and
Rehabilitation was published. In 2007, an inter-regional public organiza-
tion called the Association for Palliative Medicine was established in
St. Petersburg.
International cooperation plays a significant role in the development of
palliative care in the Russian Federation. At present, we have continuous
cooperation and interaction with a number of international organizations
(the European Association for Palliative Care (EAPC) and the International
Association for Hospice and Palliative Care (IAHPC)). Within the frame-
work of international cooperation, annual events, such as the celebration
World Hospice and Palliative Care Day, are held.
Education in the field of palliative medicine is following. Although the
specialty palliative medicine is not included in the Nomenclature of
Medical Specialties of the Russian Federation Ministry of Health and
Social Development, courses on palliative medicine and palliative oncol-
ogy have been developed and held within the framework of postgraduate
medical education. An essential contribution to postgraduate training in
this field was scientific monographs and guidelines by Russian authors
(Modnikov et al. 2004; Novikov et al. 2002–2003, 2004; Novikov
2000–2006).
The courses are based on the Program of Postgraduate Professional
Education on Palliative Care in Oncology approved by the Russian
Federation Health Ministry in 2000. The priorities of the courses are
teaching, methodical and research work.
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ETHICS OF END-OF-LIFE CARE IN RUSSIA

Palliative care for dying patients rests on the traditions of Russian philo-
sophical and religious thought, on classical medical ethics, on principles
and rules of bioethics and on extensive practical experience in medicine.
Based on this approach, physicians should respect the patient’s integrity,
act in the patient’s best interests and approach each patient individually
considering the patient’s condition, the patient’s preferences, as well as
therapeutic goals and benefit from each particular treatment and the side
effects. This means that the physician treats the patient within reasonable
limits and is aware of the natural processes of life and death. There are no
objective criteria to stop the special treatment and each patient is unique.
However, when treating a patient with terminal cancer it is important to see
when would be proper to change to comprehensive palliative treatment,
which means medical, psychosocial and spiritual care (Ekkert 2006).
Ethical principles form an essential element of the physician’s practice.
Symptom control does not aim at curing the terminal cancer patient; it
aims at relieving or eliminating symptoms, minimizing the patient’s suf-
fering and maximizing the quality of life. A caring attitude helps the
patient to go through the psychological experience and stages of coping
with terminal illness to the last stage when the individual begins to come
to terms with her/his mortality. This may be achieved in the atmosphere
of a trustful and honest relationship between the patient and the medical
professionals.
Bad news about the terminal illness and prognosis can result in depres-
sion in the patient. Therefore, for a long time the dominant deontological
position was to conceal the truth from the patient and not to tell him/her
about the possible fatal outcome. However, many patients with terminal
cancer are aware of their illness or receive traumatic information from
somewhere else. Deficient verbal information in combination with the
unspoken oppressive sorrows of relatives and avoidant behavior of the
medical staff negatively affected the patient’s condition, and undermined
the trust in medical professionals and medicine in general, which hindered
effective treatment. Therefore, now the attitude is different. The patients
receive truthful information, and the problem is not “to tell or not to tell”,
but how to tell and how to choose appropriate psychological approaches
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106 Chapter Five
to breaking bad news in each particular case. The patient has the right to
get adequate and reliable information about the illness, suggested treat-
ment and the likely prognosis, as well as emotional support on the way
towards accepting the approaching death. The patient has the right to
choose how to use the remaining time of his/her life (to arrange his/her
personal and family affairs, to change his/her way of life or to refuse both
the information about his/her conditions and the proposed treatment, etc.).
Informed voluntary consent is a rule in the relationship with the patient
and/or his legal representatives, as stipulated by the Russian legislation on
healthcare. Medical professionals should not stop therapy at the bedside of
the dying patient until the patient voluntarily expresses his/her competent
informed decision about the termination of active medical treatment and
transition to palliative care or refuse the therapy altogether. The change in
treatment procedure without the patient’s consent may happen only if the
patient is in a coma, in a persistent vegetative state or has mental deteriora-
tion that does not allow him/her to make an informed decision.
In Russian society, the family plays an important role in providing care
for the chronically ill, which reduces the load on the organization of medi-
cal and social assistance. In the context of palliative care, family support
is an integral part of caring for the dying patient. However, the family
should get adequate psychological and social support, so that the patient
and his/her relatives can live as fully as possible. Communication with
family members aims at helping the family to cope with the impending
death and bereavement.
In palliative medicine, physicians play an important role in the patient-
centered team. The patient’s quality of life in many respects depends on
their professional qualities, communication skills and empathy. The phy-
sician’s work in palliative medicine is a special type of medical activity.
Physicians are facing the pain, suffering and death of their patients, and
often are in situations where they have to make adequate decisions within
a limited time. No wonder that burnout syndrome is a serious problem for
the physicians and nurses working in this field.
The importance of nursing care cannot be overstressed. The concept of
a nurse as a “sister of mercy” has been accepted as a professional standard
of behavior in Russia since the days of famous Russian physician Nikolai
Pirogov (19th c.) (Ivanjushkin and Hetagurova 2003).
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In our days the Russian Federation Code of Ethics for Nurses states
ethical rules guiding behavior towards a dying patient. This Code states,
in particular: “The nurse must respect the right of the dying patient to a
kind, empathic attitude and a dignified death.” It also says:
“The nurse should possess the necessary knowledge and skills in palliative
care, which would allow them to provide comfort and relief for the dying
patient. The essential tasks of a medical nurse is to prevent or relieve suf-
ferings associated with the process of dying and to give the dying patient
and his/her family psychological support. … Euthanasia, i.e. intentional
action for terminating the patient’s life, even at the patient’s request, is
immoral and unacceptable.”
MEDICAL FUTILITY AND EUTHANASIA

Palliative care advocates the patient’s right to a “good death”, and the
distinction between passive and active euthanasia and natural death can be
very vague in the context of palliative care (Zil’ber 1998, 2002).
Nevertheless, the philosophy of palliative medicine states that the deliber-
ate termination of a patient’s life is never necessary. In the case of futile
treatment, palliative care is recognized as an alternative to euthanasia for
terminally ill patients experiencing suffering. Doctors and nurses should
understand that their duty is to sustain life, and not to promote the idea to
patients of killing themselves or hastening the onset of death.
It should be especially mentioned that in matters of life and death, eth-
ics, law and religion are closely intertwined and interrelated in Russian
society. Today there is every possibility for the church institutions to pro-
mote their viewpoints on a wide range of purely secular issues — from
politics, culture, science and education to ethnic and international rela-
tions (Jubilee Bishops’ Council of the Russian Orthodox Church 2002).
It is well known that euthanasia is condemned by traditional religion
and morality. The Ecclesiastical and Public Council for Biomedical Ethics
(1999) states that “the Orthodox clergy, scientists and physicians consider
euthanasia as an action of killing a terminally ill patient and also consider
euthanasia as a special form of homicide (by doctors), or as a suicide (at
the request of the patient), or as a combination of both” (Silujanova 2001).
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108 Chapter Five
The Bases of the Social Concept of the Russian Orthodox Church —

the document adopted at the Jubilee Bishops’ Council (2000) in the chap-
ter “Challenges of Bioethics” — considers the problem of euthanasia, the
“right to die”, in terms of Christian doctrine:
“... the Church, while remaining faithful to God’s commandment ‘thou

shalt not kill’ (Ex. 20:13), cannot recognize as morally acceptable the
widely-spread attempt to legalise the so-called euthanasia, that is, the pur-
poseful destruction of hopelessly ill patients (also by their own will). The
request of a patient to speed up his death is sometimes associated with
depression preventing him from assessing his condition correctly. Legalised
euthanasia would lead to the devaluation of the dignity and the corruption
of the professional duty of the doctor called to preserve rather than end life.
‘The right to death’ can easily become a threat to the life of a patient whose
treatment is hampered by lack of funds. Therefore, euthanasia is considered
a form of homicide or suicide, depending on whether a patient participates
in it or not. Both a purposeful suicide and assistance in it are viewed as
grave sins.”
In general, these principles of moral behavior by medical professionals

are not new; they have been followed as generally accepted standards of
medical practice, which are reflected in many literary and art works by
Russian authors.
END-OF-LIFE: RELATED LEGISLATION AND REGULATIONS

As mentioned earlier, in Russia the issue of medical futility has been dealt
in the context of end-of-life palliative medicine. Legislative regulation of
issues related to end-of-life issues are an essential component in terms
of respect for human rights and interests and human dignity at all stages
of life.
According to the Constitution of the Russian Federation, “Man, his
rights and freedoms shall be the supreme value.” The Constitution deter-
mines the full range of civil rights and freedoms. “The Russian Federation
recognizes and guarantees the rights and freedoms of citizens according
to the universally recognized principles and norms of international law
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and according to the present Constitution” (Article 17, Clause 1);

“Fundamental human rights and freedoms are inalienable and shall be
enjoyed by everyone from the day of birth” (Chapter 2, Article 17,
Clause 2). According to Article 20, “Everyone shall have the right to life.”
Article 21, Clause 1 states: “Human dignity shall be protected by the
State. Nothing may serve as a basis for its derogation.” Article 21, Clause
2 reads: “No one shall be subject to torture, violence or other cruel or
humiliating treatment or punishment. No one may be subject to medical,
scientific and other experiments without voluntary consent.” According to
Article 22, “Everyone shall have the right to freedom and personal immu-
nity.” Article 23, Clause 1 states: “Everyone shall have the right to the
inviolability of private life, personal and family secrets, the protection of
one’s honour and good name.” Article 24 guarantees confidentiality: “The
collection, keeping, use and dissemination of information about the pri-
vate life of a person shall not be allowed without his or her consent”
(Clause 1). “The bodies of state authority and local self-government, their
officials shall ensure for everyone the possibility of acquainting them-
selves with the documents and materials directly affecting his or her rights
and freedoms, unless otherwise provided for by law” (Clause 2).
In terms of decision making, Articles 5, 6, 13, 20 and 22 of the
Fundamentals of the Russian Federation Legislation on Citizens’ Health
Protection (2011) describe regulations of the general character and estab-
lish the key requirements for the procedure of decision making on the
nature and extent of treatment of the patient (including the dying patient).
To maintain the priority of the patient’s best interests by observing ethi-
cal and moral principles, Article 6 of the Fundamentals states that in seek-
ing and receiving medical treatment the patient has the right to respectful
and considerate care by medical staff, and for his/her condition and also
his/her cultural and religious traditions to be considered whenever possi-
ble. Accordingly, patients have the right to choose their physician, includ-
ing the family and attending physician and healthcare facility, in
compliance with the compulsory or voluntary health insurance contract.
They also have the right to access to consultation with other medical spe-
cialists, access to pain relief associated with the disease and/or medical
intervention by available means (the latter is of extreme importance in the
case of medical futility), and the right to see a lawyer or other legal
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110 Chapter Five
representatives to defend his/her rights, as well as a priest. It says that the

hospital is responsible for providing the conditions for religious practices,
including the provision of a separate room if it does not violate the inter-
nal rules of the hospital.
Article 6 also stipulates that medical institutions should create condi-
tions for the patient’s relatives to visit him/her and stay with the patient
considering his/her condition. Article 22 of the Fundamentals enshrines
the right of citizens to obtain information about their health. Every citizen
has the right to receive information about his/her health explained in an
accessible form, including information about examination results, the
presence of the disease, diagnosis and prognosis, treatment options, asso-
ciated risks, possible options of medical interventions and their impact on
the outcome of therapy. Considering cases of patients who are legally
acknowledged incapable, the Article stipulates that their legal representa-
tives (appointed legal representatives, attending physician, the head of the
department of medical and preventive treatment or other professionals
directly involved in the examination and treatment) can make the deci-
sion. Since the information about diagnosis, prognosis and treatment
prospects may have serious psychological and moral effects, Article 22
states also that health information cannot be enforced upon the patient
against his/her will. In cases of poor prognosis of the disease, information
should be delivered in a delicate way to the patient and his/her family
(spouse, children, adoptees, adoptive parents, siblings, grandchildren,
grandparents), if the patient has no objection to telling them about it, and/
or if he/she has not appointed a person to whom this information should
be delivered.
In compliance with Article 20, the necessary precondition for a medical
intervention is the citizen’s (or his/her legal representative’s) voluntary
informed consent based on information given by the medical professional
in a clear and accessible form about treatment options, associated risks,
possible options of medical interventions and their impact on the outcome
of therapy. If patients are recognized to be incapable, according to the
legal procedure, to give their free and voluntary consent to medical inter-
vention, it should be obtained from their legal representatives informed as
stated in Article 20. In the absence of legal representatives, the medical
council can make the decision about a medical intervention; if it is
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impossible to call the council, then the attending physician (physician on

call) makes the decision with subsequent notification to the officials of the
medical institution and legal representatives. The same article (Article 20)
of the Fundamentals describes also essential legal situations defining the
possibility and conditions to refuse a medical intervention. Accordingly,
the patient or his/her legal representative has the right to refuse a medical
intervention or require it to stop. In the case of refusal, the physician is
obliged to explain in an accessible form all the possible consequences of
renouncing medical intervention to the patient. If the patient still wants to
refuse the treatment, his renunciation should be documented in writing
and signed by the patient (or his/her legal representative) and the physi-
cian. However, if one of the parents or other legal representative of a
patient specified in Part 2 of this Article, or a legal representative of a
patient recognized as incapable according to the legal procedure, refuses
life-saving medical intervention, the medical organization has the right to
go to court to protect the patient’s interests.
The Law on the Fundamentals of the Citizens’ Health Protection in the
Russian Federation shows the importance of decisions about the necessity
and ways of providing medical care to dying patients, and the procedure
is as follows: first, the physician makes a diagnosis and informs the
patient (or his/her legal representative) about the best possible medical
care for the particular patient in this particular situation; the patient (or
his/her legal representative) makes his/her decision either to accept the
doctor’s advice or to act otherwise. However, it should also be noted that
if the patient and his/her legal representative makes a decision that disa-
grees with the physician’s opinion (i.e. evidence-based decision), the
physician should explain the negative consequences of the decision.
Legislative norms regulating the procedure of obtaining informed con-
sent and the confidentiality issue in special situations are reflected in
several federal laws such as the Psychiatric Assistance and Rights of
Patients (1992), On Transplantation of Human Organs and Tissues (1992),
Blood and Blood Components Donation (1993), Prevention of Spreading
of Disease Caused by Human Immunodeficiency Virus (HIV-Infection) in
the Russian Federation (1995), Immunoprophylaxis of Infectious Diseases
(1997), and other regulative documents regulating specific issues regard-
ing medical or social assistance.
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112 Chapter Five
From the viewpoint of the ethical component in the legislation of the

Russian Federation, such a key element as confidentiality of information
obtained from the patient and about the patient in the course of his/her
examination and treatment is worth mentioning. Confidentiality is guaran-
teed by the Law of the Fundamentals of the Citizens’ Health Protection in
the Russian Federation (Article 13) and the aforementioned Article 23 of
the Russian Federation Constitution.
There are also general regulations that guarantee the protection of per-
sonal data contained in the Federal Law of Information, Information
Technologies and Protection of Information 2006 and the Federal Law of
Personal Data 2006.
Therefore, the Russian Federation legislation proclaims among the
most important civil rights the right to life as the first fundamental natural
right of Man, without which all other rights lose their meaning, because
the dead do not need any rights (Matuzov 1998).
In the legislation of the Russian Federation there is no “right to die”;
the state may only attest and legally certify death (in a special standard
form — the death certificate), but has no right to allow or prohibit the
person to die or kill oneself.
According to the law, homicide and incitement to suicide are crimes
(Criminal Code of the Russian Federation, Articles 105 and 110). Besides,
any attempt to assist a suicide, even if in mercy, may be considered only
as an attenuating circumstance mitigating the punishment (Lebedev
2002). Besides, mercy killing (with or without the person’s request) in
medicine is prohibited in the Russian Federation (Article 45 of the
Fundamentals). Therefore, currently, the law forbids euthanasia in Russia.
Medical professionals are not allowed to perform euthanasia, i.e. to
respond to the patient’s request for hastened death by any actions (inac-
tions) or any ways and means including the termination of life-sustaining
treatment. The criminal law assumes that human life must be protected
both during life and in the process of birth and death.
The definition of death has been described in Article 9 of the Federal
Law of Transplantation of Human Organs and Tissues (1992); death is
defined when brain activity ceases irreversibly (brain death), which is
stated according to the procedure approved by the Ministry of Health of
the Russian Federation.
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Order No. 460, December 20, 2001, by the Russian Federation Ministry
of Health approved the Guidelines for the Declaration of Death Based on
Brain Criteria. In conformity with the Guidelines, the declaration of death
implies a special procedure including the list of compulsory clinical crite-
ria necessary for the declaration of brain death. Only after the protocol has
certified brain death, may life-sustaining support be withdrawn.
Considering the ethical priority of the legal regulation of the medical
futility issue in the development of the relevant section of the medical law
in the Russian Federation, a number of international documents have been
taken into account. Among those are the Nuremberg Code (1947), the
Declaration of Helsinki (1964) with subsequent revisions and amend-
ments, the Declaration of Alma-Ata (1978), the Declaration of Lisbon on
the Rights of the Patient (1981), EC Recommendations for the EU
Member States on the Organisation of Palliative Care (2003), the Belgrade
Agreement (2005), the Declaration of Venice (2006), the Budapest
Commitments at the EAPC Budapest Congress (2007), and the World
Cancer Declaration (2008). These documents have largely contributed to
the regulation of this issue in Russia.
In the case of providing care when treatment is considered futile, some
international documents have been taken into account, such as the WHO
guidelines on palliative care by the WHO Regional Office in Europe, the
WHO Guidelines on the Palliative Care for Terminal Cancer Patients
(2007), and the Joint Declaration and Statement of Commitment on
Palliative Care and Pain Treatment as Human Rights (August 2008). It is
because the importance of international cooperation is determined by the
priority of international law established by the basic legal documents of
the Russian Federation.
It should be mentioned that in regard to ethical issues concerning care
at the end of life and futile medicine, provisions of professional codes in
Russia are also important relevant guidelines. For example, the Physician’s
Oath is included in Article 60 of the Fundamentals, obliging physicians to
be honest in performing their professional duty; to dedicate all their
knowledge and strength to the treatment and prevention of diseases, and
to the preservation and improvement of the health of people; to be always
ready to provide medical care; to relate to the patient attentively and care-
fully, and to preserve medical confidences; to act in the patient’s interests
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114 Chapter Five
irrespective of the patient’s religion, nationality, race, social standing or

other circumstances; and to maintain the utmost respect for human life
and never perform euthanasia.
According to the Medical Code of Ethics (at the Pirogov Medical
Congress in July 1997), in providing medical assistance for a terminal
patient, the physician must exert every effort to provide the necessary
emergency care. The physician must not perform euthanasia or involve
others in this practice, but he/she must relieve the sufferings of the dying
patient by every available, known and permitted means. The decision
about withdrawal of resuscitation, especially when there is no encephalo-
graphic evidence of irreversible brain death, should be made collectively
where possible. The physician should respect the patient’s right to spirit-
ual support. The Ethical Code of the Russian Physician, approved at the
Fourth Conference of the Russian Medical Association, in November 1994,
gives a similar definition of the physician’s conduct (Chapter 2, Article 14,
“The Physician and the Patient’s Right to Dignified Death”).
Euthanasia as an act of deliberate termination of a patient’s life, be it
either at his/her request or at the request of the patient’s family, is unac-
ceptable; the same applies to passive euthanasia. Passive euthanasia
implies the withholding of common treatment at the bedside of the dying
patient. The physician must relieve the sufferings of the dying patient by
all available and legal ways. Pain relief is absolutely essential (Novikov
and Osipova 2005). The physician should guarantee the patient’s right to
spiritual support by a minister of any religious denomination.
FUTURE DEVELOPMENT ON THE ISSUE

In the twenty-first century, one of the key factors indicating the level of
social civilization should certainly be the quality and availability of pallia-
tive medicine for terminal patients. The main principle of palliative care
implies that each and every person has the right to receive medical care
and be treated with equal dignity and respect in life and when facing
death. As shown in this particular chapter, Russia has a long history of
ethical and professional development of palliative medicine: in books,
papers, manuals, laws/guidelines, medical, social, ethical and legal issues
of end-of-life care are profoundly explored.
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For further development of palliative medicine as well as dealing with

medical futility in Russia, it is important to introduce palliative medicine
as a specialty into the List of Medical Specialties of the Ministry of Health
and Social Development. It is also crucial to stimulate further improve-
ment of existing legislation, including new provisions on pain clinics,
hospices, homecare teams, as well as setting standards for medical staff in
palliative medicine, development of the federal system of statistical
recording of patients who need palliative care, and development of proto-
cols for disease management. Other important areas for future improve-
ment in dealing with these issues include defining medical and economic
standards for structure units, methodological principles with regard to the
improvement of patients’ quality of life with advanced chronic diseases. It
could be helpful in future to encourage extra-budgetary funding (sponsor-
ship from commercial and non-government public structures, religious
institutions) to create new opportunities in this particular area.
To solve these issues, professional associations for palliative care spe-
cialists have been created to facilitate drawing out a unified national pro-
gram for strategic planning of the palliative care development which has
a close cooperation with the international society.
REFERENCES
Ekkert NV. 2006. Palliativnaja pomosch’ // Organizacija i ocenka kachestva
lechebno-profilakticheskoj pomoschi naseleniju // Uchebnoe posobie. — M.,
pp. 357–380.
Gnezdilov AV, Ivanjushkin AJa, and Millionschikova VV. 1994. Dom dlja zhizni
(House for life), Chelovek, 5, pp. 116–121.
Ivanjushkin AJa and Hetagurova AK. 2003. Istorija i etika sestrinskogo dela.
M., GOU VUNMC, p. 20.
Jubilee Bishops’ Council of the Russian Orthodox Church. 2000. Bases of
the Social Concept of the Russian Orthodox Church. Available at: http://
orthodoxeurope.org/page/3/14.aspx.
Lebedev VM, ed. 2002. Kommentarij k Ugolovnomu kodeksu Rossijskoj
Federacii. M., pp. 258–259 (Kommentarii k stat’jam 105, 110 —
Krasikov Yu.A.).
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Matuzov NI. Pravp na zhizn’ v svete Rossiiskuh I mezhdunarisnyh standartov.

“Provovedinije”, 1998, No. 1, p. 198.
Modnikov OP, Rodionov VV, and Novikov GA. 2004. Kostnye metastazy raka
molochnoj zhelezy (patogenez, klinika, diagnostika i lechenie). — M., Fond
“Palliativnaja medicina i reabilitacija bol’nyh”.
Novikov GA and Osipova NA, eds. 2004. Lechenie hronicheskoj boli onkol-
ogicheskogo geneza, M.
Novikov GA, Osipova NA, Rudoj SV, Prohorov BM, Vajsman MA, and
Konstantinova MM. 2000. Palliativnaja pomosch’ onkologicheskim bol’nym.
Posobie dlja vrachej (recommendation for physicians). — M.
Novikov GA, Sokolov VV, Kabisov RK et al. 2001. Fizicheskie faktory v pallia-
tivnoj pomoschi onkologicheskim bol’nym. Posobie dlja vrachej
(recommendation for physicians). — M.: Tipografija RIIS FIAN.
Novikov GA, Chissov VI, and Osipova NA, eds. 2002–2003. Problemy pallia-
tivnoj pomoschi v onkologii. Antologija nauchnyh publikacij. (anthologie of
scientifique publication), — M., 3 volumes — Fond “Palliativnaja medicina
i reabilitacija bol’nyh”.
Novikov GA, Sokolov VV, Kabisov RK, Vajsman MA, Prohorov BM, and Rudoj
SV. 2003. Metody korrekcii narushenij gomeostaza v palliativnoj pomoschi
onkologicheskim bol’nym. Posobie dlja vrachej. — M., Tipografija
Rossel’hozakademii.
Novikov GA, Akademika RAMN, Chissov VI, and Modnikov OP. 2004a. “Kurs
lekcij po palliativnoj pomoschi onkologicheskim bol’nym” v dvuh tomah, M.
Novikov GA, Solov’ev VI, and Prohorov BM. 2004b. Palliativnaja pomosch’
onkologicheskim bol’nym na regional’nom urovne. — Smolensk, FGUP
“Smolenskaja gorodskaja tipografija”.
Novikov GA, Chissov VI, Prohorov BM i dr. Sostojanie i perspektivy razvitija
palliativnoj pomoschi onkologicheskim bol’nym. Kurs lekcij po palliativnoj
pomoschi onkologicheskim bol’nym. V 2 tomah. T.1. — M., 2004c, p. 320.
Novikov GA, Prohorov BM, Vajsman MA, and Rudoj SV. 2005a. Kratkoe klin-
icheskoe rukovodstvo po palliativnoj pomoschi pri VICh/SPIDe. — M.:
“Globus”.
Novikov GA, Osipova NA, Prohorov BM, Vajsman MA, and Rudoj SV. 2005b.
Palliativnaja pomosch’ onkologicheskim bol’nym. Uchebnoe posobie (rec-
ommendation for education). — M., OOD “Medicina za kachestvo zhizni”.
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Novikov GA, Akademika RAMN, and Chissov VI, eds. 2006a. Palliativnaja
pomosch’ onkologicheskim bol’nym, M.
Novikov GA, Osipova NA, Prohorov BM, Vajsman MA, and Rudoj SVM. 2006b.
Lechenie hronicheskoj boli onkologicheskogo geneza. Uchebnoe posobie.
OOD “Medicina za kachestvo zhizni”.
Silujanova IV. 2001. Etika vrachevanija: sovremennaja medicina I pravosla-
vie. — M., pp. 246–247.
Zil’ber AP. 1998. Etika i zakon v medicine kriticheskih sostojanij. — Petrozavodsk,
Izd-vo PGU, p. 560.
Zil’ber AP. 2000. Komfortnyj podderzhivajuwij uhod pri umiranii (eticheskie i
juridicheskie aspekty). M.: Biomedicinskaja etika pp. 154–168.
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CHAPTER SIX
MEDICAL FUTILITY IN AUSTRALIA
Dominique Martin
SUMMARY
This chapter reviews some of the recent literature concerned with end-
of-life issues in Australia in order to provide an overview of the role of
medical futility in end-of-life care in this country. It reveals an evolving
approach to these issues that is influenced by a number of different
domains of care, from general practice to intensive care units, and by a
broad variety of decision makers governed by relatively new legislation
and policy that concerns the use of advance directives.
Despite the absence of a formal definition of medical futility in
Australian policies, a broad consensus on the key elements of the con-
cept and the role they play in guiding ethical practice is evident both in
the law and in professional guidelines. This is evident in policies govern-
ing resuscitation orders and in recent efforts to facilitate a legal frame-
work for advance care directives and to promote the use of such
directives. Australia is striving to achieve a better understanding of end-
of-life care within society and the healthcare community, as well as to
promote best practice in decision making about medical futility and
end-of-life care.
119
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120 Chapter Six
INTRODUCTION
Most Australians enjoy the privilege of ready access to an excellent stand-
ard of healthcare and the benefits of recent developments in medical sci-
ence. The average life expectancies of Australian men (79 years) and
women (84 years) are among the highest in the world. The relative abun-
dance of quality healthcare available to Australians comes at a significant
financial cost — 9.4% of GDP is spent annually on healthcare (AIHW
2011) — and also poses particular challenges for those involved in mak-
ing decisions about care at the end of life. For as many as 50% of
Australians who die each year, death may be anticipated (Palliative Care
Australia 2005, p. 9), enabling patients and care providers to plan end-
of-life care and to make important decisions about such care. Despite the
wealth of treatments available, patients inevitably approach the limits of
contemporary medicine, where the failure of organ systems that precedes
death — regardless of the disease process or injury involved — can no
longer be reversed or stalled. At this stage, curative treatment is no longer
effective although palliative treatment, which aims to ease suffering rather
than halt or reverse illness, often remains useful. In some cases, although
treatment may be able to temporarily suspend the progression of disease
or compensate for organ failure, its failure to reverse the process and
achieve better health means that it is deemed effectively useless. In these
settings, further treatment aimed at restoring or preserving bodily func-
tions may be deemed futile and the decision is made to withhold or
withdraw such treatment.
At a conceptual level, the definition of medical futility appears seduc-
tively simple. An intervention or treatment may be deemed “medically
futile” with respect to a particular goal that can be either specific and
quantifiable, such as the restoration of a physiological function, or more
complex and qualitative, such as the achievement of a patient’s personal
health goals. The administration of adrenaline in the setting of cardiopul-
monary resuscitation (CPR) might temporarily restore a cardiac rhythm,
but may not result in the patient’s longer-term survival and discharge from
hospital. When making decisions about the utility of any treatment, medi-
cal practitioners and other decision makers must weigh the probabilities of
benefits and harms to the patient in the context of the patient’s own prefer-
ences and goals. As far as possible, medical practitioners try to inform and
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Medical Futility in Australia 121
guide treatment decisions based on the best available evidence.

Unfortunately, medicine remains an inexact science. Even where well-
known treatments for common conditions are concerned, uncertainty
remains.
Over large populations being treated, small risk probabilities mean that
a few will nevertheless suffer rather than benefit from treatments. Where
numbers suggest low probabilities of benefit, a lucky few may neverthe-
less make “miraculous” recoveries. Accordingly, making judgments about
medically futile treatments in practice is fraught with difficulty, and espe-
cially so at the end of life, when the fear of giving up too soon may impair
our ability to achieve a good death.
In the past decade, efforts to improve care at the end of life in Australia
have resulted in new legislation, policies and guidelines, as well as numer-
ous studies exploring current practices and attitudes to end-of-life care,
and a growing body of literature that reviews and debates the issues raised
in end-of-life decision making. Although medical futility is not always
referenced in this work, it remains a core component of this field of study
and practice. Providing end-of-life care entails at least a partial recogni-
tion that some forms of care are futile. This recognition enables decision
makers and care givers to set aside treatments that may be unduly burden-
some on patients, costly for healthcare budgets and distressing for families
and care givers, and to provide palliative care. Importantly, recognition of
medical futility with respect to a particular kind of treatment does not
mean that all other forms of treatment are futile, or “merely” palliative.
Distinguishing the role of palliative care in the setting of decisions about
medical futility is a key issue in the Australian healthcare system.
THE HEALTHCARE SYSTEM IN AUSTRALIA

The Australian healthcare system consists of a national public healthcare
program named Medicare. Funded by taxpayers, this program provides
free emergency healthcare to all resident citizens and permanent residents
(and visitors from other countries with reciprocity agreements) as well as
healthcare for non-emergent conditions. It entitles those with Medicare
cards to free treatment in public hospitals and from medical practitioners
who “bulk bill”, and to free or subsidized treatment by doctors, some
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122 Chapter Six
dentists and optometrists for specified conditions. The public hospital

system is jointly funded by state and federal governments and is adminis-
tered at the level of state and territory governments. The system includes
the Pharmaceutical Benefits Scheme (PBS), which provides essential
medicines to all citizens, with copayments for those who do not have a
Healthcare card — a welfare program that entitles them to free medicines.
Under the Medicare system, most Australian citizens have access to an
excellent level of care. On the other hand, waiting lists for non-urgent
surgery, to see specialists and even to see general practitioners providing
free care at “bulk-billing” clinics (which do not charge a copayment) may
be painfully long. Furthermore, public patients have no freedom of choice
of specialist. There is thus a thriving private healthcare system as well,
which offers those who pay for private health insurance access to a range
of services including private hospitals, specialists of choice and much
faster access to non-urgent care. The government encourages participation
in private insurance by penalizing those earning over a certain income
who do not take out such insurance.
Costs and Decision Making in Australia’s Healthcare System

Decisions to limit the essential medical care of an individual patient in
Australia, regardless of whether they are privately insured or not, are
never made on the basis of costs alone. Although a patient might exhaust
the number of “free” allied health consultations they are offered by their
insurer or the public system each year, or a work cover insurance company
may refuse to fund a particularly expensive operation that the insurer
deems is unnecessary or not related to the workplace injury, if a treatment
is covered by Medicare, or a medication included in the PBS, these are
unlikely — if ever — to be withheld simply on the basis of costs for a
particular individual. Nevertheless, rising healthcare costs are an impor-
tant concern for the government, with 121.4 billion AUD spent on health-
care in the year 2009–2010 (AIHW 2011). Consequently, healthcare
providers are encouraged to minimize costs by avoiding unnecessary
procedures, investigations and treatments and by the judicious provision
of cost-effective care.
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Futile care at all stages of life may include admissions to intensive care,
surgical procedures, specialist medications, blood transfusions or simply
prolonged hospital admissions that can produce enormous financial costs
as well as directly impair access for other patients to receive such care who
would be more likely to derive a benefit. These considerations undoubt-
edly influence practitioners in busy public hospitals who constantly face
the pressure of increasing demands on finite resources — most obviously
in the form of limited bed numbers.
Although the Australian government influences medical decision mak-
ing through the regulation of funding and the creation of guidelines and
policies governing particular practices such as organ donation and alloca-
tion, most decisions about medical care take place at a more individual
level, in association with the patients concerned. Healthcare in Australia
may be provided within a variety of domains, and deaths occur in various
settings: 16% of Australians die at home, 20% in hospices, 10% in nursing
homes and the rest in hospitals (Department of Health and Ageing 2011).
Those involved in providing end-of-life care may be drawn from commu-
nity care settings involving general practitioners, nurses or outpatient
programs. Nursing homes, hospices and palliative care programs in par-
ticular may offer or facilitate the discussion of end-of-life issues. Within
hospitals, the emergency department (ED), inpatient wards and the inten-
sive care unit (ICU) represent three different domains of decision making.
Movement between these areas or consideration of patient transfer
between them may necessitate decision making about end-of-life care and
the possible futility of various treatments.
Whether in the context of a possible admission to the ICU or a routine
visit to a general practitioner, decision making about end-of-life care usu-
ally involves patients, their families and doctors. The advantages of com-
munity-based decision making often include a more relaxed and less
time-pressured environment, familiarity between healthcare providers and
patients and the ability of patients to participate. In hospitals, patients may
be too unwell to participate in decision making, providers are likely to be
unknown and unfamiliar with patient preferences, and decisions may need
to be made within very short time frames under highly stressful condi-
tions. On the other hand, the pressured environment of emergency and
intensive care medicine may offer some advantages. Patients and their
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124 Chapter Six
relatives may be more willing to confront the challenges of decision mak-

ing when the prospect of death and the suffering associated with some
conditions and treatments become a tangible reality. Furthermore, doctors
required to act as “gatekeepers” to the ICU and those practicing emer-
gency medicine may be better equipped and more accustomed to inform-
ing patients about the probabilities of treatment success, and the advantages
and disadvantages of particular forms of care. End-of-life decision making
and care in Australia may take place in many different settings, but the
issues and challenges faced by patients and care providers are essentially
the same regardless of the healthcare domain in which they occur.
Ethics and Issues at the End-of-Life

Ethical discussions about end-of-life issues in Australia, like those in
many countries, are often framed by the principles of beneficence, non-
maleficence and respect for autonomy and human dignity. The multicul-
tural nature of Australian society means that ethics in practice often
requires sensitivity to and respect for a variety of religious and cultural
values and practices that may influence the attitudes of patients and their
families, as well as those of doctors, to the way end-of-life issues are
understood, explored and expressed (e.g. Sneesby et al. 2011).
Respect for patient autonomy acknowledges the right of individuals to
participate in decision making regarding their medical care. Competent
patients are entitled to refuse treatment — even where it is thought to be
life saving — and may in some cases choose between different treatment
options offered by their doctors. However, patient autonomy does not
entail a right to insist upon treatment that medical practitioners deem
futile or harmful. Australian patients (or their proxy decision makers) who
are dissatisfied with the options presented by their doctors may seek a
second opinion, but cannot insist upon treatment where this has been
refused by a care provider on the grounds that it is not in the patient’s best
interests. While medical practitioners are required to inform patients
about treatment options and to consider patient preferences, facilitating
their participation in decision making, respect for autonomy should never
outweigh professional obligations to avoid harm and to promote the well-
being of patients.
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The individualized conception of autonomy that has dominated medi-

cal ethics for some decades has recently begun to evolve, as accounts of
shared decision making and relational autonomy gain wider recognition.
In Australia, cultural, ethnic, educational and linguistic barriers to com-
munication and understanding between patients and care providers may
compromise efforts to respect patient values and hence autonomy and to
involve patients in decision making, especially about end-of-life care
(Smith et al. 2009; Johnstone and Kanitsaki 2009). Inclusion of family
members in decision making is a routine practice, although rarely driven
by formal protocols. Documentation of not-for-resuscitation (NFR)
orders, for example, usually has a place to note whether the family or next
of kin has been involved in the discussion, but consultation with family is
not mandated.
As patients approach the end of their lives, treatments tend to offer less
therapeutic benefit and their potential side effects accordingly may appear
disproportionately harmful. Many patients endure prolonged and frequent
hospital admissions during their last year of life (Rosenwax et al. 2011),
and may grow weary of intravenous cannulations and other “minor” inva-
sive procedures, even where these offer therapeutic benefit. On the other
hand, patients desperate to survive may demand extraordinary interven-
tions in the hope of gaining more time or obtaining a cure, despite sub-
stantial evidence that such procedures may be harmful and will not
succeed. It is the physician’s role, in association with the patient and/or
his/her family, to consider the potential therapies available and their
advantages and disadvantages, in the light of the patient’s evolving clini-
cal condition and preferences. However, end-of-life care is often associ-
ated with significant costs to the Australian community, in particular
through hospital admissions and emergency services calls (Kardamanidis
et al. 2007). Where these costs are unnecessary and avoidable, they may
compromise efforts to provide care elsewhere in the healthcare system,
especially in the setting of limited resources. Thus recognition of futile
care is essential in the ICU setting, for example, to ensure that access to
the ICU is equitable. Australia’s ageing population may place ever higher
burdens on end-of-life care and will require careful management to ensure
that healthcare is equitably distributed between all members of the
community. Another important concern for justice in end-of-life care is
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126 Chapter Six
that of equitable access to care, with some communities lacking adequate

resources for palliative care and end-of-life care planning. In particular,
remote indigenous communities may face significant access barriers to
end-of-life care (McGrath et al. 2006).
In end-of-life care, the aim of care providers, patients and their families
is to achieve “a good death”. In essence, a good death involves minimal
suffering, occurs at a time that cannot be significantly postponed and
takes place in an environment conducive to the patient’s well-being —
perhaps at home, or in hospital, and in the presence of loved ones. To
achieve this, in addition to providing standard medical care, respecting
autonomy and promoting beneficence and avoiding harms, medical prac-
titioners must be attuned to the spiritual, emotional and cultural needs of
their patients and their family members, recognizing that good end-of-life
care extends beyond the provision of standard medical care to include
palliative care in its broadest conception. A further critical element for
physicians is the ability to provide leadership in decision making which
concerns the cessation or withdrawal of treatment, especially where treat-
ment is identified as futile (see Murphy 2008). “Dying with dignity” is a
popular phrase in Australian society and within the medical community.
The concept of “dying with dignity” refers to both the minimization of
suffering at the end of life, and the respect of patients’ wishes and values
in decision making.
The Australian Medical Association (AMA) in its 2004 Code of Ethics
offers the following advice regarding care of the dying patient:
“1.4 The Dying Patient:

a. Remember the obligation to preserve life, but, where death is deemed to
be imminent and where curative or life-prolonging treatment appears to
be futile, try to ensure that death occurs with dignity and comfort.
b. Respect the patient’s autonomy regarding the management of their
medical condition including the refusal of treatment.
c. Respect the right of a severely and terminally ill patient to receive treat-
ment for pain and suffering, even when such therapy may shorten a
patient’s life.
d. Recognise the need for physical, psychological, emotional, and spiritual
support for the patient, the family and other carers not only during the
life of the patient, but also after their death (AMA 2006a).”
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MEDICAL FUTILITY IN AUSTRALIA: CONCEPTION,

GUIDELINES AND REGULATIONS
At a basic conceptual level, an action is perceived to be futile when it fails
to achieve a particular goal or goals. It is judged futile with respect to that
goal or goals. Pre-emptive judgments regarding medical futility involve
probability estimates of achieving benefits, just as do any medical treat-
ment decisions. The longstanding international debate regarding defini-
tions of futility arises from attempts to nominate specific goals or
probabilities of success with which to identify futility, as well as from
controversy regarding the role of futility assessments in medical decision
making. Examining definitions of futility through the prism of CPR is
helpful in clarifying the issues at stake.
The most simple conception of medical futility is that of a treatment
that will not achieve the intended physiological effect in a particular case.
Treatment success may be defined in a number of ways. The most basic
goal of CPR is to restore the vital physiological functions which are sus-
pended in cardiac or respiratory arrest. Immediately, time becomes
another measure of success — how long will the heart or lungs continue
to function after CPR is ceased? For example, cardiac rhythm and circu-
lation may be restored for a few seconds during CPR, but this hardly
qualifies as successful CPR. Furthermore, it surely could not be described
as a benefit — however small — to the patient, as he is likely to be una-
ware of the transient restoration of his cardiac function. A minimal length
of survival time is required to define successful CPR, but with increasing
time other factors beyond mere restoration of circulation or breathing
become involved. A patient may survive the arrest but be completely
dependent on the continuation of other measures such as mechanical
ventilation or intravenous infusions of cardiac drugs — both available
only in the intensive care unit. Such an outcome is often described as a
mere prolongation of death. However, although at a physiological level
CPR has effectively only suspended the dying process, it may represent
a benefit to the patient — if his family has the opportunity to see him
before death, for example. Both physiological and personal or social
goals thus become entwined. A physiological goal — for example, the
possibility of surviving to particular milestones such as “breathing inde-
pendently”, or “being able to walk to the bathroom” — represents a
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128 Chapter Six
benefit only with respect to the patient’s preferences. Such goals may be
easily quantifiable — for example, “length of survival time during which
patient is able to breathe independently” — by physicians, but their
qualitative value is less readily assessed.
The task of estimating probabilities of success is even harder than that
of defining goals. Our pursuit of evidence-based medicine encourages
patients and practitioners to think in terms of certain outcomes, yet we
forget that even regularly prescribed medications offer only statistically
probable benefits rather than guaranteed effects. Decision making at the
end of life cannot hope to achieve any greater certainty than that which
occurs throughout the spectrum of medical care.
No formal definition of medical futility exists in Australian legislation.
Australian law recognizes a broad conception of futility that is both quan-
titative and qualitative. Willmott et al. (2011) suggest that Australian case
law demonstrates provision of care must be in the patient’s best interests,
and that futile care by definition is not in the patient’s interests. Further,
that care which is unnecessarily burdensome or intrusive may also not be
in the patient’s best interests, and may thus be refused on those grounds.
The idea of promoting best interests and avoiding harm points to a qualita-
tive assessment of treatment goals, although this clearly retains a wide
scope for definition of futility in practice.
Australian guidelines also sidestep the issue of quantifying probabili-
ties of success and defining specific goals. The Australian Medical
Association published a position statement in 2007 that offers ethical
guidance for medical practitioners involved in care at the end of life. It
confidently defines futility as follows:
“Futile treatment — Treatment is futile when it is no longer providing a

benefit to a patient, or the burdens of providing the treatment outweigh the
benefits” (AMA 2007).
It also presents a qualitative understanding of futility that highlights not only
the role of patient preferences and values but also the idea of best interests
of the patient as understood by medical professionals involved in care:
“10.2 Medical practitioners are not obliged to give, nor patients to accept,
futile or burdensome treatments or those treatments that will not offer a
reasonable hope of benefit or enhance quality of life” (AMA 2006).
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As levels of certainty regarding physiological effects decrease, consid-

eration of qualitative factors are likely to increase. Futility is a rationale
essentially based on identification of specific goals which are considered
to be of such value that, if their achievement is unlikely or impossible, no
other benefits are to be considered in decision making. So (allowing for a
qualitative interpretation of futility), if told there is no chance of my sur-
viving discharge from the ICU following cardiac arrest and CPR, I may
decide that CPR would be futile. I value that goal — being sufficiently
well to survive independently of the ICU — so highly that regardless of
any other considerations — including other potential benefits, for exam-
ple giving my son time to say farewell — if it is not achievable, I decide
not to have CPR. Thus estimation of futility is more than a calculation of
possible advantages and disadvantages; it occurs prior to further decisions
regarding the appropriateness of a particular treatment. If I decide it is not
futile, I must then consider other benefits and whether I am willing to risk
harms, and so on.
In end-of-life decision making, the choice of benefit(s) by which to
measure the futility of a treatment is highly significant; if achieving this
particular goal is unlikely or impossible, death is the preferred alternative.
Use of the futility rationale thus highlights the extraordinary nature of
decision making in end-of-life care. Not only does it emphasize that such
decisions are more than mere cost-benefit calculations, it signals the need
to explore the complexities of the deliberating process, and to acknowl-
edge the qualitative and individual nature of value preferences involved
therein.
Advance Care Directives

Although lacking the right to demand futile treatment, Australian com-
mon law dictates that competent individuals have the right to refuse treat-
ment, whether beneficial or not. That is, the right to bodily integrity
prevents forcible treatment where a patient is deemed competent to
refuse. In the case of end-of-life care, where patients are often unable to
consent or refuse treatment, efforts have been made to give patients a role
in decision making through the use of advance directives. An advance
care directive (ACD) is a document which outlines a patient’s treatment
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130 Chapter Six
preferences. Official designation of a medical enduring power of attorney

(MEPA) may also form part of an ACD or an alternative to it, where a
patient designates an individual to make decisions on their behalf in the
event of them being incompetent to do so in the future. ACDs enable
patients to prospectively play a role in decision making in their own end-
of-life care, even where they are no longer competent to do so. Although
not wholly concerned with futility, advance directives may effectively
express patient judgments about futile treatments. For example, advance
directives may refuse life-sustaining treatments in the event of the patient
suffering severe dementia. This suggests that while treatment would suc-
cessfully prolong life, it would fail to achieve the patient’s qualitative life
goals. ACDs often embody subtext regarding qualitative goals and the
futility of pursuing treatment in the face of failure to restore or to achieve
a certain quality of life.
The AMA endorses the use of ACDs as follows:
“8.2 The AMA strongly promotes advance care planning as a process of

supporting patient self-determination, including the development of
advance directives and the identification of surrogate decision-makers such
as Enduring Powers of Attorney (EPA) (or similar), as a means to ensure
that the patient’s values and goals of care are known. ACPs are prepared by
the competent patient to assist in decision-making if he/she loses the capac-
ity to make treatment decisions in the future (AMA 2007).”
Not all Australian jurisdictions have legislation recognizing the use of

ACDs; however, “anticipatory refusals of treatment” are recognized in
common law, “whether spoken or written” if five criteria are met:
“(1) The person must have been competent when he or she formulated the
advance directive.
(2) The refusal of consent must have been made voluntarily, unequivo-
cally, and without duress.
(3) The refusal of treatment must represent a ‘firm and settled commit-
ment’ rather than an offhand remark that informally expresses a
reaction.
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(4) The advance decision must have been made with reference to and
intended to cover the particular circumstances which subsequently
occurred.
(5) The person must have known in broad terms the nature and effect of the
treatment to which he or she was refusing consent (Jordens et al. 2005).”
A 2009 survey of Australian intensive care doctors revealed variable

responses to the use of ACDs in hypothetical scenarios, with a number of
doctors acting in conflict with the advance care plan or the wishes of a
medical enduring power of attorney (Corke et al. 2009). The authors sug-
gest that lack of understanding of the legal status of such directives, as
well as “personal differences in ethics, beliefs and responsibility” may
result in variable decision making despite the availability of ACDs (p.
125). Another study of Australian emergency physicians found low rates
of education regarding ACDs despite significant support for their system-
atic introduction and standardization in practice (Wong et al. 2011). The
study demonstrated a clear influence of ACDs on treatment decision mak-
ing among emergency clinicians, although consideration of the patients’
conditions and comorbidities, as well as ethical concerns remained highly
influential. It seems ACDs are an important and useful factor in decision
making, but do not act as an outright replacement for the professional duty
to consider and act in the patient’s best interests.
Unfortunately, ACD ownership within Australia remains an exceptional
practice. A 2003 study at a major tertiary hospital in Melbourne found that
only 7.9% of patients entering the emergency department had some kind of
ACD, although 82.6% expressed support for some form of ACD and 59.6%
“had spoken with at least one person about how much treatment they
wanted in the event of serious illness” (Taylor et al. 2003, p. 589). A more
recent regional survey of aged care facilities in New South Wales found
that the median prevalence of ownership of ACDs among residents was 5%
(Bezzina 2009). Recent research is helping to identify the factors which
must be addressed if ACDs are to play an effective role in end-of-life care
in Australia. Numerous legal barriers to the implementation of ACDs are
reviewed by Seal (2010), who advocates a national approach that would
facilitate education and promote consistency in practice. Boddy et al.
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132 Chapter Six
(2012) review the challenges for medical practitioners striving to formulate

and implement ACDs with patients, and authors such as Jeong et al. (2010)
and Watts (2011) discuss the role of nursing staff in contributing to advance
care planning.
Not-For-Resuscitation (NFR) Orders

A common element of many advance care directives is a not-for-resusci-
tation order, also known as a DNR or do-not-resuscitate order. Frequently,
however, such orders are established during hospital admissions, and are
generally intended to be reviewed if the patient’s condition changes dur-
ing admission, or at least on subsequent hospital presentations. Most NFR
orders are distinct from ACDs in that they are developed in the acute set-
ting, in the light of the patient’s current condition and comorbidities,
rather than in anticipation of a future state of affairs. Although originally
designed specifically to preclude attempts to perform CPR in the event of
cardiac or respiratory arrest, their scope has now widened to effectively
constitute a more comprehensive care plan akin to ACDs within the hos-
pital setting. They may include limitations on the use of inotropes, antibi-
otics, parenteral feeding or admission to intensive care. They may also be
used to preclude initiation of medical emergency team (MET) calls, where
a team urgently attends patients whose condition has suddenly deterio-
rated on the ward, with a view to implementing more intensive treatment
and preventing progression to cardiac or pulmonary arrest. Typical NFR
forms enable those completing them to indicate “yes” or “no” with respect
to each form of treatment listed, including the use of palliative treatments.
This helps to ensure that the medical needs of patients identified as being
“NFR” are not simply ignored. Despite being identified as “NFR”, a
patient may well receive considerable benefit from treatments such as
noninvasive ventilation or antibiotics. Patients for whom treatment has
become purely palliative also require ongoing care that risks being
ignored if hospital staff interpret “NFR” as being “not for any treatment”,
a danger that has been confirmed in some international studies (e.g. Smith
and Bunch O’Neill 2008; Beach and Morrison 2002; Chen et al. 2008).
Recent research in Australia and New Zealand suggested that “general
medical patients admitted to hospital and documented as NFR carry a
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higher mortality risk and a prolonged LOS [length of stay] both of which
are only partly explained by these patients’ greater age and comorbidity”
(McNeill et al. 2012, p. 68).
In a study in 2007 among Australian hospitals, 54% of surveyed hospi-
tals had formal NFR policies, with 45% of these providing a “standard-
ized order form” to document NFR orders, and 52% simply writing the
order in patient notes (Sidhu et al. 2007, p. 73). Only 68% stipulated that
the rationale for the order must be documented. Most contained space to
document whether the order had been discussed with the patient and fam-
ily (p. 75). Although “futility” is often invoked as a rationale for withhold-
ing CPR in the event of an in-hospital arrest, the degree to which such
decisions are made using the best available evidence regarding the
patient’s condition, as well as the extent to which the patient’s qualitative
goals are considered is uncertain at best. Micallef et al. (2011) demon-
strated strong levels of agreement on NFR order decisions among hospital
specialists in Australia, suggesting that there is a reasonably consistent
approach to decision making from the medical perspective. However, the
same study also concluded that considerable barriers exist to timely deci-
sion making and documentation of NFR status, with the result that some
patients suffer inappropriate resuscitation attempts. Shanmuganathan
et al. (2011) offer suggestions for early identification of patients who may
need their resuscitation status clarified prior to clinical deterioration.
MAKING DECISIONS ABOUT FUTILE TREATMENT:

HOW AND BY WHOM
By now, it should be evident that decision making in end-of-life care in
Australia is a complex process. Decision making may take place in a vari-
ety of settings, from aged care facilities to general practice clinics and
emergency departments and intensive care units. For many Australians, it
seems that decision making begins within the home, where discussion of
treatment preferences in the event of serious illness may take place with
family members (Taylor et al. 2003). The gradual evolution of advance
care planning means that more formal decision making may involve
patients, relatives, lawyers, and medical and nursing staff in the community
or within healthcare institutions. At this stage, however, it seems probable
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134 Chapter Six
that many decisions in Australia take place in the acute setting within hos-
pitals, when a patient’s condition deteriorates significantly or during the
end stages of a terminal condition.
Depending on the clinical circumstances, in particular the severity of
a patient’s condition, the patient’s capacity to participate in decision
making and the extent to which the patient’s death has been, or may be
anticipated, decisions about the futility of particular interventions and
the approach to further care may be made in a number of ways. In some
cases, protocols may exist to guide and govern the structure of decision-
making procedures whether in the formulation and documentation of
advance care directives or NFR orders, or simply to facilitate a standard
procedural approach from professionals involved. Usually, medical
practitioners familiar with the patient’s medical history and current
condition review the patient’s prognosis in the light of available treat-
ments, often in consultation with specialists. Synthesizing this informa-
tion, medical staff present the patient and/or their next of kin with a
summary of the possible treatments and the likely benefits and risks of
each. Often, patients are then able to express their own preferences,
concerns about options and to identify personal goals they may have.
Nursing staff may also be consulted and can play a key role in com-
municating patient preferences (Watts 2011). In some cases, patients
will be advised of only a very limited range of treatments, which may
simply be palliative. Presenting options such as surgery or more inten-
sive care as futile, doctors will explain why these treatments are not an
option. On the other hand, where the risks and benefits of potential
treatments are equivocal, patients may be urged to make a decision
between conservative or invasive treatment, with little definitive guid-
ance from doctors. Some patients prefer not to play a role in decision
making, delegating this task to their doctors or family members. In the
case of pediatric patients, parents in Australia play a key role in deci-
sions to withdraw or limit treatment at the end of life (Moore et al.
2008). Where agreement is not achieved between medical staff, patients
and their families, pathways to resolution may be implemented, such as
consultation or review by other medical staff, the involvement of patient
advocates or hospital ethics board reviews. Rarely, the law becomes
involved.
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As we have seen, a variety of potential decision makers may be

involved to a greater or lesser extent in end-of-life care. Formal surrogate
decision makers for patients may have medical enduring power of attor-
ney or guardianship. Parents act for their (minor) children, while in the
case of incompetent patients with no surrogate, close family members are
usually accorded decision-making powers. All parties involved in decision
making are expected to act in the best interests of the patient. However,
conflicts between healthcare providers and patients and their relatives
most commonly arise through failure to communicate relevant informa-
tion, to explain decisions and to consider and respect the preferences and
values of the patient with respect to end-of-life care (see e.g. Forbes et al.
2008; Smith et al. 2009). Conflict can arise when patients (or their fami-
lies) disagree with doctors regarding the futility of treatment, but perhaps
just as frequently occurs when doctors continue to pursue treatment that
patients or their families feel is overly burdensome and futile. In the latter
case, however, it may be harder for patients to express their preferences,
particularly to medical staff who may presume that most patients will
prefer “active treatment”. Nursing staff that spend more time with patients
may be more receptive to the expression of preferences regarding the
withdrawal of treatment, and may advocate on behalf of patients.
The Issue of Unilateralism in Decision Making

A frequent concern about the invocation of “futility” in medical decision
making is that it may be used by doctors to make inappropriate and uni-
lateral decisions that wrongfully deny patients life-saving care. Involvement
of patients and their next of kin in decision making plays a key role in
preventing misunderstandings and ensuring that patients’ interests are
promoted. In some cases, however, patients and/or their relatives or sur-
rogate decision makers may disagree with doctors about the futility of a
particular treatment. In situations of disagreement, a second opinion may
be sought. Rarely, a care provider and/or a hospital may be sued by the
patient or their surrogate. In such settings, Australian common law clearly
upholds the right of doctors to refuse to provide or continue futile treat-
ment that is not in the patient’s best interests, regardless of family prefer-
ences. However, if the determination of futility is judged erroneous,
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136 Chapter Six
medical practitioners are required by law to continue treatment (see

Stewart 2011). On the other hand, the state of Queensland requires doctors
to obtain consent for the withdrawal or withholding of treatment, even
where such treatment is futile (Willmott et al. 2011). This creates a con-
fusing situation in which, as Willmott et al. (2011) note, doctors may be
legally required to act in violation of their ethical and professional duties
by providing, at least temporarily, care that is not in the best interests of
their patient. According to Stewart (2011), however, rather than forcing
doctors to provide care that conflicts with their professional duty to act as
they judge best for the patient, this added procedural element of futility
determination helps to protect the patient’s interests and provides path-
ways for review that enable doctors as well as the patient and their rela-
tives to have a say in the decision-making process. Nevertheless, Stewart
concludes, “Those responsible for the patient’s care should bear in mind
the views expressed but ultimately they must decide what in clinical terms
and within the resources available is best for their patient” (p. 160).
EUTHANASIA AND MEDICAL FUTILITY

Patients or their relatives may on occasion ask medical staff to assist them
in dying, in order to end suffering. A Victorian study found that 59% of
doctors who have treated terminally patients have received “requests to
hasten death by withdrawing or withholding treatment” (Neil et al. 2007,
p. 722). The issue of euthanasia has been the subject of passionate public
and professional debate in Australia for more than a decade. “Euthanasia”
literally means “a good death”; however, it is commonly understood to
refer to the practice of deliberately hastening death in order to relieve suf-
fering. Various categories of euthanasia have been defined. Voluntary
euthanasia is performed with the consent of the person who chooses to
die, and is sometimes distinguished from assisted suicide in which a per-
son is enabled to end her own life. Involuntary euthanasia is performed
against the wishes of the person and is usually considered to be synony-
mous with murder. Non-voluntary euthanasia, on the other hand, occurs
when the person is not able to provide consent. Finally, euthanasia is
sometimes distinguished as active or passive, where active refers to
actions such as the administration of drugs intended to hasten death, and
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passive refers to the withdrawal of (or failure to initiate) life-sustaining or

-prolonging treatments with the intention of hastening death. A number of
excellent critiques of the confusing and often misleading terminology sur-
rounding euthanasia exist. Some have even suggested we should avoid the
term altogether (e.g. Kuiper et al. 2007). I adopt here the terms commonly
found in the Australian media and literature.
Some authors have argued that “passive euthanasia” is a misnomer;
however, Garrard and Wilkinson (2005, p. 65) argue that where treatment
is withheld or withdrawn for the purpose of hastening death, where this is
deemed to be in the patient’s best interests and where the intention is not
simply to remove overly burdensome treatment, this constitutes passive
euthanasia. Interestingly, they also exclude cases where treatment is with-
drawn or withheld on the grounds of futility, that is, “incapable of benefit-
ing the patient” (p. 65). If futility is construed broadly and qualitatively, it
is easy to conclude that nearly all possible cases of passive euthanasia will
in fact be judged simply the withdrawal of futile treatment. If treatment is
judged capable of benefiting the patient on more narrow physiological
grounds, for example where parenteral hydration maintains renal function
and thus prolongs life, then withdrawal of fluids for the purpose of hasten-
ing death would count as passive euthanasia.
Most references to euthanasia in the Australian literature tend to be
concerned with active euthanasia. In Australia, recognition of medical
futility and the decision to withdraw or to withhold treatment is rarely
referred to as “euthanasia”. As noted earlier, Australian law supports the
practice of withdrawing or withholding treatment deemed futile or not in
the best interests of patients. Nevertheless, a 2007 study by Neil et al.
showed confusion among the medical community in the state of Victoria
regarding the definition of euthanasia, and whether withdrawal or with-
holding of treatment with the intention of hastening death also constituted
euthanasia.
In 1995, the Northern Territory of Australia passed the Rights of the
Terminally Ill Act (Bartels and Otlowski 2010, p. 540), becoming the first
jurisdiction in the world to legalize active voluntary euthanasia (AVE).
The law entitled competent adults suffering from a terminal illness to
receive assistance to kill themselves. Applications to undergo euthanasia
required signatures from three doctors including a specialist, and a
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138 Chapter Six
psychiatric review to ensure the decision was not the result of a treatable
depression. Following the deaths of only four patients, the Act was over-
turned by the Euthanasia Laws Act 1997 which invoked (for the first time)
a constitutional right allowing the Federal Parliament to make laws for the
Australian territories and to invalidate a territory law — which had never
before been invoked (p. 540). Subsequently, most Australian states have
witnessed unsuccessful efforts to introduce legislation permitting AVE. In
addition, the Federal Parliament in 2005 criminalized “the provision of
information on how to commit suicide” in response to efforts by
Australia’s most well-known euthanasia campaigner, Dr. Philip Nitschke,
to advise patients on methods of peaceful suicide (p. 541).
A number of the so-called mercy killings, assisted suicides or euthana-
sia cases have been prosecuted in Australian law, usually involving rela-
tives of the deceased. Bartels and Otlowski (2010, pp. 531–532) note that
only one case since 2000 has resulted in a custodial penalty, largely due
to the fact that it was atypical of euthanasia cases. Debate about the intro-
duction of AVE legislation in Australia is ongoing, thanks to euthanasia
support groups, campaigners such as Dr. Nitschke, the Australian Greens
Party and other politicians who continue to put forward bills on the sub-
ject. Newspapers and television programs report on court cases and
patients who have traveled abroad to undergo euthanasia (e.g. Button
2007). Surveys suggest a significant proportion of the Australian public
supports some form of legalized euthanasia (e.g. Horin 2011) and as much
as 53% of medical practitioners (Neil et al. 2007, p. 723). Surveys also
show that a large proportion of Australian medical practitioners have been
asked by patients to hasten death, and 35% admit to deliberately adminis-
tering drugs with the intention of hastening death at the request of a
patient (p. 723). More commonly, doctors frequently administer palliative
treatments with the intention of relieving suffering, but in full knowledge
that a secondary effect of such treatments will be to foreseeably hasten
death. The doctrine of double effect holds that in these circumstances,
administering treatment is not euthanasia, and the treating medical staff
are not responsible as such for the patient’s death. In some cases, pallia-
tion may be regarded as a grey area designed to mask euthanasia in the
absence of a legal right to perform euthanasia. On the other hand, the
Australian states of Queensland, Western and South Australia have
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legislated to ensure that doctors may safely offer patients palliative care
without fear of prosecution. For example, the Consent to Medical
Treatment and Palliative Care Act 1995 of South Australia states:
17. The care of people who are dying
(1) A medical practitioner responsible for the treatment or care of a patient

in the terminal phase of a terminal illness, or a person participating in
the treatment or care of the patient under the medical practitioner’s
supervision, incurs no civil or criminal liability by administering medi-
cal treatment with the intention of relieving pain or distress:
(a) with the consent of the patient or the patient’s representative; and
(b) in good faith and without negligence; and
(c) in accordance with proper professional standards of palliative care....
This Act subsequently makes clear that euthanasia is not permitted:
“18. Saving provision
(1) This Act does not authorise the administration of medical treatment for
the purpose of causing the death of the person to whom the treatment
is administered.
(2) This Act does not authorise a person to assist the suicide of another
(White et al. 2011, p. 489).”
CONCLUSION
The concept of futility in medical decision making has a long and varied
history. Contemporary medical practitioners and societies, at least in the
privileged environments of developed nations such as Australia, need no
longer fear that the outcomes of disease or injury are to be determined
solely by prayer, willpower or fate when the contents of the doctor’s bag
are exhausted. Instead, we face a far more complex situation, in which it
seems that there is always something more that might be offered by med-
ical science in the hope of promoting recovery, prolonging life or allevi-
ating symptoms: another operation, a new combination of antibiotics, a
novel therapy. Even where actual therapies are non-existent, hopes may
be pinned on holding out long enough to receive treatments that remain
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140 Chapter Six
merely speculative possibilities, such as some genetic modifications and

stem cell transplants. In this context, amidst the “mythos of regenera-
tion” in modern medicine, it is difficult simply to say, “There is nothing
more that can be done.” Doctors, other healthcare providers, patients
and their friends and family are left to struggle through a wealth of
sometimes patchy and inconclusive information in order to answer the
fundamental question which remains: “Is there anything more that ought
to be done?”
In Australia, as is the case elsewhere, questions regarding the utility or
futility of providing particular treatments in particular cases are shaped by
a variety of concerns. Although in individual cases, doctors begin by con-
sidering the particulars of the specific patient at hand, the nature of mod-
ern healthcare is such that broader concerns about the availability of
resources within hospitals and within wider healthcare systems inevitably
play a role in decision making. For policy makers, resource issues are
necessarily a major consideration in determining not simply what ought to
be done for patients in particular circumstances, but also what can realisti-
cally be done in the setting of resource constraints, in order to respect
broader social goals of justice and equity that may be less obviously at
stake in the setting of individual cases.
Although the practical and ethical goals and values involved in decision
making about treatment at the end of life are essentially the same as those
that guide decision making about the provision of healthcare in general,
the stakes appear higher as death approaches. The human costs of with-
holding treatment deemed futile at the end of life include untimely
death — an error that cannot be reversed. On the other hand, the costs of
providing genuinely futile treatment may be high at a personal level —
with prolongation of suffering — and burdensome for strained healthcare
systems facing ageing populations and ever-greater costs.
End-of-life care, decision-making models and procedures for advance
care planning are emerging priorities in Australian policy, legislation and
medical practice. Issues such as euthanasia and the limitation of treatment
at the end of life are important subjects of debate within Australian fami-
lies as well as among the professional healthcare community. Although
considerable research is still needed to determine how best to implement
more effective end-of-life care and decision making, the variety of
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existing models and research into both public and professional values and
attitudes suggests there is substantial agreement among the diverse
Australian population regarding the pursuit of a good death for each of us.
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CHAPTER SEVEN
MEDICAL FUTILITY IN JAPAN
Yasuhiro Kadooka and Atsushi Asai
SUMMARY
Medical futility is a difficult issue to resolve and its concept is elusive.

Unlike in Western countries, little research has been performed on this
theme in Japan. However, the questions set forth by authors in this arti-
cle indicate that many Japanese healthcare providers have already recog-
nized the significance of this issue. Japan uses universal health
insurance, which supports social justice and healthcare access for all.
Japan has a rapidly aging population, and boasts the highest longevity in
the world. Excessive attention to the goals of sustaining life without
considering the patients’ personal wishes is considered the main prob-
lem of Japanese end-of-life care (Macer 2005). It is supposed that medi-
cal futility is an immediate problem that must be addressed in Japan. In
this chapter, we describe the healthcare system, end-of-life issues,
decision-making, related laws and guidelines, as well as euthanasia in
Japan. We also show the results of our empirical survey on medical
futility.
145
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146 Chapter Seven
THE HEALTHCARE SYSTEM IN JAPAN

Japan’s population, which has been steadily decreasing since 2005, was
about 127 million in 2009. Children (0–14 years), the working-age group
(15–64 years), and elderly people (≥ 65 years) constituted 13.5%, 64.5%,
and 22.1% of the total population, respectively. The population is expected
to fall below 100 million by 2045 (Japanese National Institute of
Population and Social Security Research 2006). The declining birth rate
and rapidly aging population are serious social issues. In 2009, there were
176,471 medical facilities (174,315 beds) in Japan. There were 8,739
hospitals, most of which were private clinics. The average daily number
of hospitalized patients was 1,308,219, and the average daily number of
outpatients was 1,416,845 (Japanese Ministry of Internal Affairs and
Communications 2011; Ministry of Health, Labor and Welfare 2010).
These numbers are nearly unchanged from the previous year.
The average lifespan in Japan was 79.59 years for men and 86.44
years for women in 2009 (Japanese Ministry of Internal Affairs and
Communications 2011). The population aging rate in 2008 was 22.1%.
Although health conditions were extremely poor in Japan immediately
after World War II, the country currently enjoys the highest life expec-
tancy in the world and stands as the leader in the “health Olympics: the
rankings of country life expectancies”. One of the reasons for the coun-
try’s remarkable health gains is the effectiveness of its healthcare system
(Bezruchka et al. 2008). Japan has had universal health insurance cover-
age extending to all citizens since 1961. In 2001, 2.25% of 20–59 year
olds were uninsured. Almost the entire Japanese population is covered by
this system. Insured members pay 30% of medical expenses, but burdens
on the elderly, children, and low-income individuals are lower. Patients
can choose hospitals and doctors and request healthcare services accord-
ing to their preference. Furthermore, there is an upper limit to the amount
patients pay; patients can receive financial assistance if the amount
claimed is too large. Thus, insured members can avail themselves of
expensive treatments. Such a system ensures universal accessibility and
allows for achievement of optimal health outcomes.
A fee-for-service system has been implemented for individual treat-
ment services since 1958. National health expenditure consists of health
insurance funds (about 49%), taxation (about 37%), and copayments
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Medical Futility in Japan 147
(about 14%). The system is blamed for the large number of hospital beds
and long hospitalization periods, frequent medical examinations, and
expanded use of medical tests, resulting in an inefficient healthcare sys-
tem, relatively high drug expenses, and overtreatment of the elderly
(Ikegami and Campbell 1995; Idezuki 2008; Wang et al. 2010). During
high-speed economic growth, managing health resources may not have
been difficult. However, these factors synergized and contributed to rising
medical expenses and structural problems (Idezuki 2008). A rise in the
aging population and advances in medical technology, among other fac-
tors, have led to an increase in national health expenditure, which
amounted to 34.8 trillion yen (about 424.4 billion USD, 1 USD = 82 yen)
in 2010. To solve this problem, cost-containment measures were imple-
mented, including introduction of a flat-fee payment system called diag-
nosis procedure combination (DPC), an increase in the payment rates for
the elderly, and fee schedule revisions. While these measures failed to
reduce total medical expenditure, they did achieve some results: the aver-
age length of hospital stay was significantly reduced, patients could obtain
more medical information, and the quality of medical treatment and hos-
pital management improved (Wang et al. 2010). A high rate of aging
population, accompanied by a deterministic population decline in the
future, will affect the maintenance of the universal health insurance sys-
tem and result in a possible healthcare resource crunch.
According to the Organisation for Economic Co-operation and
Development (OECD) Health Data 2008, the practicing physician density
(per 1,000 population) was 2.15 and total health expenditure (percentage
of gross domestic product) was 8.1%. The values of both indicators occu-
pied lower positions compared to those of other member countries.
Conversely, the average length of stay for acute care was 18.8 days, hos-
pital bed density (per 1,000 population) was 13.8, psychiatric care bed
density (per 1,000 population) was 2.7, acute care bed density (per 1,000
population) was 8.1, computerized tomography (CT) scanners per million
population was 97.3, and the density of magnetic resonance imaging units
(per 1,000 population) was 43.1. These numbers were the highest among
OECD member countries.
Although dealing with medical futility and allocating scarce health
resources are substantially different problems, the aforementioned issues
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148 Chapter Seven
with the Japanese healthcare system, including the rapidly aging popula-
tion, appear to be associated with medical futility. Bagheri anticipated that
medical futility would be an emerging issue in the near future and would
hit the ethical and health policy debates in Japan. In 2006, he and his col-
leagues conducted a questionnaire-based survey directed at Japanese
bioethics specialists (Bagheri et al. 2006). Almost 60% of respondents
believed that medical futility was an especially relevant issue in Japanese
healthcare and that aggressive treatment could be stopped on medical
futility grounds in spite of the available financial support. They concluded
that along with the ongoing reform of the medical system, health insur-
ance policies, and an increasingly aging population, discussions about
medical futility and the application of life-sustaining treatments for mar-
ginal benefit would find more importance in Japan. However, there have
been few expert discussions and investigations on this theme since
Bagheri’s effort. Presently, many Japanese people recognize that medical
cost inflation is a serious social concern, but this has not led to increased
discussions on medical futility. Little has been known about what ordinary
Japanese people understand about medical futility and further research is
needed to clarify it.
ETHICS IN END-OF-LIFE SITUATIONS IN JAPAN

Statistics published by the Ministry of Health, Labor and Welfare
(MHLW) indicate that the total number of deaths was 1,141,865 in 2009
and that 80% of these occurred at medical facilities. According to a public
survey conducted by the MLHW in 2008, more than 80% of laypeople
wished to undergo end-of-life care and die in medical institutions
(Japanese Ministry of Health, Labor and Welfare 2010). In Japan, which
is already on its way to becoming a super-aging society, end-of-life care
is an important concern. In the public survey, more than 80% of laypeople
and 90% of healthcare workers expressed concerns about end-of-life care.
The survey also revealed that almost 85% of healthcare workers felt dis-
tress and anxiety regarding end-of-life care and that 33.9% of medical
doctors and 48.2% of nurses encountered disagreements on decision-
making with regard to end-of-life care.
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Most Japanese deaths are caused by chronic lifestyle-related situations

or debilitating disease. Malignant neoplasm, stroke, and cardiac attack are
the three main causes, which accounted for 344,105, 180,745, and
122,350 deaths, respectively, in 2009 (Japanese Ministry of Health, Labor
and Welfare 2010). In particular, malignant neoplasm deserves the utmost
attention. The Cancer Control Act, which formed the basis for the Cancer
Control Propulsion Program, was established in 2007. The goal of this
program is to reduce cancer deaths, improve the quality of life (QOL) of
cancer patients, and diffuse palliative care. In Japan, hospice care was
begun in the 1970s, and expanded after legalization and introducing the
hospice care reimbursement in 1990.
Despite this, the impact of this program has not been strong enough.
A total of 195 facilities were registered and the number of beds totaled
3,830 in 2009 (Okishiro and Tsuneto 2010).
Japanese physicians are hesitant to forgo life-prolonging treatments for
terminally ill patients. This tendency was revealed through empirical sur-
veys that compared the attitudes of physicians from different countries by
using vignettes (Slutsky and Hudson 2009; Yaguchi et al. 2005). In every-
day clinical settings, end-of-life decisions have been largely left to indi-
vidual doctors because an institutional system for dealing with controversial
issues in a team context does not exist and very few hospitals in Japan
have a system for clinical ethics consultation (Aita and Kai 2006). In the
case of considering termination of life-prolonging treatments for termi-
nally ill patients, many Japanese physicians confront legal barriers
because of the lack of relevant legislation and guidelines that protect phy-
sicians, emotional barriers, as well as cultural barriers because of physi-
cians’ paternalism and the lack of a method for determining formerly
competent patients’ preferences (Aita et al. 2007). However, it turns out
that laypeople do not have a preference for aggressive life-prolonging
treatments. A public survey conducted by the Ministry of Health, Labor
and Welfare (MLHW) in 2008 reported that 89%, 95.3%, and 96% of
laypeople did not wish to continue life-prolonging treatments if faced with
imminent death without hope of recovery, a persistent vegetative condi-
tion, or a cerebrovascular accident (CVA)/dementia, respectively (MLHW
2010). The survey also revealed that 24.6%, 16.9%, and 13.5% of
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150 Chapter Seven
laypeople desired life-prolonging treatments if their family members were

faced with the same three situations, respectively.
In Japan, there are no rules or laws regarding surrogate decisions and
advance directives. It is unclear whether the guardian of an adult is author-
ized to make medical decisions. In a previous report on a clinical ethics
consultation, a consultant team received questions about end-of-life care
for incompetent patients from not only healthcare workers, but also fami-
lies of patients (Fukuyama et al. 2008). In Japan, living wills are not
legally effective and are rare; <1% of people have some form of advance
directive at the time of death (Macer 2005). However, this situation may
be changing. In a public survey conducted by the MLHW in 2008, 61.9%
of laypeople and almost 80% of healthcare workers supported a living will
for refusal of life-prolonging measures in end-of-life situations (47.6%
and about 70%, respectively, in 1998) (Japanese Ministry of Health, Labor
and Welfare 2010). The Japan Society for Dying with Dignity, established
in 1976, demands the right to withdraw or withhold life-sustaining treat-
ments and calls for legislation of living wills. Members of the organiza-
tion write the wills, and its membership has continued to increase,
reaching about 125,000 in 2010 (almost 0.1% of the population).
In 2009, interest in issues surrounding brain death increased with the
revision of the Organ Transplant Law, which was prompted by problems
associated with a shortage of donor organs from brain-dead patients (only
83 brain-dead transplants in 10 years under the old law) and criticisms of
transplant tourism. The revision appears to have succeeded and brain-dead
transplants are becoming more frequent. During the course of the revision,
a question about the definition of death was raised: is brain death equiva-
lent to the final death of a person? It was reported that, socially, people
were increasingly accepting the idea that brain death equates to final
death. However, under the revised law, the interpretation that “brain death
is legal death” only applies in the context of organ transplants from brain-
dead donors. There are still many cases in Japan where life-prolonging
treatments, including mechanical ventilation, continue to be performed on
brain-dead patients until cardiac death is achieved.
Japanese views on the body or the dead body are rooted in the Shinto
religion. In Shinto, which is based on animism, the body is not a mere
substance, but also something precious connected to the two gods that
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gave birth to the country. Cardiac death is perceived as natural death and
the time of a soul’s separation from its body. The body of the deceased
should be treated as a person. Although views on life and death will likely
change with time, it is an intrinsic value to maintain life as long as the
body is alive, regardless of the condition. This means that medical work-
ers have a duty to make an all-out effort to save a person’s life even if s/
he is in an irreversibly comatose state (Asai et al. 2010).
Cases associated with police investigation into ventilator removal from
end-of-life patients and the cultural background behind decision-making
in healthcare have triggered life-prolonging treatments, which invoke
futility. Both of these situations are discussed further.
MEDICAL FUTILITY: RELATED LEGISLATION

AND GUIDELINES
While basic laws on medicine exist in Japan, the Japanese penal code has
not been revised to incorporate drastic changes to end-of-life care result-
ing from technological advances in recent decades (Aita and Kai 2006).
There are no practical laws or procedures for the issue of medical futility,
such as the Texas Advance Directive Law in the United States. No univer-
sally accepted definitions for medical futility have existed in Japanese
society to date. This has led to increased anxiety about legal issues among
healthcare workers.
In the case of medical futility, whether to forgo a treatment that is con-
sidered futile is a major issue. Although there is no precedent in Japan,
some representative cases of mechanical ventilator removal from end-of-
life patients at Hokkaido Prefecture Haboro Hospital and Imizu City
Hospital found the life-prolonging treatments to be “meaningless” or
“non-beneficial”, as reported in some newspapers. The former case
involved a patient in his 90s who recovered spontaneous heartbeat (with-
out breathing) after resuscitation following cardiopulmonary arrest. The
attending physician removed the respirator after evaluating the patient’s
brain-dead condition and determined that there was minimal chance of
recovery. The latter was a case of respirator withdrawal involving seven
patients aged 50–90 years, all comatose with end-stage diseases, between
2000 and 2005. In both cases, police reports on the attending physicians
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152 Chapter Seven
were sent to the prosecutor’s office. However, none of the physicians were
charged because a direct connection between respirator removal and
patient death could not be established. The turmoil over withdrawal of
care possibly places an unnecessary burden on dying patients and their
families, misleads the mass media and public, and troubles police and
prosecutors. The lack of legal and medical frameworks in Japan and the
traditional practice of family-oriented decision-making (decision to with-
draw respirators was reportedly made without knowledge of the patients’
wishes and preferences) were cited as reasons for police involvement
(Aita and Kai 2006).
According to a public survey conducted by the MHLW in 2008, 38.7%
of physicians and 37.8% of nurses expressed a need for detailed standards
or definitions for end of life and forgoing life-prolonging treatments
(Japanese Ministry of Health, Labor and Welfare 2010). Although new
laws have not been enacted, some guidelines regarding the forgoing of life-
sustaining treatments for end-of-life patients have been developed in recent
years. Forgoing such treatments may gain acceptance and social consensus
in the near future. Medical futility is one of the important reasons for
developing these guidelines which support the professional judgment of
futility and withdrawal of life-sustaining treatments from terminally ill
patients, but they do not provide unilateral authorization to healthcare
workers. Three representative sets of guidelines are presented here.
The Guidelines Regarding End-of-Life Care in Emergency Medicine,
developed by the Japanese Association for Acute Medicine in 2007, holds
that the continuation of treatments that do not benefit a patient and are not
desired by anyone, including the patient’s family, undermines the patient’s
dignity and inflicts more suffering on the patient. These guidelines present
four concrete end-of-life situations:
1) irreversible failure of whole brain function;

2) reliance on an artificial device due to irreversible lethal organ failure
in the absence of alternative treatments;
3) the patient is expected to die within a few days despite continuation
of treatment;
4) a condition that, after aggressive treatments, turns out to be the termi-
nal stage of a malignant or irreversible disease.
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The guidelines state that life-prolonging treatments can be forgone in

response to a patient’s advance directive, patient family’s acceptance, and
the medical team’s careful judgment based on the best interest of the
patient, and that the medical team should comply with the family’s prefer-
ence if they wish to continue treatment (Japanese Association for Acute
Medicine 2007).
The second set is the Guidelines for the Decision-Making Process in
End-of-Life Care, developed by the MHLW in 2007. It states that the deci-
sion to withhold or withdraw treatments from end-of-life patients is gov-
erned by patient preference and careful judgment by medical staff based
on medical validity and appropriateness. The guidelines also discuss a
need to establish ethics committees (Japanese Ministry of Health, Labor
and Welfare 2007).
The third set is the Guidelines for Professional Ethics, developed by
the Japan Medical Association and revised in 2008. It states that aimless
prolongation of life for patients who have no hope of recovery and face
imminent death is meaningless and damages dignity, that the patient’s
quality of life should be valued more, and that forgoing such treatments
should also be considered. These guidelines regard the end-of-life condi-
tion (impossibility of treatment and inevitable death) and a patient’s prior
wish to forgo treatment as important considerations (Japan Medical
Association 2008).
FUTILE TREATMENT: HOW AND BY WHOM

DECISIONS ARE MADE?
The societal and political environments surrounding the patient-physician
relationship and the decision-making process have gradually changed in
Japan. The reigning principle underlying medical ethics is currently tran-
sitioning from paternalism to respect for patient autonomy. Western con-
cepts, such as patient autonomy and informed consent, have slowly spread
and people are now becoming more and more conscious of their rights as
patients (Bito et al. 2007; Ito et al. 2010). However, the cultural facets of
Japanese healthcare and society and the collective responsibility for patient
care are very different from those that exist in Western countries, where
such theories and principles were initially formulated (Ito et al. 2010).
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154 Chapter Seven
The sick may prefer to leave decisions up to others or use subtle linguistic
expressions to convey their will. However, there is still a hierarchical social
system, that makes it difficult for patients and doctors to be truly at par in
their relationship. Many sick persons are afraid to be a bother or burden to
others, so they attempt to avoid trouble that could occur if they clearly
expressed their will and it differed from that of others (Macer 2005).
Japanese patient-physician relationships are said to have four underly-
ing characteristics that differ from those in Western cultures: collectivism,
Confucianism, masculinity, and high context (Ishikawa and Yamazaki
2005). With respect to collectivism, individuals are consistently conceptu-
alized as a part of a larger group and are expected to subordinate their
personal goals to those of the group. Confucianism, which views harmony
and obedience as virtues, has an impact on hierarchical and paternalistic
relationships and family relationships, which are stronger than in Western
countries. In particular, family members are more actively involved in the
patient-physician relationship, and decisions are made within this triadic
relationship.
With the right to privacy guaranteed by the Constitution, confidentiality
is commonly written in many professional ethics codes or laws for health-
care workers, and the Personal Information Protection Law went into
effect in 2005. However, there are common exceptions in clinical settings.
In a public survey conducted by the MHLW in 2008, 77% of laypersons
indicated that they knew about the poor curability of their disease.
Nevertheless, in such cases, 8.7% of physicians indicated that they would
inform the patient first (3.4% in 1998) and 33.6% indicated that they
would inform the family before informing the patient (58.8% in 1998).
Moreover, regarding decision-making in such situations, 18.5% of physi-
cians responded that they would ask the patient for an opinion (8.5% in
1998) and 21.6% responded that they would ask the family (35.2% in
1998) (Japanese Ministry of Health, Labor and Welfare 2010). Another
survey, which investigated the desired involvement in healthcare decision-
making, revealed that both the patient and family members wanted the
family’s involvement in medical decision-making, and concluded that the
family plays a crucial role in healthcare decision-making, even when
patients are competent to make their own decisions (Ito et al. 2010).
Japanese healthcare workers must take into account the psychological
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benefits of the family, which in some cases provides no quantitative or

qualitative benefits to the patient in some cases.
A questionnaire survey conducted by Bagheri and colleagues in 2006
included many questions on decision-making regarding medical futility,
in addition to its expected impact on the Japanese healthcare system
(Bagheri et al. 2006). A majority of respondents believed that the refusal
to offer or continue treatments on the grounds of a judgment of futility can
never be morally justified, that futility of the treatment should be evalu-
ated on the basis of the doctor’s medical judgment and the patient’s value
judgment. They responded that the patient/family preference and consid-
eration about available health resources are important factors for evaluat-
ing futility. The study indicated that physicians should not be empowered
to impose evaluative judgments that conform to professional standards
and social interest. They concluded that there was no support for a physi-
cian’s unilateral decision-making about futile care and that respondents
were in favor of shared decision-making. The findings of the survey were
similar to arguments presented in North America (Jecker and Perlman
1992; Tonelli 2007). This survey, however, suffers from two limitations:
the small sample size and the fact that respondents were bioethics exper-
tise who may have been influenced by Western bioethics principles.
Findings from this survey may not sufficiently reflect Japanese attitudes
toward decision-making in futility cases.
ATTITUDES OF HEALTHCARE PROVIDERS AND THE

PUBLIC ON MEDICAL FUTILITY
Like Bagheri et al., we also felt the need for empirical surveys to explore
the futility issue. The underlying issue is a disagreement between patients
and healthcare workers, particularly the physician, on forgoing a treat-
ment that invokes futility. We have investigated the differences in attitudes
between the two groups. To this end, we conducted a preliminary inter-
view study directed at Japanese healthcare workers (Kadooka et al. 2011).
Participants of the study presented many cases that had been judged futile
and stated the reasons for providing such treatments. A summary of the
cases that have been judged as futile treatment, factors in futility judgment,
and reasons for providing such treatments are shown in Tables 1 to 3.
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156 Chapter Seven
Table 1. Summary of Futile Treatment Cases.

Patient disease state (number of patients) Treatment provided
Debilitated by terminal cancer (8) Chemotherapy/surgical procedure
Unlikely to survive due to severe postoperative All forms of life-saving treatment
complications (4)
Patients with persistent vegetative state due to All forms of aggressive treatment
suicide or cardiopulmonary resuscitation (3)
Brain-dead patients (3) All forms of aggressive
or life-saving treatment
Unlikely to survive due to multiple organ failure (3) All forms of aggressive treatment
Neonates unlikely to survive due to severe chro- All forms of aggressive treatment
mosomal aberration (2)
Alcoholism with hepatic cirrhosis (1) Repeated treatments for esophageal
varices
Unlikely to survive due to severe head injury (1) Craniotomy procedure
Acute myocardial infarction, unlikely to return to Coronary artery catheterization
spontaneous circulation (1) procedure
Common cold (1) Antibiotic and intravenous
hydration
Infertile patient guessed to be menopausal (1) Fertility treatment
Repeated aspiration pneumonia combined with Pneumonia treatment
severe dementia (1)
Bedridden with advanced dementia, unable to Endoscopic gastrostomy
take orally (1)
State of shock, terminal stage of brain tumor (1) Administration of vasopressor agent
Arrhythmia and severe dementia (1) Pacemaker implantation
Incompetent elderly with cardiac disease with Cardiac surgery
poor quality of life that cannot improve (1)
Most cases involved aggressive or life-sustaining treatments for end-of-life

patients or incompetent patients who had already lost their competency.
Healthcare resources were not considered in the context of allocated funds,
but rather a balance between cost and benefit. Reasons for providing such
treatments included factors other than patient request. These results are
consistent with the suggestion of Bagheri et al. in their study. Discussions
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Table 2. Factors for Judging Futility in the Cases.
1 Patient’s physical condition

2 Objective medical information
3 Treatment effects
4 Treatment risks
5 Preferences on the part of the patient
6 QOL of the patient
7 Psychological burden on the part of the patient
8 Balance between costs and benefits
9 Societal norms
Table 3. Reasons for Carrying Out Treatments Judged as Futile.
1 Request for treatment from the patient

2 No refusal of treatment by the patient
3 Inadequate decision-making process (patient’s inadequate understanding, healthcare
worker’s inadequate explanation, awkwardness of discussing stopping treatment,
time/effort needed to persuade patients)
4 Inadequate relationship between the healthcare worker and patient (no trust or acceptance
on the part of the patient, neither side wants to experience unpleasant feelings)
5 Instruction to give treatment from other physicians (senior physician, attending phy-
sician, primary care physician)
6 Feeling of guilt toward the patient (due to treatment complications)
7 No standards for judging futility
8 No standards, education, or regulations on forgoing treatments
9 Societal understanding that refusing requests from the patient is not allowed
10 Inadequate ideas and education about perspectives on life and death
11 The facility is a public institution
from a macroscopic perspective may also be required to resolve this issue.

Subsequently, we designed a questionnaire survey based on the results of
our initial study. The survey targeted not only Japanese healthcare workers
but also laypeople, and attempted to evaluate differences in attitude
toward medical futility in the two groups. The survey is likely to suggest
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158 Chapter Seven
that the attitudes of the two groups are different and that this issue per-
vades Japanese clinical settings. Quantitative data analysis is underway
and the results will be published in the near future.

Past empirical surveys have shown that some Japanese healthcare workers
actually carried out active euthanasia (Asai et al. 2001; Morita et al.
2002). However, euthanasia is not permitted by Japanese law. Penal Code
Article 202 prohibits assisted suicide and homicide with consent. Two
cases of active (non-voluntary) euthanasia received considerable public
attention in Japan. In both cases, attending physicians were convicted of
homicide. In the Kawasaki Kyodo Hospital case trial, an irreversibly
comatose patient died after removing the ventilator and administration of
muscle relaxant at the request of the patient’s family. In this case the
Yokohama district court (first trial) discussed the legality of forgoing life-
prolonging treatment for end-of-life patients with respect to two necessary
conditions: the patient’s right of self-determination and the limits of treat-
ment obligation. The latter rationale referred to medical futility:
“If the physician provided appropriate treatments and the effectiveness

reached its limit, there would be no legal obligation for physicians to con-
tinue or provide treatments judged as being medically meaningless, despite
the patient’s wishes. In such case, it could be said that the physician would
not have a legal obligation to provide treatment and that forgoing treatment
would be permissible.”
According to the verdict, the physician’s value judgment regarding the

patient’s death was inappropriate and physician judgment should have
been limited to treatment effectiveness.
However, the higher court (the second trial) pointed out four problems
with this rationale:
First, it is not clear at what point (probability of survival) the treatment
was deemed meaningless, and second, the rationale does not override the
physician’s obligation to continue treatments as long as the probability of
survival exists. Third, there are no considerations for the principle that the
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physician’s best efforts until patient death is a mere call for professional
ethics, and finally, it is presumed that forgoing life-prolonging treatments
according to this rationale is an omission. Although a necessity for social
deliberation on this rationale was argued, there has been no progress on
arguments about its validity. The rationale has not achieved adequate
social consensus for forgoing futile treatments.
CONCLUSION
In Japan, the main trigger for considering medical futility, which has not
yet been studied and argued adequately, appears not to be the avoidance
of conflicts between healthcare workers and patients. As Bagheri et al.
pointed out, the issue has emerged along with an ongoing reform of the
healthcare system and end-of-life care. The healthcare system has reached
an equitable level and almost no one is prevented from seeking medical
care for economic reasons. Under such circumstances, Japanese health-
care workers can provide meticulous or thorough treatments to some
extent. Our recent study will be likely to present differences in attitudes
between healthcare workers and laypeople toward medical futility. The
determination of medical futility is based on moral judgments about treat-
ment appropriateness at the bedside. The treatment goals and benefits,
which include the patient’s value judgments, must be identified before
considering futility. While futility judgments may be diverse in each case,
what drives patients to undergo treatments that are considered futile by
healthcare workers? Empirical surveys as well as arguments based on
theoretical assumptions are also important in resolving the remaining
issues in Japan.
Many Japanese healthcare workers probably encounter futility in clini-
cal practice given their professional or value judgments. It can be difficult
for Japanese healthcare workers to insist on futility and refuse such treat-
ments in disadvantageous situations, such as a lack of insufficient argu-
ments, lack of specific laws regarding end-of-life care, and precedence for
police involvement. However, it should be noted that the patient’s family’s
excessive involvement in decision-making makes it difficult to identify the
net benefit to the patient and leads to implementation of futile treatments.
Good communication and relationships between healthcare workers and
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160 Chapter Seven
patients and their families will help avoid the futility issue to some extent.
Guidelines or laws regarding medical futility, which may gain public con-
sensus, are also desirable not only for the relief of healthcare workers, but
also for the fulfillment of the patient’s best interest and provision of
appropriate treatments.
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CHAPTER EIGHT
MEDICAL FUTILITY IN CHINA: ETHICAL

ISSUES AND POLICY
Yongxing Shi, Mingjie Zhao, Yang Yang,

Cunfang Mao, Hui Zhu and Qingli Hu
SUMMARY
In China, due to the unique cultural background and economic condi-

tions, terminal care ethics highlights as a “family culture”. Based on the
Chinese culture, the authors prefer to elaborate futile medical care and
palliative care together under the issue of hospice care. By explaining
the Chinese healthcare system, end-of-life ethics, relevant legislation
and professional codes of hospice care, and the distinction and similarity
between euthanasia and futile medicine, this paper presents a series of
challenges in dealing with futile medical care in China.
The article suggests that only by providing education in end-of-life
issues, improving the social security system, establishing multi-channel
financing, adjusting the current medical insurance policy and integrating
social volunteer teams, can the problems in dealing with medical futility
be solved in China.
163
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164 Chapter Eight
THE HEALTHCARE SYSTEM IN CHINA

Since the founding of the People’s Republic of China, promoting people’s
health has been taken as the primary responsibility and an important
mission by the Chinese government. In the healthcare system there are
four main health policies; the first is the worker-peasant-soldier health
policy, the second is preventive medicine, the third is the policy to
combine traditional Chinese medicine with Western medicine and the
fourth is the policy on integrating healthcare with mass movement.
The Labor Insurance Act instructs the state to provide preventive and
medical care to all workers in the industry and mining sectors; to establish
the Rural Cooperative Medical Care System; and to set up a urban-rural
preventive healthcare network. All of these policies have contributed to
the great improvement of the Chinese people’s health status. The
Constitution of the People’s Republic of China states that “the state
protects people’s health… to develop social insurance, social assistance
and medical care, all of which are required for the protection of citizens’
rights.”
Under the protection of the legal system, the Chinese government
continues to improve the health management system and healthcare
reforms, in order to provide advanced healthcare and better services to
the people.
The average life expectancy of the Chinese population increased from
35 years before liberation (1949) to 73.5 years by the year 2011. In fact,
China has improved the health status of one quarter of the world’s popula-
tion by only using 1% of the world’s health expenditure (Ministry of
Health 2009).
As mentioned, in China the issue of medical futility is dealt with under
the issue of hospice care; however, compared to basic medical care, hos-
pice care is less regulated which has a negative impact on futility deci-
sions and patient referrals to hospice care. In today’s China the annual
new cancer cases are around 160 to 200 million, and there are more than
300 million existing cancer patients with an increasing trend of 3% per
year. The number of deaths among cancer patients is about 1.4 million
per year; however, the cancer cure rate is only 20%. Therefore, the appli-
cation of futile medicine is becoming an emerging issue in the healthcare
system in China.
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Medical Futility in China: Ethical Issues and Policy 165
Medical Insurance System in China

The healthcare system systematically subsidizes, allocates and applies
health resources to improve the health of the population. It is an integral
sector of the social security system and also a sign of a country’s political
system, economic and cultural progress, as well as social civilization
(Cheng 2010).
In China, the healthcare system consists of the healthcare delivery
system, medical insurance system and health surveillance system, all of
which constitute a complete health system. In China, 90% of the health
service institutions, located in both urban and rural areas, belong to three
government administrative systems. One is the local government system
at all levels (province, autonomous region, city and county levels), the
second is the relevant state ministries and commissions system and the
third is the Ministry of Health which includes the State Administration of
Traditional Chinese Medicine. Due to the dual economic structure of the
urban and rural areas in China, healthcare in urban and rural areas have a
different evolutionary development history. The Basic Medical Insurance
System is applied for urban residents, while the New Rural Cooperative
Medical Care System is provided for rural residents.
The Chinese medical insurance system is composed of three types of
supports: basic medical insurance for urban workers, basic medical
insurance for urban residents and the New Rural Cooperative Medical
Care System for rural residents. Meanwhile there are the medical aid
system and commercial health insurance as supplements to the official
insurance system, these including civil servants’ supplementary insur-
ance, enterprise supplementary medical insurance, and insurance for
serious disease. These various types of healthcare systems are able to
cover both the employed and unemployed population in urban areas,
rural residents and the poor in both areas. Basic medical insurance for
urban workers is provided to employees in state-owned enterprises,
foreign-invested enterprises and joint ventures, with a drugs list for
national basic medical insurance, injury insurance and maternity insur-
ance. Basic social medical insurance for urban residents is provided to
other urban residents, including the unemployed, the elderly, children
and students at school, with the national essential drugs list. The New
Rural Cooperative Medical Care System is provided to rural residents
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166 Chapter Eight
with its own drugs list. Commercial health insurance, social medical
insurance and social medical aid complete the whole social medical
insurance system. The medical aid system is provided to those swamped
with unaffordable medical care.
Regarding the healthcare reimbursement policy in China, the three
parties of the state, the collective and individuals proportionally share the
reimbursement cost. The medical insurance fund is coordinated and man-
aged by medical insurance agencies which are independent from the
healthcare system, and are governed at all the different levels of the
Administrative Bureaus of Human Resources and Social Security. Social
medical insurance is one of the five fundamental aspects of social security.
Basic medical insurance for urban workers is a major part of social medi-
cal insurance; its target population is the employee living in the city. This
is a new type of social security system adapting to China’s development
at its primary stage of socialism. It should be noted that the medical insur-
ance fund is centrally raised, managed and accommodated by the social
medical insurance institutions; however, patients have to bear part of the
medical costs based on their salary. The maximum amount of individual
medical expenditure corresponds to their income; the rest would be cov-
ered by the mutual fund of medical insurance. The New Rural Cooperative
Medical Care System is a peasant-mutual-aid system organized, governed
and supported by the government, with the voluntary participation of
farmers, which raises funds from individuals, units and state, based on the
comprehensive arrangement for supporting patients with serious disease
and mutual assistance and aid. The system has been designed in a way that
the health insurance will give more compensation for in-patient services
than out-patient, and more compensation for serious diseases than minor
illnesses.
The Chinese medical insurance system provides free basic medical
care for urban and rural residents; free basic public health services, such
as residents’ health records; healthcare management for children under
six years old; management of maternal healthcare; elderly health man-
agement; hypertension disorder management; and patients with severe
mental diseases etc. Currently, China covers the basic medical insurance
of 1.2 billion people. There are 280 million insured urban employees
across the country and 2,729 counties (cities, districts) have started the
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New Rural Cooperative Medical Care System, with the participation of

924 million people.
It should be mentioned that the medical insurance payment system
has an important impact on the decision-making regarding futile
treatment and hospice services in China. For example, insured patients
(in-patient or out-patient) can get reimbursement if they suffer from
malignant tumors or impaired renal function, or require radiation ther-
apy, chemotherapy, or long-term kidney dialysis. Therefore, in most
medical conditions involving all those treatments, even if there was an
issue of medical futility, as long as the patients were insured all the costs
were covered.
So far, none of the Chinese social health insurance systems explained
in this article has established any program to cover hospice care in the
case of withdrawal of futile treatment. The vast majority of hospice
services for terminal care are not included in their scope. Therefore, the
lack of payment systems and policies in this regard affects the implemen-
tation of hospice care and futility decision seriously. This has caused
problems in dealing with end-of-life issues in China.
ETHICAL ISSUES IN END-OF-LIFE CARE IN CHINA

The ethics of end-of-life care is an interdisciplinary subject, which applies
general ethical principles in terminal care (Du and Hui 2003). The funda-
mental theory of ethics of end-of-life care, including deontology, the
rights theory and professional ethics, is the most basic starting point in the
ethics of end-of-life care.
At present, the ethical issues that need to be discussed in terminal care
are fairness, autonomy and respect as well as sharing responsibilities. The
principles of benevolence, autonomy, do-no-harm and respect of life are
the foundations of the ethics of end-of-life care. The ethics of end-of-life
care in China mainly focuses on the following topics: death and dying,
rights of terminal patients, relationship between terminal patients and doc-
tors, withdrawing treatment and excessive futile treatment, emergency
care and rescue, social and religious supports, terminal patients and their
families, ethical environment of terminal patients, terminal sedation,
euthanasia, and hospice care.
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168 Chapter Eight
In Chinese culture, death is something to be repelled and terrified of,

and it is also a taboo to talk about death. The old saying of “a bad life is
better than death” reflects the concept of death for a considerable number
of people, who have no scientific education about death and dying.
Therefore, when death comes, it is very difficult for patients and their
families to accept it. In China, the issue of medical futility has been con-
sidered part of hospice care and palliative care dealing with patients at the
terminal stage of their life. However, in dealing with terminal care
patients, based on the traditional view, talking about the patient’s death,
palliative care or futile medical care is a taboo for the family members as
well as the healthcare professionals. Based on the patient’s medical con-
dition, when treatment is considered futile, hospice care refers to provid-
ing appropriate medical care for the patient whose life expectancy is no
more than six months in hospital or at home, aiming at alleviating his or
her symptoms and slowing down the development of disease (Shi and
Wang 2009, 2010).
In hospices, medical professionals control the symptoms of patients
with their skills and good care rather than pursuing invasive, painful or
meaningless treatment. Therefore, hospice care is bound to involve caring
for a variety of symptoms in terminal cases, if providing aggressive treat-
ment is futile. Palliative medicine as defined by the World Health
Organization (WHO) is an approach that improves the quality of life of
patients and their families facing the problem associated with life-threat-
ening illness, through the prevention and relief of suffering by means of
early identification and impeccable assessment and treatment of pain and
other problems, physical, psychosocial and spiritual (WHO 2007). In
China, physicians try to follow the WHO’s practice and guidelines on pal-
liative care, and as described by the Chinese words “宁养院” or “临终关
怀病房”, that is “hospice care hospital” or “hospice care ward”, end-of-
life care is provided in those centers.
In practice, a great challenge for terminal care is the traditional Chinese
view of death, in which the end of life or death is inauspicious and the
greatest “evil”. The general attitudes towards death in China is “cherish-
ing life but dreading death”, so most of the irreversibly terminally ill
patients are treated in the traditional way, with their meaningless lives
prolonged by applying modern medical technology. Moreover, Chinese
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medical professionals always feel unprepared when faced with uncon-

scious patients who are at the irreversible terminal stage of life, confronted
with the moral dilemma of the traditional medical ethics core value of
“retrieving the dying and rescuing the wounded.”
There is no clear definition of the concept and the stage of end of life
in China. Normally it refers to the elderly, patients with AIDS and patients
with advanced cancer facing death in a very short time. Terminal care
includes medical care for dying children, adults and the elderly in the
terminal stage. Another understanding of the stage of end of life is the
time process between life and death, which takes either a long or a short
time. This is a necessary lead-time before the end of life, and consists of
gradual changes in the quantity and quality of the patient’s life.
The end-of-life stage can be divided into two categories: the reversible
and the irreversible phases. The former refers to the stage of a disease,
which is reversible by the application of modern medicine, although the
patient’s condition will deteriorate while the disease is worsening. The
latter refers to the situation where the patient is undergoing an expected
survival period in which modern medical measures can do nothing to save
the life beyond its expected term. However, in some cases it is extremely
difficult to make judgments about whether the patient’s condition is in the
reversible stage or the irreversible stage.
Withholding and Withdrawing Treatment

The concept of withdrawing treatment in a broader sense refers to terminat-
ing the ongoing treatment of curable and incurable patients due to various
reasons. The narrow concept refers to the termination of a treatment that
has no therapeutic value for the patient. Complete withdrawal means
discontinuing all the treatment measures and letting the patient die; partial
withdrawal means removing the main treatments but keeping the essential
medication or the life support machine for the patient. Hospitals, physi-
cians, patients and their families have their own reasoning and motivation
for withdrawing treatment or requesting its continuation.
The current and general situation in China is that doctors in ICUs are
aware when the patient is at the terminal stage and providing aggressive
treatment has no meaningful result, and withdrawing the treatment and
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170 Chapter Eight
life support is a reasonable decision. However, the doctors will decide

neither to withdraw nor to propose to the family to withdraw the patient’s
treatment; instead, they will sustain the treatment to the end, where an
important measure of indication — the quality of life — is ignored. This
explains why over-treatment is a relatively common practice and serious
phenomenon in China.
As explained earlier, death in Chinese culture is considered a taboo and
people do not talk about it, and a life of suffering is considered better than
death. Therefore, in our view, death education is an urgent task, especially
public education for the awareness of the concept of “a good death”, as
well as palliative and hospice care. Such a program should support the
development of a better relationship between healthcare providers and
patients and their family (Wang 1998).
Hospice and Palliative Care in China

In China, there is no consensus on the definition of medical futility, nei-
ther an explicit definition nor a clear explanation. So in practice it always
relies on the descriptive explanation of symptoms, leading to the difficulty
in defining related terms such as end of life, dying patients, terminal stage
and its process, hospice care, technology and the ethics of terminal care.
There are even difficulties in naming hospice agencies and their services,
describing their functions, core values, professional responsibilities and
service objectives (Shi 2010).
Hospice or palliative care is an emerging discipline of healthcare in
China; however, there is no unified name for the agencies that provide
terminal care. Most of the Chinese scholars suggest changing the term
“terminal care” as it goes against the traditional Chinese culture. The
medical professionals believe the term “end of life” increases the difficulty
of communicating with patients and their families, and is especially sensi-
tive, irritating and unacceptable for the elderly, and emotionally rejected
by patients’ families as well. However, as a medical term, “hospice care”
has been used by the Ministry of Health, and by using terms such as
“palliative care”, people can make a connection with its real meaning.
The World Health Organization takes the accessibility of palliative
care as a basic human right. The WHO made a practical definition of
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palliative care in 1990, the revision of which in 2002 states: “palliative

care, as a worldwide urgent demand, should be taken as an important
part of national health policies by every country”. Although the goals of
palliative care or hospice care are very clear, in China the health man-
agement system and traditional culture have not adequately adapted to
this idea. Therefore, there is a lack of institutional and structural system
to address patients’ needs through the application of hospice care at the
end of life.
The first terminal care research institution in China, the Hospice Care
Research Center, was established on July 15, 1988, by a Chinese-American
physician, Dr. Huang Tianzhong, and President of Tianjin Medical College
Dr. Wu Xianzhong and Vice-president Dr. Cui Yitai at Tianjin Medical
College. In March 1991, the First National Conference and Workshop of
Hospice Care was held, after which five workshops on end-of-life care
were carried out. In May 1992, the Ministry of Health decided to incorpo-
rate hospice care into the national health development plan.
Since 1990, the hospice agencies have developed in China with various
structures: there is hospice care in general hospitals, specialty hospitals
and community health service centers in some major cities. However,
there are not so many hospice service centers in small cities and rural
areas. According to statistics, in 2006 there were over 200 hospice care
institutes in China, and in 2010 Shanghai with a population of 23 million
had only three registered hospice care facilities. In Shanxi Province with
30,000 deaths from cancer annually, there were only two hospices. Until
July 2011 only one hospice agency was established in Jiangxi Province.
On February 25, 2010, the Standing Committee of Zhengzhou municipal
government issued a regulation in its Suggestion on Accelerating the
Development of the Pension Services of Zhengzhou City, requiring those
hospitals that have the capacity to set up “hospice care wards or institu-
tions”. Since its initiation in 1998, the National Hospice Care Project has
been supported financially by Mr. Li Ka-shing, a businessman from Hong
Kong. This project set up 100 hospice care institutes in China, providing
end-of-life and palliative care, especially for cancer patients, as “people-
centered, holistic care.”
Hospice care in China provides comprehensive palliative care for those
patients in whom aggressive treatment is futile. In the program, a
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172 Chapter Eight
high-quality team addresses the patient’s need through clinic visits, free
home services, out-patient counseling and telephone follow-up. Providing
services to poor people with respect to the patient and his or her family is
their priority.
However, according to the Quality of Death Report by the Economist
Intelligence Unit (EIU) of the Economist Group, which listed the quality
of terminal care in 40 major economies, the highest ranked was the UK,
followed by Australia, New Zealand and Ireland, while China ranked
fourth from the bottom (EIU Report 2010).
POLICY DEVELOPMENT IN MEDICAL FUTILITY

AND HOSPICE CARE
The health administrative departments have not developed regulations and
professional codes for hospice care, nor set up any service policies, rules
and regulations, and there were no technical standards or supervision and
assessment programs. Therefore, there is a lack of professional codes and
guidelines in dealing with futile medicine in hospice care.
Based on the regulation of social benefits, the right of terminal patients
is a legal issue; however, there is no particular legislation to govern the
issues related to terminal care patients in China. There are some related
regulations such as the right of privacy and the right of confidentiality.
Meanwhile, the rights of autonomy, informed consent, medical surveil-
lance, partial exemption from social obligation, appeal and claim, as well
as the right to die are well discussed in China.
Currently, there is no major support for hospices from the government
and hospice care has not been a real priority for health resource allocation
in China. At present, all of the hospice agencies with different names
comply with the general health and medical regulations for medical insti-
tutions, which have been developed by the state and provinces. Under the
planned economy system, their operations followed the policies of getting
profits from drugs, charging the patients for all costs of medical examina-
tion and treatment. This kind of commission charge mechanism is based
on the drive for profits. Therefore, this kind of service and behavior is far
away from the WHO’s concept of palliative care, and hospice care in
China is still at the infant stage of its development.
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In 2006, the Ministry of Health and the State Administration of

Traditional Chinese Medicine issued the Notice of the Urban Community
Health Service Management Measures (Trial) allowing hospice centers to
be a conditionally registered health entity. The Notice for the first time
expresses that hospice care can be registered as an independent depart-
ment in a community healthcare center, providing a legal guarantee for
terminal care in the community health service center, though there is still
a lack of corresponding admission standards and regulations. Therefore,
the terminal care service cannot be functional in the community health-
care services in a real sense.
In order to improve hospice care as an appropriate method to deal with
medical futility, it should be integrated into the national social security
system.
Currently, due to the lack of financial support, the existing hospice care
institutes are unsustainable and find it difficult to run long-term. Therefore,
it is necessary to develop supportive policies at the national level, to
encourage multi-channel financing, and to establish a hospice care founda-
tion. However, improving the volunteer organization system and expand-
ing the volunteer teams would also be very important instruments.
DIFFERENCES AND RELATION BETWEEN EUTHANASIA

AND MEDICAL FUTILITY IN CHINA
The Chinese term for euthanasia first appeared in AD 562–642, in the
book Collect of Peace and Happiness by Dao Zhuo in the Tang Dynasty.
It described peace and happiness as an alias for the Western Paradise
where Buddhists would go after death. The original meaning of euthana-
sia in China is “in the spirit of a good end”, based on the ideological
foundation of the traditional culture.
The Chinese concept of euthanasia is defined in the Law Volume of the
Chinese Encyclopedia as follows: “Under the sincere request of the dying
patients with irreversible diseases who cannot be saved by modern medi-
cal technologies, doctors provide measures to end their lives earlier in
order to reduce the unbearable great pain.”
Therefore, euthanasia in China is defined as the process of dying
patients who suffer from an incurable disease, because of the extreme
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174 Chapter Eight
mental and physical pain, being provided with humane medical interven-
tion to end their lives without pain, which is requested by the patients
themselves, their families and with the permission of the doctors.
However, euthanasia is not widely accepted in China today due to the
traditional view of death and the theory of the value of life. Chinese schol-
ars believe that euthanasia is a kind of choice between dying in peace and
dying in pain, and it is also a state and means of being in a good condition
during the dying process (Du and Hui 2003).
Currently in China, neither the Chinese cultural and moral tradition,
social status nor legislation system provides justification for euthanasia. In
particular, the traditional Chinese culture shows that life is to be treasured
and rejects death, which leads the majority of the public to reject euthana-
sia in the modern sense. At present, China has not passed any legislation
on euthanasia; however, it is undergoing an attitude change from cautious
opposition in the earlier debate to the current active advocating of eutha-
nasia legislation by some social groups. The strict distinction between
medical futility and euthanasia, as well as a rigorous procedure, is still
being explored.
Several cases of euthanasia have happened since the 1980s, all of which
were suicide with medication or other means with the assistance of the
patients’ families who could not bear to see the patients with incurable
disease suffering in pain. However, all those involved have been prose-
cuted for their criminal liabilities.
Although active euthanasia is illegal in China, passive euthanasia has
been practiced in many places. Research on the death of patients with
critical care in some hospitals showed that 20% of the total deaths
happened after passive euthanasia.
The Hanzhong Case in 1986 triggered a lively discussion of euthanasia,
and it was the first case where the doctor was considered innocent of
providing euthanasia.
In April 1987, during the conference of China’s Sixth National People’s
Congress, Wang Qun and 31 representatives proposed Proposition 101,
suggesting legislation for the Euthanasia Ordinance, which brought the
issue of euthanasia legislation for the first time into the agenda for legis-
lature. Since 1992, the National People’s Congress has received proposals
on euthanasia legislation annually, and in 1998, the research group led by
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Zhu Shina of Shandong University of Traditional Chinese Medicine

developed a draft proposal, “Provisional Regulations on Euthanasia”. This
was a significant progress and great achievement for euthanasia legisla-
tion. As mentioned earlier, although euthanasia is still a controversial
issue in China, passive euthanasia has been practiced secretly and quietly
in some cities such as Shanghai for a long time. However, the concept of
euthanasia is not acceptable under Chinese law and medical institutions in
China have not officially approved passive euthanasia.
In the case of futile medicine, palliative care is a special service given
when there is no reasonable hope of cure and treatment does not provide
any benefit, but may waste medical resources and do harm or even be
against the dignity of patients. Such services include medical care, nursing,
psychological and social care, which aim to control the symptoms, relieve
the pains and promote the quality of life, and respect the life. It is compre-
hensive humane care for terminal patients (Wang and Li 2005). As Meng
(2011) says, both euthanasia and hospice care in the case of futile medi-
cine aim to make the dying process more comfortable and peaceful, and
to relieve the pain and suffering. Both have the same goals of relieving the
psychological and physical pain of terminal patients at the end of their
lives. However, the concepts of euthanasia and medical futility have dif-
ferent origins, and there is a difference in the means of ending life and the
attitudes toward death. Euthanasia emphasizes the dignity of death, but
futile medical care or hospice care emphasizes the dignity of life; eutha-
nasia focuses on the painless and fast death of terminal patients suffering
from psychological and physical pain in a short process other than long-
term care. However, providing hospice care when facing futile medicine
involves comprehensive and long-term care for the patient’s body, mind
and spirit with appropriate and supportive care to the end. The implemen-
tation of euthanasia will leave a psychological shadow for patients’ fami-
lies, but hospice care will comfort them while facing medical futility.
A study done by the authors show that among 904 participants
(physicians and nurses), 759 (83.98%) believe that euthanasia and medical
futility are closely related; 316 (35.29%) of them think that the application
of medical futility is in fact passive euthanasia. Only 56 (6.25%) partici-
pants said that these two are unrelated. If withdrawing futile medical care
is considered euthanasia in a broader sense, and euthanasia is taken as the
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176 Chapter Eight
goal and procedure of dealing with futile medical care, the relation
between euthanasia and medical futility should be harmoniously inte-
grated. They should not be considered as contradictions but as similarities
integrating with each other. Our idea is that all terminal patients should be
provided with palliative care or a choice of euthanasia in the case of futile
medicine, only by which hospice care in China can become ideal. In fact,
only by integrating both, can the current public needs be met to the maxi-
mum extent and the brighter prospects of development be realized.
AN EMPIRICAL SURVEY ON ETHICAL ISSUES

IN TERMINAL CARE IN CHINA
In order to provide some empirical data in this chapter about medical futil-
ity in China, and to get a deeper insight into the attitude towards terminal
care in general and medical futility in particular, a quick survey was con-
ducted from November to December in 2011. A questionnaire was sent to
950 healthcare providers in 66 medical and healthcare institutions, using
stratified quota random sampling, in eight cities in different provinces.
These were the municipalities of Beijing, Shanghai, Kunming, Guangzhou,
Chengdu, Changchun, Ningbo and Huzhou. In principle, 30 participants
from each general hospital and nursing home were selected, comprising
15 physicians and 15 nurses; and 10 participants from each community
healthcare center, with five physicians and five nurses. In total, 904
responses were received, the response rate was 95.15%, and the statistical
analysis was done using SPSS 12.0. The questions were designed to
gather some demographic data and to cover five aspects of terminal
care — terminal care ethics and policies, social response to terminal care,
medical futility, hospice care and euthanasia — with 12 categories and 40
entries in total. A qualitative analysis method was employed and the data
was loaded to Epi-data 3.02, and consistency checking and logical correc-
tion was conducted on the data.
Among the participants, 448 (49.61%) were physicians, 439 (48.57%)
were registered nurses and 17 (1.82%) participants were social workers.
Of the 904 participants who responded with their view on legislation
and policy regarding terminal care, 822 (90.36%) said that the Ministry of
Health should stipulate regulation on terminal care, and 741 (81.25%)
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respondents thought that the state government should adopt legislation on

terminal care. Of them, 732 participants believed that a professional
standard and code of conduct should be developed for dealing with medi-
cal futility. Of them, 813 (90.63%) participants considered that providing
terminal care respects life and 85.16% of them believed that the principles
of beneficence, autonomy, non-maleficence and respect for life were the
main ones in providing terminal care. Among the 904 participants, 759
(83.98%) thought that euthanasia and medical futility were closely
related; 316 (35.29%) thought that the application of medical futility was
in fact passive euthanasia; only 56 (6.25%) participants said that these two
were unrelated.
Comparing the results from different hospitals in this survey, we see
that the respondents’ opinions regarding the relation between euthanasia
and medical futility are unevenly distributed based on different cities,
occupations, education levels, ages and working experiences. Of them,
479 (53.26%) responded that in the case of medical futility, a joint deci-
sion by doctors and the patient’s family was necessary and 475 (46.09%)
of the participants believed that the patients should have the right to make
their own decision. However, 198 (21.6%) thought that family members
should make the decision and only 51 (5.6%) believed that physicians
could make a unilateral decision regarding futile medicine.
In this study, participants from various professions shared the same
view that in the case of medical futility physician and family members
should make a joint decision. When asked about disclosure of a terminal
diagnosis or changes in the patient’s condition, and who should be notified
first, 735 (81.38%) of participants believed that the patient’s family should
be notified first; 126 (13.93%) participants chose the legal representative
and only 37 (4.04%) participants thought that the patient should be
informed first. Regarding withdrawal of life-sustaining treatment, 630
(69.66%) participants believed that family members should be consulted
first, 406 (44.92%) believed that physicians should communicate this with
the patients, and 142 (15.76%) thought that physicians should tell the
patients directly; only 39 participants said that they preferred not to talk
about it with their patients. When asked for their views on whether
patients with late-stage malignant tumors should be encouraged to accept
the futility decision and the option of palliative care, 742 (82.03%)
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178 Chapter Eight
responded that they would encourage patients to accept the decision.

However, 102 (11.33%) participants expressed that they would not
encourage patients to do so, and the remaining 60 (6.64%) participants
responded that they would consult with their patients.
Regarding advance directives, 366 (40.49%) said that none of their
patients had an advance directive and 437 (48.31%) participants had very
few patients with advance directives.
CONCLUSION
In China, due to the unique cultural background and economic conditions,
terminal care ethics is highlights as a “family culture”. Therefore, based
on the Chinese cultural influence on this issue the authors prefer to discuss
medical futility as part of palliative and hospice care. In this article, to
explore the concept of futile medicine, the Chinese healthcare system, the
ethics of end-of-life care, related legislation and professional codes as
well as euthanasia have been discussed. The paper pointed out a series of
problems in dealing with futile medical care in China.
The results of the empirical survey presented in this chapter showed that
the respondents believed it was necessary to have a legislation to govern
end-of-life issues in general as well as medical futility in particular. The
majority of respondents believed that the ethics of terminal care was
mainly an issue of respect for human dignity and the value of life.
Regarding the decision-making authority, they expressed that decisions
about futile medicine should be a shared decision made by both physician
and the patient’s family. The majority (82.63%) said that they would
encourage their patients with advanced malignancy to accept the futility
decision and receive hospice care. This survey clearly indicates that
healthcare professionals expect the Ministry of Health to develop relevant
guidelines and policies about medical futility.
The paper suggests that providing public and professional education
about death and dying, improving the social security system, supporting
multi-channel financing, reforming the current medical insurance policy
and integrating social volunteer teams are crucial in the better manage-
ment of end-of-life issues in China.
b1545_Ch-08.indd 178 5/27/2013 3:19:15 PM

REFERENCES
Cheng X. 2010. Medical Insurance. Shanghai: Fudan University Press, pp. 261,
282, 296.
Du Z and Hui E. 2003. Medical Ethics Dictionary. Zhengzhou: Zhengzhou
University Press.
Economist Intelligence Unit Report. 2010. The quality of death ranking end-of-
life care across the world. Available at: http://www.eiu.com/site_info.
asp?info_name=quality of death_lien foundation&page= [last visited Dec
20, 2012].
Meng J. 2011. Discussing the harmony and unity of euthanasia and hospice care.
The Chinese Health Service Management 3: 204–206.
Ministry of Health of the People’s Republic of China. 2009. Chinese Health
Statistics Yearbook 2009. Peking: Peking Union Medical College Press.
Shi Y and Wang G. 2009. Palliative Medicine Theory and Life Care Practice.
Shanghai: Shanghai Popular Science Press, pp. 29, 35, 57, 72.
Shi Y and Wang G. 2010. Status and Policy Research of Hospice in Urban China.
Shanghai: Shanghai Science and Technology Education Press, pp. 5–8.
Wang C. 1998. Reflections on the establishment and development of hospice care
with Chinese characteristics. Chinese Medical Ethics 5: 59–62.
Wang P and Li H. 2005. Death and Medical Ethics. Wuhan: Wuhan University
Press.
World Health Organization. 2007. Cancer Control Knowledge into Action: WHO
Guide for Effective Programs. Switzerland: World Health Organization.
World Health Organization. WHO definition of palliative care. Available at:
http://www.who.int/cancer/palliative/definition/en/
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CHAPTER NINE
MEDICAL FUTILITY IN KOREA
Ivo Kwon
SUMMARY
With the aging of the society and the increasing availability of modern
medical practice, end-of-life issues and decisions about medical futility
are becoming a critical problem in Korea. In spite of the big social and
cultural changes in Korean society since the twentieth century, the tradi-
tional culture still has a strong influence on the current practice regard-
ing end-of-life care. Major end-of-life decisions are still frequently
made by the guardian of a patient with the attending physician; however,
the concepts of patient autonomy and advance directives are being intro-
duced in Korea. Withdrawal of life-sustaining treatment from patients in
irreversible conditions based on their own wishes has been legally per-
mitted since the decision by the Supreme Court in 2010. However, active
euthanasia or physician-assisted suicide requested by patients is not
permitted for the time being.
181
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182 Chapter Nine
INTRODUCTION
The Republic of Korea (Korea) has successfully achieved rapid economic
growth as well as political democratization in spite of the sufferings from
the colonial period (1910–1945) and the ruins of the Korean War (1950–
1953). The healthcare system of Korea has also developed amazingly with
its economic growth and technological advancement. Accordingly the life
expectancy and other indices of health of ordinary Koreans are so much
improved in comparison with those of the past. However, as in other parts
of the world, Korea is confronting complicated ethical issues regarding
healthcare in highly advanced clinical settings. The most urgent one is
surely the difficult decision regarding end-of-life care of patients in irre-
versible conditions. In the United States and some Western countries,
respect for the autonomy of the patient plays an important role in this
issue, which is based on their own philosophical perspectives. However,
in Korea, the genuine wish of the patient regarding the end-of-life deci-
sion may sometimes be overridden by the wish or expectation of the
family members who are taking care of the patient (Kim et al. 2009). The
decision is sometimes complicated because of the economic or other kinds
of burden of the family due to the insufficient healthcare benefits provided
by the national health insurance system. The traditional concepts of life
and death from Eastern philosophies and traditional culture overempha-
sizing filial piety also play a key role in this matter. Therefore it is never
easy to answer the question of how to tackle the end-of-life issues in
Korean society. However, it is becoming more and more important to the
healthcare providers as well as patients themselves with the rapid increase
in the aged population and the expansion of intensive care units and the
cases of hospital death. In this article, a brief description of the current
healthcare system of Korea and its implications for end-of-life issues are
discussed. In addition, traditional philosophies such as Confucianism,
Taoism, and Buddhism and their influences on current debates regarding
the issues are also explained. Finally, the current legal and institutional
framework in Korea for dealing with the end of life in general and medical
futility in particular is introduced. The aim of the article is to provide a
short but intensive description of the current situation regarding end-of-life
issues, including medical futility in Korea.
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Medical Futility in Korea 183
GENERAL OVERVIEW OF THE KOREAN HEALTHCARE

SYSTEM
The life expectancy of Korean people who were born in 2009 is 77.0 years
for males and 83.8 years for females. The primary cause of death for
Koreans is cancer, which accounted for 28% of the total number of deaths
in 2008. The next most common causes are cerebro-vascular accident
(11.3%), cardiac disease (8.7%), suicide (5.2%), diabetes (4.2%), chronic
bronchial disease (3.0%), traffic accident (3.0%), liver disease (2.9%),
pneumonia (2.2%), and hypertension (1.9%). The number of deaths due
to cancer rapidly increased (108.6 to 139.5 per 100,000 population) dur-
ing the last 10 years due to the increase in life span of Koreans. In 2010,
246,700 people died, and the major cause of death of 220,000 was chronic
diseases including cancers. The cancers frequently found among Koreans
are stomach cancer, liver cancer, colon cancer, breast cancer, and cervical
cancer (Ministry of Health and Welfare 2011). According to a survey, 55%
of Korean people hope to die at home. However, in 2007, just 60% died
at hospital, while 26% died in their own home. More than two thirds of
Koreans think that they should do their own decision-making regarding
their end-of-life care in the absence of socio-economical burdens on the
family. This decreases to 44.9% if such a burden exists (Yun 2009).
In 2011 there were 313 general hospitals, 1,262 secondary hospitals,
27,027 private clinics, and 777 nursing homes in Korea. The number of
licensed doctors was about 95,000 in 2007. Korea has adopted a dual
healthcare system and practitioners of traditional medicine have national
licenses; their number was about 20,000 in 2010. The number of licensed
nurses was about 230,000 in 2008 (Ministry of Health and Welfare 2011).
The number of institutes specializing in hospice and palliative medicine
was 43; however, the rate of use of the institutes among terminal cancer
patients was only 9% according to the report of the Bioethics Policy
Research Center (BPRC 2010). The government revised the Cancer
Management Act in 2010, which loosened the qualification for palliative
medicine centers to include traditional medicine practitioners and their
institutes. But most designated institutes for palliative medicine are tertiary
hospitals which run specialized cancer wards or cancer centers and special-
ized hospice centers. A number of hospice centers were also established
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184 Chapter Nine
for religious and missionary purposes. The Roman Catholic Church ini-
tially began to build up its own hospice centers, and Protestants and
Buddhist groups have followed in providing their believers with spiritual
services in terminal care.
The gross national income per capita for 2009 was 17,175 USD. The
whole national healthcare expenditure was about 60 billion USD in 2007,
which took 6.80% of GDP. The rate of public support (by National Health
Insurance) of the whole healthcare expenditure which includes the cost of
health promotion and other items was 54.9%, and the expense for health-
care per capita was 1,688 USD in 2007. In 2009, 73.5% of the total pay-
ment for healthcare was covered by the National Health Insurance
Corporation (NHIC) and 26.5% was paid for by the patients themselves
(NHIC 2011). The national health insurance system has been employed
since 1989 so that all Koreans can benefit from it. The Medical Insurance
Act was stipulated as early as 1963, but the implementation was delayed
to 1977 due to the lack of a sufficient budget. In 1977 workplace-based
medical insurance was introduced to workplaces with more than 500
employees. It was expanded to smaller workplaces in 1981 and 1988. The
community-based medical insurance system, which was introduced in
1981 to certain rural regions, was expanded to the whole country in 1989.
In 1998, the NHIC was launched by integrating the workplace-based and
the community-based medical insurance system.
The NHIC provides health check-up services, cash reimbursement
for pregnancy exams, and insurance benefits. The NHIC employs a
co-payment system where patients should pay 30–60% of the total medi-
cal cost according to the level of healthcare providers that they use (they
pay more in secondary or tertiary institutes than in primary clinics) and the
region of their residency (they pay more in municipal areas than in rural
regions). The average monthly charge per person for the NHIC is about 30
USD. The NHIC collected about 33 billion USD from the insured and
spent about 34 billion USD (a negative balance of 1 billion USD) in 2010.
But the NHIC covered a part of the total medical cost. The total amount of
healthcare expenditure in Korea was 77 billion USD in 2010, and it has
been rising rapidly. The gap between the total healthcare cost and NHIC
expenditure is filled by various private insurances and the patients’ own
money. In particular the healthcare cost for old people (over 65 years old)
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has been rising more rapidly and the portion of the NHIC expenditure on
such people is 32% and it has doubled since 2004 (NHIC 2011). In sum-
mary, Korea is running a kind of universal health insurance system, but its
benefits are insufficient to cover all the necessary healthcare costs.
Therefore many Koreans will suffer from the burden of healthcare costs
especially in the case of grave diseases. This may distort the decision on
end-of-life care in some cases.
ETHICS AND END-OF-LIFE ISSUES IN KOREA

Major Ethical Traditions
Traditionally Korean people highly praise the value of life in “this
world” in spite of the many sufferings that they are to experience. The
negation of this world is very strange to the Korean mind; the Heaven-
Earth dualism or disrespect for the materialistic world is not found in
Korean thinking. In a famous Korean legend about the origin of the state,
Hwan-Woong, a son of the heavenly god, came to love the Earth and
asked his father to go down to the Earth. He married a young woman
who had been transformed from a bear through a hard initiation test and
fathered a son who became the first king of Korea, Tan-gun. In this story,
we note a belief that this world is good enough to attract even heavenly
beings, and human life is so precious that even animals want to get it.
Although Korean people have experienced many invasions by foreign
powers, civil wars, famines, and harsh exploitation by the ruling classes
through history, the positive attitude and favor for this world has never
left the Korean mind. Even in Buddhism, which principally negates the
profane values of this world, Korean people created a new sect which is
to serve the security and happiness of the human community. Famous
Buddhist master Won-Gwang taught five lessons to a warrior group of
young nobility of the Silla dynasty (57 BC to AD 935) 1,500 years ago,
one of which was “don’t kill for an unjustifiable reason”. It was different
from the teaching of “never kill” preached by other sects. Korean
Buddhism is also proud of its tradition of a “monk army” who fought
against foreign invaders with fatal weapons. It does not mean that
Korean Buddhism permits violence widely. On the contrary, it requires
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186 Chapter Nine
the use of physical violence to be minimized when possible. Together

with the concept of in (仁) of Confucianism, it has made the Korean
people extremely cautious in taking the life of a human being. Private
violence has been strictly banned and murderers should be executed.
Even the execution of vicious criminals was prudently permitted only
after the review of the king himself. Even a king could not take the life
of his people arbitrarily. Another attitude of Buddhism to death is aloof-
ness. Buddhists see life and death as different aspects of one being, with
the belief in metempsychosis and karma. The acts conducted in this
world will influence the next life, which is due to the logical chain of
relationships of every being. In this teaching, there is no room for any
transcendental supreme being who presides over the destiny of beings.
Besides Buddhism, which was introduced into Korea during AD 3–4,
the Korean mind has also been influenced by shamanism, Confucianism,
and Taoism. Shamanism is a very old spiritual legacy from the prehistoric
era, and other spiritual traditions came from China and India during the
period of ancient kingdoms. The goal of shamanism is to look after the
welfare of the people in this world through the mediation of a special
person (shaman) with the spiritual beings in that world. The spiritual
beings may be the spirits of ancestors, great people, noble animals, or
majestic natural phenomena such as high mountains or big rivers. The
mission of a shaman is interpreting the will and the revelation of spiritual
beings and praying for them to drive off evil and bad things for the welfare
of human fellows. Healing patients is one of the major missions of a sha-
man and shamans served in public hospitals as caregivers with Buddhist
monks in ancient times. Health, wealth (with a long life), public honor,
and fecundity are blessings sought by shamanism. There has never been a
concern for the afterlife in shamanism.
Taoism has been mixed with shamanism in Korea in its search for a
long life and health. The original ideal of Taoism preached by Lao-Tsu
negated the splendid but hypocritical lifestyle of highly civilized society,
and praised instead a simple and humble life that follows the way of
nature. However, Taoism was changed into a sort of religion influenced by
various sects believed by folks since the Han Dynasty. Alleged Taoist
masters (道士) claimed that they had found the secret of life through the
investigation of nature. They often wrote prescriptions for diseases and
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physical weakness (especially lack of sexual energy). It was their ideal to

live a life as long as possible in harmony with the order of nature.
Confucianism refuses to mention any supernatural being or phenom-
enon. In Korea, neo-Confucianism — a new interpretation of
Confucianism by Zhu Xi in the twelfth century — was the constructing
principle of the Choson Dynasty (1392–1910). Neo-Confucianists were
rationalists who denied the existence of any irrational or supernatural
beings. Their thoughts and behaviors were based on a very abstract cos-
mic principle called li (理), which is similar to the logos of ancient
Stoicism. The human mind is a representation of li so that it can under-
stand the cosmic principle. The human body itself is a conglomeration
of cosmic energy called ki (氣), produced by the union of father and
mother, and which is dispersed into the universe after death. Human life
is precious since it bears li in its being. From li, filial piety (孝) is derived,
a fundamental principle of the morality of Korean neo-Confucianism.
It is morally wrong to commit suicide or to injure one’s body since such
acts would disrespect the parents and are against the ideal of filial piety.
However, those acts were sometimes permitted or even praised when they
were done for the purpose of the parents, or “bigger parents”, i.e. the
family, clan, or the state. Bearing a child is an obligation to fulfill the
filial piety to the parents or even ancestors. Neo-Confucianists thought
death to be a very natural phenomenon, so a wise man should accept it.
Death without suffering after fulfilling all human duties (learning, work-
ing, and reproduction) has been thought of as both a celebration and a
natural phenomenon. However, the concept of filial piety made it morally
admirable to help the parents live as long as possible. In certain cases,
therefore, a man who lost his parents was blamed as a “sinner” and had
to do penance for his “sin” for some time. On the contrary, people had no
moral obligation regarding the life of their children; their lives could be
sacrificed for the purpose of the whole family. Infanticide was sometimes
practiced when the newborn had some physical defects or “unwanted
gender”, i.e. a girl.
The concepts and customs of neo-Confucianism still have a strong
influence on the daily life of Korean people, especially regarding the
issues of life and death. The unique combination of aloofness and preoc-
cupation with one’s own life in this world, the strong preoccupation with
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188 Chapter Nine
the health and life of one’s own parents (which is actually related to the
concern about one’s own social evaluation for one’s performance of filial
piety), and relative indifference to the life of one’s own child characterize
the attitude of Korean people to the issues of life and death (Han et al.
2004). Of course, Korean people are experiencing many social and cul-
tural changes today with the urbanization and modernization of society.
The value of individual human rights and one’s own autonomy is being
more and more recognized.
Traditional Health Customs and Culture

The way of using healthcare services, which is colored with traditional
practices and customs, is also critical to the understanding of end-of-life
issues in Korea. In traditional medicine, the patient should transfer all
necessary decisions regarding his own care to his guardian, usually the first
son. He had to focus on only “the recovery”, and other issues distracting his
attention from this final goal were considered bad. Mentioning his progno-
sis or saying the word “death” was a serious taboo and should be avoided.
The duty of the guardian was to do his best to care for his ill parent. Very
often, caring for an ill parent was the best practice of filial piety, showing
that the guardian had done everything to accomplish this noble duty.
As diagnoses were so ambiguous and qualified doctors were so rare in
ancient times, “doctor shopping to find a more authoritative one”, “getting
a second opinion”, and “finding a precious medicine” were common.
We find such practices still prevalent today.
Sometimes the guardian is afraid of the parent dying outside the home.
It has been thought that “good death” is dying at home surrounded by fam-
ily and friends without any regret. If death occurred outside the home, the
family had to find the remains of the dead and bury them at the familial
cemetery where the ancestors were buried. Otherwise, the resentment of
the dead was believed to give rise to harm or misfortune to the family. It
must be noted that the concept of feng shui (風水), a belief that the loca-
tion of one’s house or cemetery in the natural environment will have an
influence on one’s and one’s offspring’s fortune in the future, has had a
strong impact on the Korean mind since ancient times. Hence a “good
death at home” and a “good burial” are regarded as very important in
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one’s life. This reluctance towards death outside the home has been used
to justify the request of the family to discharge the terminal patient to his
home. Before the intervention of legal jurisdiction, physicians used this to
justify their decision when a guardian asked them to discharge the termi-
nal patient home for this reason. The concept of a “good death in Korean
style” is also found in other issues of end-of-life care. The traditional
concept requires all the children to witness their parent’s death and the
attending physician should keep the patient’s body “alive” even after he is
already “dead”, to wait for the arrival of all his children. It would be a big
regret for Korean people not to attend their parent’s death. In this context,
neglecting a do-not-attempt-resuscitate order or delaying the time of death
is also required when waiting for all family members to gather.
A “good burial” is another important issue. Injury to the body of the
dead is considered disrespectful to the dead. The body should be buried in
earth without any damage and following the right procedures in order for
the dead to participate in the circulation of the universe. Nowadays, the
number of cremation cases is increasing due to the shortage of cemetery
space, but a burial is still preferred. The concept of feng shui reinforces
such a custom. Autopsy is very rarely done except for legally compromis-
ing cases for it is thought to kill the dead a second time. The number of
organ donations from brain-dead donors is very low compared with that
from living donors in Korea, the reason for which is the hesitation in injur-
ing the body of the dead. Connecting tubes or lines to dying persons
appears insulting and disrespectful for they might damage the integrity of
the body. Fear of an extraordinary life after such treatment could be partly
due to this view.
MEDICAL FUTILITY: ETHICAL GUIDELINES

AND REGULATIONS
Professional Codes of Ethics in Korea
The discussion of end-of-life issues used to be a taboo until the late twen-
tieth century in Korea. Preserving the patient’s life in any condition was
an ethical duty of the physician and the patient’s family. Other arguments
had hardly ever been suggested to criticize this imperative. But in the
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190 Chapter Nine
1990s, with the increase in the elderly population, terminal cancer

patients, and life-sustaining treatments in ICUs of hospitals, the issue of
end-of-life care decisions became an urgent problem that the medical
profession had to confront. The Korean Medical Association (KMA)
revised the old code of ethics in 1997 to include the following phrase: “A
physician should try to relieve the physical and mental sufferings of the
terminal patient and help him accept his death with dignity and in an
affirmative way.” In this code, the acceptance of death “with dignity and
in an affirmative way” was first formulated. This concept was epochal to
the spirit of Korean physicians who had been taught that they had to fight
against disease and death by doing their best. The code of ethics was para-
phrased in the Ethical Guidance for Physicians in 2001. Article 28 of the
Guidance mentioned the request for discharge against medical advice by
the patient himself or his guardian. The article reflected the consequences
of the legal dispute in 1997 where a team of neurosurgeons were accused
of aiding murder by permitting the discharge of a critically ill patient from
the ICU at the request of his wife. In this famous Boramae Hospital case,
the patient finally died and his wife was accused of murder. The wife
and the surgeons were found guilty in the final judgment of the Supreme
Court in 2004 for the reason that the patient could have recovered if not
discharged from the ICU. Disputes between the physician and the guard-
ian of the patient over his discharge (and quitting the treatment) were not
rare in Korean hospitals. The main reason was usually the futility of the
treatment and suffering of the patient, but sometimes it was the eco-
nomic or physical/psychological burden on the guardian and the family.
Article 28 denoted this point and said:
“A physician should respond prudently and appropriately to the request of

withdrawal of the treatment or discharge against the physician’s advice by
the patient himself or his guardian. It may be permitted for the physician to
accept such a request if it is submitted in a written document by the autono-
mous decision of the patient after enough explanation and persuasion, even
when the condition of the patient is critical. It may be also permitted for the
physician to accept such a request by the legal guardian when the patient is
not competent to make a decision because of unconsciousness or other
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grave condition. In such a case, the physician should judge prudently if the
request is in accord with the interest of the patient himself.”
The next article (Article 29) advised the physician to consult the ethics
committees at various levels (hospital, professional society, and the KMA)
for a difficult case. Article 30 dealt with the withdrawal of treatment from
a patient in an irreversible condition. The article permitted the physician
to accept the request of treatment withdrawal from a patient in an irrevers-
ible condition by his own decision or by a legal guardian. The Ethical
Guidance of 2001 was a milestone for the debate on end-of-life issues
among medical professionals in Korea.
In 2002 the Korean Academy of Medical Sciences (KAMS) estab-
lished a “special committee for reviewing ethical guidance for the with-
drawal of life-sustaining treatment from a terminal patient”, which
drafted guidance for the withdrawal of life-sustaining treatment. The
Guidance for Care of Terminal Patients can be summarized in seven
points: (1) The autonomy of the terminal patient should be respected.
(2) The decision of withdrawal of life-sustaining treatment should be
based on the quality of life and best interest of the patient. (3) The judg-
ment about the futility of a certain treatment or procedure should be cau-
tiously made, sometimes after the review of the hospital ethics committee
or physician colleagues. (4) The wish of a patient about a do-not-attempt-
resuscitation order should be respected. (5) Denial of the use of the ICU
to the terminal patient is sometimes ethically permitted. (6) The terminal
patient can be transferred to another institute or his home at his own wish.
(7) The opinion of the hospital ethics committee or other third parties
should be sought when conflicts or debates happen regarding the decision
making. The guidance of the KAMS showed well the complicated situa-
tion surrounding the decision of withdrawal of life-sustaining treatment
from terminal patients in the early twenty-first century: most physicians
did not recognize the concept of patient autonomy; withdrawal of life-
sustaining treatment was often confused with euthanasia, so futile treat-
ments including unnecessary ICU care were frequently applied to
terminal patients at the demand of his family; and a do-not-attempt-
resuscitation order taken from the patient was sometimes neglected at the
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192 Chapter Nine
wish of the family members. The guidance was a first-hand answer to

these confusions in the clinical environment.
The Code of Ethics and the KMA Guidance on Ethics were entirely
revised in 2006 to respond to the rapidly changing social and clinical
environment. The Guidance of 2006 articulated the provisions about
end-of-life issues in detail. Article 16 of the Guidance is about “medical
intervention and its withdrawal from a terminally ill patient”, where a
physician (1) should do his best to relieve the physical and mental suf-
fering of the terminally ill patient, (2) should do his best to allow the
terminally ill patient to accept his death with dignity and in an affirma-
tive way, (3) should not provide the terminally ill patient who is suffer-
ing from uncontrolled pain any artificial and active intervention to
advance the time of death, and (4) should not provide the patient any
information or method helpful for committing suicide. Article 17 per-
mits the physician to accept the requirement of discharge or discontinu-
ance of treatment from the patient himself or his guardian even when
such acts may result in the death of the patient. Article 18 permits the
interruption of medically futile treatments. The last two articles were
meaningful in the clinical environment of Korea where physicians were
legally obliged to provide the best medical care until the end point of
life of patients. Consequently, those two articles clashed with the juridi-
cal view of those days and brought about serious ethical and legal
debates.
Those regulations were still of interest among physicians and legal
experts until the Mother Kim case broke out in 2008. In this case, Mother
Kim, a 76-year-old woman, fell into a persistent vegetative state (PVS)
from brain hypoxic injury and maintained her life connected to an artificial
ventilator. As her state was judged to be irreversible, her family asked the
hospital (Severance Hospital) to withdraw the ventilator treatment but
the hospital denied the request. Her family filed a suit to a local court, and
the local court decided to permit the withdrawal of the ventilator treatment.
The hospital appealed to the High Court, and the final judgment of the
Supreme Court affirmed the permission. The hospital disconnected the
ventilator from Mother Kim, who lived more than six months instead of
getting a withdrawal of futile treatments and finally died in 2010. This case
became a big issue among the mass media and general population, and was
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an epoch in the history of debates about withdrawal of life-sustaining

treatment and euthanasia in Korea.
In 2009, when the legal dispute regarding Mother Kim was going on,
Severance Hospital and Seoul National University Hospital (SNUH)
announced their own guideline (advice) for withdrawal of life-sustaining
treatment in response to the high interest of Korean society. The guideline
of Severance Hospital classified the level of patients who could ask for a
withdrawal of life-sustaining treatment. The first level group is the patient
whose death is imminent from brain death or multiple organ failure. The
practice of autonomy is impossible and unpractical for this group and the
decision of the hospital ethics committee and the consent of the family is
enough for withdrawal. The second level group is the patient suffering
from an irreversible condition and brain injury, relying on ventilator treat-
ment. For this group the wish of the patient is critical for the withdrawal
of life-sustaining treatment, and the consent of the family is also neces-
sary along with the judgment of the hospital ethics committee. The third
group is the patient in an irreversible PVS who maintains voluntary respi-
ration. A court decision is necessary for the withdrawal of life-sustaining
treatment from this group.
The advice of SNUH was similar to that of Severance Hospital as it
classified the patients into four groups and recommended different
approaches according to the level. The advice suggested four basic prin-
ciples in the decision of withdrawal of life-sustaining treatment: (1) More
than two physicians should be involved in the decision of irreversibility of
a patient’s condition. (2) The attending physician should explain suffi-
ciently the interests and harms of therapeutic options employed in the
course of terminal treatment. (3) The patient could deny life-sustaining
treatment by writing an advance directive when he did not want it. (4) The
practice of active euthanasia and physician-assisted suicide must not be
permitted (BPRC 2010).
As those guidelines were individually prepared by different hospitals,
the medical society of Korea felt it necessary to make a unified guideline
for this issue. Therefore, the KMA, KAMS, and the Korean Association
of Hospitals (KAH) established a unified guideline for withdrawal of life-
sustaining treatment in September 2009. The guideline suggested five
principles with regard to the withdrawal: (1) Futile medical treatment
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194 Chapter Nine
could be withdrawn by medical judgment and the request of the patient.

(2) The patient should be provided enough information about his condi-
tion and prognosis and his decision should be respected. (3) The attending
physician should discuss the related issues with the patient and his family
members and must consult with other physicians or the hospital ethics
committee about the medical judgment regarding life-sustaining treat-
ment. (4) The attending physician and medical team should try to provide
appropriate care including hospice care to the patient. (5) Intentional
inducing of the death of the patient or physician-assisted suicide should
be prohibited. The guideline is limited to patients who are in the terminal
stage of dying or in an irreversible PVS. It classifies this group into four
levels according to competence of decision making and survivability with/
without life-sustaining treatment.
This guideline has not been actively used in clinical settings because
most physicians do not fully recognize its utility and rely on customary
practice (Heo 2009). There is another reason that most hospitals don’t
actively run a hospital ethics committee; training of medical personnel and
financial/administrative support are required to overcome the problems.
Juridical Decisions and Social Consensus

The Criminal Law of Korea punishes a person who kills another person
even by the wish or the consent of the victim or helps the victim commit
suicide (Criminal Law, Article 252). In this context, any act shortening a
person’s life, bringing death before the time of natural death, is regarded
as “murder”, and should be punished without any other justifying condi-
tion. Korean jurisdiction generally maintains a very strict position on the
practice of euthanasia, not to say of murder. Therefore the practice of
active euthanasia would be punished even when the motivation is the relief
of an untreatable pain or suffering of the patient. Meanwhile, unintentional
inducing of death during pain control of a patient in an irreversible condi-
tion could be exempt from punishment if informed consent for the proce-
dure is taken. However, withdrawal of life-sustaining treatment from a
patient in an irreversible condition has been subject to hot debates among
lawyers as well as physicians.
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The first legal case of the Boramae Hospital case has already been
mentioned. The patient in this case was not in an irreversible condition, but
rather in the phase of recovery from brain surgery. So the Supreme Court
found the wife and the surgeons guilty. In 2004, a local court found a
father guilty who withdrew ventilator support from his son (and conse-
quently killed him) who was suffering from irreversible paraplegia. In
2008, another father was found guilty who took his son, who was suffering
from Duchenne muscular dystrophy, from the ICU back home and let him
die. However, the court suspended the sentence considering his motiva-
tion. The actual judgment of the court about withdrawal of life-sustaining
treatment from patients in an irreversible condition was made in February
2008 in the Mother Kim case. A local court of Seoul declared that the
meaningless prolongation of life in terminal patients could impair human
dignity, the value of which is confirmed in the Constitution, and the physi-
cian could withdraw life-sustaining treatment from the patient at his own
request. The appeal court affirmed the judgment in 2009 and listed up to
four conditions for withdrawal of life-sustaining treatment: (1) an irrevers-
ible condition in a patient facing imminent death, (2) the serious and rea-
sonable wish of the patient, (3) life-sustaining treatment only contributing
to the delay of death, and (4) practiced only by a physician.
The Supreme Court finally judged the withdrawal of life-sustaining
treatment from patients in an irreversible condition as legal in May 2010.
The reasons are summarized as follows: (1) The enforcement of life-
sustaining treatment for a patient in an irreversible terminal stage of dying
would impair human dignity, so in this exceptional condition, respect for
the wish of the patient would secure human dignity and the right to pursue
happiness as declared in the Constitution. Therefore withdrawal of life-
sustaining treatment could be permitted by the autonomous practice of the
right to decision making on the basis of human dignity and the right to
pursue happiness. In this case, the irreversibility of the condition should be
prudently evaluated by the second opinion of other physicians. (2) Advance
directives could be regarded as the practice of the right to decide even after
the competence of the patient to decide has vanished. The validity of
advance directives should be confirmed by documentation. (3) When
advance directives are absent, the wishes of the patient could be presumed
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196 Chapter Nine
by other objective references, daily communications with family or friends,

response to similar conditions of others, religion, and other factors.
(4) With regard to the irreversibility of the patient’s condition, it is favora-
ble to ask a special committee (e.g. hospital ethics committee) to make the
decision (Kwon and Choi 2009). This judgment was a decisive event to
permit withdrawal of life-sustaining treatment from a patient in an irrevers-
ible condition in Korea. Following the judgment, the Ministry of Health
and Welfare established a special committee to discuss the issue in 2009.
The committee was called the Social Consensus Group for Institutionalization
of Withdrawal of Life-Sustaining Treatment (SCG), and was composed of
public officials, representatives of the National Assembly, representatives
of major religions (Protestants, Buddhists, and Roman Catholics), civil
activists, lawyers, and ethicists. The SCG finally agreed on four core
issues, but confirmed disagreement for two core issues regarding with-
drawal of life-sustaining treatment. The agreed issues are:
1) the subject of withdrawal of life-sustaining treatment (terminal patient

facing imminent death and PVS patient in terminal stage);
2) the scope of procedures that could be withdrawn (extraordinary life-
sustaining treatment such as artificial ventilator);
3) valid advance directives (documentation confirmed after two weeks of
deliberation period);
4) the organization for decision making (hospital ethics committee at
institution level; a National Ethics Committee for end-of-life care
should be established for oversight).
However, the members had different opinions about the issue of pre-
sumption of the wish of the patient and proxy decision making. Major
groups agreed that the issue of presumption and proxy decision making
could be justified on the condition of strict hospital ethics committee
review while minor groups protested that such practice would be abused
by easily giving up human life. For the necessity of legalization of this
issue, 9 of 18 members disagreed (Ministry of Health and Welfare 2010).
The conclusion of the SCG is the official guideline backed up by the
government authority responsible for the issue of withdrawal of life-
sustaining treatment in response to the decision of the Supreme Court.
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In this procedure, advance directives and hospital ethics committees will

play a key role. Therefore the Bioethics Policy Research Center desig-
nated by the Ministry of Health and Welfare of Korea started a public
campaign introducing advance directives to hospitals and patients in 2010.
With the rapid aging of the Korean society, such a campaign drew public
attention among those interested in the issue of comfortable dying (“dying
well”). It is expected that advance directives and hospital ethics commit-
tee reviews will be transferred to the clinical setting in Korea in time.
DECISION-MAKING PROCESS IN THE CASE

OF FUTILE TREATMENT IN KOREA
In Korea, withdrawal of futile treatment from a dying patient is under-
stood as enabling “death with dignity”, which means facing one’s own
death in harmony with the order (way) of nature. Before 1997 when the
Boramae Hospital case broke out, it was an ordinary custom for a physi-
cian to follow the wishes of the guardian, who was usually the spouse or
the first son of the patient in an irreversible condition. If the physician did
not provide necessary information regarding the patient’s condition
frankly, the patient could not help guessing his own condition and his
opinion was consequently neglected. The attending physician generally
only notified the guardian of the current condition and prognosis. It had
been thought cruel for the physician to tell the truth about the prognosis
directly to the patient. The duty of the physician was cheering up the
patient to give him confidence in his recovery. Because talking about
death or the possibility of death had been a taboo, the physician and the
guardian of a patient did not mention it in front of the patient. Therefore
the physician should discuss the medical decision making with the guard-
ian or family member.
Because the NHIC could not fully cover the whole cost for the care, the
patient or guardian had to bear the economic burden relating to the medi-
cal care. If the patient was old, usually he did not have a full income and
was dependent on his guardian (mostly the first son) for his support and
care. In this context, the burden on the family was not small, and the opin-
ion of the family had a priority in medical decision making in the case of
futile care. Physicians often struggled with a conflict of conscience when
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198 Chapter Nine
the guardian asked for discharge or withdrawal of life-sustaining treatment

from a patient who was not yet in the terminal stage, or by contrast, con-
tinuing unnecessary treatments including life-sustaining treatment for a
patient in the terminal stage of dying. The commonest reason for the
former is the economic burden on the family and difficulty of care giving.
In Korea, it is the responsibility or ethical duty of the family to attend to
the patient in hospital. Because of the low payment from the NHIC, hos-
pitals cannot afford to hire enough nurses for providing nursing care. The
shortage of nursing manpower should be compensated for by the family,
mostly women. A daughter or daughter-in-law would usually bear the
burden of caring for the patient. If the patient does not have a daughter or
daughter-in-law, or if the expected female care giver has no time because
of her own job, the family should hire a private nursing aid from their own
budget, which is highly expensive even for a middle-class family. Either
direct care giving or hiring a nursing aid is very burdensome, especially
to the family who has a patient in need of long-term hospitalization.
In that case, the family is easily tempted to give up the patient. In the
Boramae Hospital case, the wife of the patient, who could hardly manage
at home with her own labor and small income, was terrified by the pros-
pect of unlimited care giving to her disabled husband without any social
support. The surgeons denied her request to discharge her husband several
times due to the possibility of his recovery, but finally could not refuse it
any more. In recent times, a number of nursing hospitals have been built
to accommodate patients who need continuous and supportive care at a
modest cost. Still many people feel their ethical responsibility to care for
their old and ill parents.
The other extreme phenomenon in contrast with “easily giving up” is
the insistence on life-sustaining treatment or even other extraordinary
treatments for patients in the terminal stage of dying. As mentioned
before, losing one’s parents is not only the biggest regret (among many
Korean words describing the death of a parent, there is an expression
meaning “the heaven broke down”), but even a source of social blame or
shame for Korean people, especially when he is thought not to have tried
his very best to save the life of his parent. Doing one’s best to care for
one’s ill parent has been regarded as the noblest practice of filial piety,
which is the most important basic principle in Korean morality. In ancient
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times, kings used to award a big prize to the person who was famous for
caring for his ill parent in spite of all the difficulties. Today, a highly
devoted son or a daughter is still praised by society in many ways.
Therefore, some people who can afford to pay all the necessary medical
costs ask the physician to employ all necessary treatments regardless of
their cost to save the life of their parent until the last moment. The concept
of futile treatment will be lost in facing this demand of ostentatious filial
piety, and every possible procedure will be recruited. It is easier for the
physician to follow such a request than the request for discharge. But such
a practice of providing rare and expensive health resources such as ICU
care to this kind of patient impairs the limited national health resources
and uses up resources for other patients with hope of recovery. But the
traditional concept of filial piety and consequently respect for the elderly
prevents the whole society from discussing reasonably this matter.
In both cases — easily giving up and insistence on treatment in hope-
less conditions — the decision making is usually in the hands of the
guardian or the family. The wish of the patient could be easily neglected.
Physicians cannot help playing a passive role as provider of the related
information and following the wish of the guardian except in cases where
a sort of legal dispute, say, accusation of murder, is expected. Sometimes
it is hard to reach an agreement among the family members with regard to
the decision for the patient. It could provoke a conflict among the family
members as well as between the family and the medical team. Therefore
some physicians ask the family to reach a consensus among themselves.
The hospital ethics committee rarely plays an active role in making a deci-
sion regarding end-of-life care except in a few institutes. The reasons are
that (1) most hospitals lack a hospital ethics committee, trained persons,
and other resources for this matter, (2) physicians and other medical per-
sonnel have a poor understanding of hospital ethics committees and lack
the experience for running them, and (3) most importantly, the decision
regarding end-of-life care is considered a very private matter among the
family (Kwon et al. 2010). It is not easy for anyone, even a physician, to
intervene in the process of decision making unless legal issues exist. With
the announcement of the Social Consensus Group on this matter in 2010,
the Ministry of Health and Welfare pushed hospitals to set up and run
hospital ethics committees and support the civil campaign for writing
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200 Chapter Nine
advance directives. These movements are expected to bring about some

change in the current practice.
The guidelines in Korea recommend that the decision making regarding
end-of-life care should involve the patient, the guardian (or family mem-
bers), the physician and medical personnel, and the hospital ethics com-
mittee. The decision should be a dynamic process respecting the patient’s
wishes and accepting the opinions of the concerned parties, which is to be
endorsed by the hospital ethics committee. For this purpose, more experi-
ence in running such ethics committees and more trained experts are
necessary.
MEDICAL FUTILITY AND EUTHANASIA IN KOREA

Koreans highly value the lives of all living creatures on the Earth. Intentional
killing without any justifiable reason has been always considered a serious
sin. Helping people commit suicide for any reason is ethically unacceptable
and can be punished by law. In Korea, neither the practice of euthanasia as
in the Netherlands and Switzerland nor the so-called “death with dignity”
practiced in the state of Oregon will be permitted for the time being. The
recent judgment of the court clarified that the intentional hastening of the
end point of life should never be permitted. This attitude is somewhat
different from that in Japan where a local court listed certain conditions
for euthanasia in 1960s, or that in China where the legalization of active
euthanasia has been recently suggested. The majority of lawyers or
ethicists in Korea do not differentiate active euthanasia from passive
euthanasia in morally and legally meaningful ways (Koh 2009). Regardless
of the means employed, intentional hastening of the end point of life
would not be morally permissible. Interestingly, withdrawal of futile
treatment is acceptable to Korean people even if such act finally results in
the death of the patient (Sun et al. 2009). It is differentiated from passive
euthanasia because the former always presumes an irreversible condition
of the patient in the terminal stage while the latter does not. Therefore
withholding life-sustaining treatment from the patient whose condition is
not irreversible would be regarded as passive euthanasia and punished by
law even though his suffering is severe. Of course there is a way for the
patient to refuse the life-sustaining treatment by his own will and the
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Constitution confirms the right to refuse it. However, for the patient whose
condition is too grave to clarify his own wish it should be admitted that a
wide ambiguous area remains.
Withdrawal of life-sustaining treatment from the patient in an irrevers-
ible condition is understood as enabling “death with dignity” in Korea,
which is different from the usage of the term in the US. “Death with
dignity” in Korea is not associated with hastening the time of death; rather
it means following the natural order of things, free from a low desire to
live. The concept of dignity in this context means to behave in a gracious
way as a human or to be courageously aloof to death. It would harm the
dignity of a person to sustain life in an unnatural and inhumane way by
relying on artificial means such as a ventilator and monitoring system.
Following the natural order of things is an essential virtue of a learned,
enlightened person; he must be aloof to any fear of death and show a calm
and stoic attitude when facing death. “Knowing the time of death” is the
sign of a really virtuous person who has controlled himself and prepared
for his own death throughout his whole life. Therefore advance directives
are often understood among Korean elders as the sign of virtue showing
that the person is ready for death without any fear.
It is sometimes difficult to distinguish between hastening death and not
delaying death in clinical practice. The former would be condemned as
euthanasia while the latter accepted as “death with dignity”. For this
reason, a prudent judgment is really critical and a hospital ethics committee
or other institutions should participate in the judging process.
CONCLUSION
In Korea, with the long life expectancy of the population, availability of
modern medical care such as ICUs as well as nursing facilities, and an
aging population, the issue of end-of-life care is becoming a critical
problem. Although a lot of social and cultural changes are occurring with
the rapid modernization of Korean society since the twentieth century, the
traditional culture and practice still has a strong effect on the current
practice regarding end-of-life care including withdrawal of futile treatment
from the patient in an irreversible condition. Major decisions are still
frequently made by the guardian of a patient with the attending physician;
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202 Chapter Nine
however, the concept of patient autonomy and the practice of advance

directives are being introduced. Withdrawal of life-sustaining treatment
from patients in irreversible conditions based on their own wishes has
been legally permitted since the decision by the Supreme Court in 2010.
However, active euthanasia or physician-assisted suicide only for the
purpose of the best interest or quality of life of a patient has never been
and will not be permitted for the time being. Withdrawal of futile treat-
ment from a dying patient is understood as enabling “death with dignity”
in Korea, which means facing one’s own death in harmony with the order
(way) of nature. In this context, writing advance directives means showing
one’s own virtue in confronting one’s death in a stoic and in a different
way or showing concern over the burden on the family in providing care,
rather than exercising the patient’s own autonomy.
REFERENCES
Bioethics Policy Research Center. 2010. Report on Current Debates and Outlook
of the End of Life Issues. Seoul: BPRC.
Han SS, Um YR, Ahn SH et al. 2004. Nursing Ethics, Second Edition. Seoul:
Korean Nurses Association.
Heo DS. 2009. Patient autonomy and advance directives in Korea. Journal of
Korean Medical Association 52: 865–870.
Kim SY, Kang HH, Koh YS, and Koh SO. 2009. Attitudes and practices of critical
care physicians in end-of-life decisions in Korean intensive care units.
Korean Journal of Medical Ethics 12: 15–28.
Koh Y. 2009. Physician’s role and obligation in the withdrawal of life-sustaining
management. Journal of Korean Medical Association 52: 871–879.
Kwon I and Choi JY. 2009. The current debates and social trends regarding eutha-
nasia and the withdrawal of life sustaining treatment in Korea. Korean
Journal of Medical Ethics 12: 127–142.
Kwon I, Koh YS, Yun YH et al. 2010. A study on the attitudes of the patients, their
family members and physicians toward the treatment withdrawal from the
terminal patients in some general hospitals of Korea. Korean Journal of
Ministry of Health and Welfare. 2010. Final Report of the Social Consensus
Group on the Withdrawal of Life Sustaining Treatment. Available at:
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http://www.mw.go.kr/front/al/sal0301vw.jsp?PAR_MENU_ID=04&MENU_
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Ministry of Health and Welfare. 2011. 100 Statistical Indices in Health and
Social Welfare. Available at: http://stat.mw.go.kr/stat/content/content_view.
jsp?menu_code=MN02040000.
National Health Insurance Corporation. 2011. Major Statistics of NHIC.
Available at: http://www.nhic.or.kr/portal/site/main/menuitem.9046c7b1fca1
aa404bf15151062310a0.
Sun DS, Chun YJ, Lee JH et al. 2009. Recognition of advance directives by
advanced cancer patients and medical doctors in a hospice care ward. The
Korean Journal of Hospice and Palliative Care 12: 20–26.
Yun YH. 2009. Hospice-palliative care and social strategies for improvement of
the quality of end of life. Journal of Korean Medical Association 52:
880–885.
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CHAPTER TEN
MEDICAL FUTILITY FROM THE SWISS

PERSPECTIVE
Tanja Krones and Settimio Monteverde
SUMMARY
In the past three decades, the debate about medical futility became
highly influential in the international bioethics discourse and also in
Switzerland. In our contribution, we comment on the ethical debate from
our perspective and link our observations to the Swiss healthcare sys-
tem. We explain its relevance in two pragmatic situations at the begin-
ning and end of life and compare discussions and practices in the US and
Germany with discussions and practices in Switzerland. Until now, in
the Swiss context decisions about medical futility have taken place pre-
dominantly with regard to treatment decisions for particular patients. We
describe and critically comment on the “Swiss approach” to futility
entailing societal and economic elements of evaluation jointly with a
strong reliance on risk-benefit assessments by individual physicians.
205
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206 Chapter Ten
INTRODUCTION
In writing our contribution, we first thought about what we consider a valu-
able aim of dealing with an important medical ethics issue in a cross-cultural
perspective in general. It not only touches on recent debates on empirical
bioethics (Gabbay et al. 2010; Jecker 2007), but also intercultural and global
bioethics, dealing with fundamental meta-ethical questions such as the
(never-ending and never-solvable) universalism/particularism debate on the
one hand and highly practical clinical and public health issues such as cross-
border migration, global justice or culturally influenced illness perceptions
on the other. Cross-cultural perspectives can both hint at concepts, values
and principles being almost universally shared, and point at “national” and
“cultural” differences in order to scrutinize values hidden in concepts
assumed to be objective or universal, such as medical futility. We decided to
first give a short summary of our own view on the futility debate that first
came up in the US in the late 1980s because we think that the international
bioethics discourse is still very much influenced by US national debates.
We will then give a short overview of the Swiss healthcare system and
describe how the concept of futile treatment is dealt with in our country.
To investigate the (possible) specifics of the “Swiss way” (albeit being
aware of naïve concepts of cultural causal determinants) we chose two
paradigmatic cases/situations at the beginning and end of life, treatment
of premature infants and do-not-resuscitate (DNR) orders and compared
discussions and practices in the US (with regard to premature infants, also
Germany) with the discussions and practices in Switzerland.
We thus try to review international similarities and differences in the
use of the concept of medical futility as an argument to withhold or with-
draw treatments that are not considered to accomplish established pur-
poses or desired outcomes.
The Interplay Between Facts and Values

in the Discussion on Medical Futility
As already stated in our introduction and elsewhere in this book the recent
debate on medical futility started in the US in the late 1980s. Bioethics
was no longer a marginal scientific discipline but had become more influ-
ential not only in the medical field but in the whole societal and political
sphere. Ethical committees, institutional review boards and professional
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Medical Futility from the Swiss Perspective 207
codes ruling ethical conduct were visible signs of an ongoing institution-

alization. Bioethics not only fostered ethical reflection in the field of
medicine, but — through its institutions — it also exercised a form of
power and control over decision- and policymakers (Engelhardt 2007,
p. 118; Gehring 2004, p. 99).
One of the more general impacts of the new academic field was the
awareness of patient autonomy — not only promoting autonomy without
any costs but concomitantly limiting physicians’ influence on medical deci-
sion making. The “new” bioethics replaced the “old Hippocratic” ethic of
“doctor knows best,” of physicians acting in the patient’s best interest,
based only on professional judgments of harms and benefits for the patient.
As most authors today agree (Marco et al. 2000; Bishop et al. 2010;
Feen 2010) the debate on medical futility first was a kind of reaction to
the rapid rise of patient autonomy and to the question of how patient
autonomy is related to clinical judgment. Second, the first phenomena of
resource scarcity in healthcare settings became visible. Technical and
pharmaceutical advances led to increased demand which was contrasted
by limited supply. It appeared necessary to discriminate between an
appropriate use and an unjustified (and therefore futile) use of life-sustain-
ing or -prolonging means (Kuczewski 2004; Schneiderman 2011). The
debate can be considered as an attempt to spell out the limits of weighing
and specifying patients’ autonomy on the one hand and physician-assessed
benefits and harms on the other in the sense of Beauchamp and Childress’s
methodology of dealing with conflicting principles (Beauchamp and
Childress 2009). The question posed was whether there is a limit to what
patients may demand: if there are situations in which the physician, rely-
ing on her professional judgment of the situation, can refuse to provide a
treatment and justify her decision on the futility of the treatment itself or
of the circumstances in which the treatment is given.
During the following years, many attempts were made to define medical
futility, its concept, content and scope. Whereas there is wide agreement
on the definition of a treatment being futile if it does not “serve its pur-
pose”, more specifically if “it cannot benefit the patient” (e.g. Gatter and
Moskop 1995, p. 191), an agreement on what counts as non-beneficial
treatment has not been achieved. All definitions either refer to defining
medical futility via odds (numbers/prognosis of chances) or ends
(observed or prognosticated ends regardless of odds; states that are not
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208 Chapter Ten
considered as justifying the efforts), that is quantitative or qualitative

aspects, which can also be (and are often, especially in practical medical
discussions) combined (Jecker 2007).
Brody and Halevy (1995) reflected upon different futile ends defined as
follows:
• physiologic futility, when there is no physiologic response to treatment,
e.g. no heart action or sufficient blood pressure after resuscitation;
• imminent demise futility, when death in the very near future is
expected, e.g. because of organ failure and no possibility for trans-
plantation or replacement of organ function is given;
• lethal condition futility, when a known illness such as cancer will lead
to near death;
• qualitative futility, when no acceptable quality of life results from
further treatment, e.g. intolerable pain not sufficiently being able to be
treated except by deep palliative sedation.
These four defined ends are ordered from narrower to wider scopes of
what may count as a futile treatment, the narrowest one being physiologic
futility, with no response or possibility of even physiologic reaction, and
the widest one being qualitative futility.
Depending on which ends are endorsed/adopted, life-prolonging treatment
including CPR may be judged to no longer represent a realistic or appropriate
treatment. The authors did not make any ethical judgments on the acceptabil-
ity of these concepts, nor did they consider probabilities: no odds are men-
tioned, all ends are assumed to be certain. Although it is helpful to define the
content, to ignore the odds is unrealistic. We almost never have 100% cer-
tainty in individual cases, not even with regard to physiologic futility.
One of the most oft-cited definitions of medical futility is that of
Schneiderman et al. (1990) which refers to both probabilities and goals.
In their definition a treatment is futile if
a) empirical data suggest a less than 1% chance of success;
b) it merely preserves permanent unconsciousness;
c) it fails to end total dependence on intensive medical care.
Via their definition they criticized both the attempts to define medical
futility as mere physiologic futility and to defend the concept of futility as
a value-free definition (thus asserting that there is no danger of subjective
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bias). For them, to define futility as physiologic futility of organ function

and not as a sensible outcome for patients is also a value judgment.
This definition, although widely used, has also been criticized. One
critique deals with the fact that Schneiderman et al. referred to odds and
ends but did not combine them directly as odds of permanent uncon-
sciousness or of total dependence on intensive medical care. As already
Caplan (1996) has noted, all useful futility judgments contain odds and
ends. Regarding the scope of futility, for those who claim physiologic
futility to be the only defensible concept to widely include demands for
treatment by patients and relatives into the decision-making process (e.g.
Truog 2010) the definition is far too wide (and thus might promote undue
paternalism). For others, this definition seems much too narrow, since it
only focuses on intensive care situations and not, for instance, on situa-
tions of terminally demented or incapacitated patients in nursing homes in
which some treatments such as invasive procedures and operations may be
considered futile (Mols et al. 2011).
However, behind these discussions there is another more or less hidden
agenda at the root of the futility debate: the consideration of cost effective-
ness and just allocation of resources in individual cases. In Beauchamp
and Childress’s (2009) principlist approach to medical ethics, these dimen-
sions represent the fourth principle of justice, besides autonomy, benefi-
cence and non-maleficence. Justice in the distribution of healthcare
resources has almost been neglected in the medical-ethical debates of the
1970s and 1980s. But during the past 20 years major changes occurred:
health economics and comparative effectiveness research called for epide-
miologic study evidence of aggregated utilities of groups of patients to be
considered the most valuable scientific basis for decision making. These
approaches have become influential on the individual and political level.
They are intensively discussed now at the international level (Gutzwiller et al.
2012, p. 10).
Treatment of individual cases is no longer a sphere free of societal
implications. Nowadays, the fair allocation of scarce resources, the prob-
lem of opportunity costs and the pros and cons of implicit bedside ration-
ing are publicly debated. The tension between individual physicians who
allocate resources on the micro level of particular patients and rationing
measures introduced on the macro level of policymakers, insurers and
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210 Chapter Ten
providers is overt. It fuels the recent debate on futility. Today, the question
of futile treatment is no longer only a question of individual prognosis,
risks and benefits in the “intimate” context of the patient-doctor encounter.
Nor is it only an expression of professional bodies to prevent the misuse
of medicine for unrealizable hopes and desires and to restore physicians’
integrity. More and more, the question of futile treatment is linked to the
question of wasting limited healthcare resources.
Table 1 summarizes the main pro and con arguments of a wider physi-
cian-defined concept of futility that are present in the discussion.
As Gatter and Moskop (1995, p. 193) state: “most commentators agree
that proposed definitions of medical futility are appeals to societal consen-
sus on questions of value.” The insight that even the decision of only rely-
ing on the concept of physiologic futility is already a value decision
underlines the necessity to make national differences in concepts of futile
treatment explicit. This may contribute to a more thoughtful, transparent
approach of defining treatments as “not serving their purpose.” Given the
value character of these claims about medical futility, we contend that
these kinds of judgments have an intrinsically moral nature. They are part
of a moral argument, which conclusion (a given treatment should not be
carried out) is valid when supported by factual and moral premises that
are reasonable.
Table 1. Pro and Con Arguments of Physician-Defined Wider Concepts of Futility.
Pro arguments Contra arguments

Physicians must be able to make unilateral Unilateral value judgments of physicians
value judgments on grounds of their in controversial cases may encourage
professional integrity and expertise to medical paternalism and lead to refusal
serve patients best of treatment for certain groups of
people, unduly restricting autonomy
and care
Physicians are responsible for stewardship Empirical studies show different results
of scarce resources and futile treatment regarding success rates of various
is a waste of resources which impedes treatments; an absolute clear definition
efforts to save other patient lives of futile treatment is not easy
Empirical evidence suggests that some No societal consensus exists (also not
treatments have very low success rates among physicians) about appropriate
success rates or valuable treatment goals
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SALIENT FEATURES OF THE SWISS

HEALTHCARE SYSTEM
For about 20 years, the Swiss healthcare system has been subject to
important transitions in response to epidemiological and demographical
challenges also faced by other medically highly developed countries
(OECD/WHO 2011). Since the enactment of the Health Insurance Law in
1996, all residents are obliged to contract and obtain basic insurance
coverage with a health insurance company. The insurance is not related to
occupational status. Therefore, also the unemployed have to pay for it
(Reinhardt 2004).
Together with the tradition of cantonal and municipal autonomies, the
political structure of direct democracy implies a high participation of the
electorate also for healthcare matters. Not only the federal acts concern-
ing transplantation medicine, abortion, human research, reproductive
medicine and public health are submitted to public scrutiny. There are
also comparatively low thresholds to influence ongoing and completed
legislation through a large right of referendum and initiative. Departing
from a basically free market and choice-based system with extensive
executive powers at the cantonal level, these changes consist mainly in
reshaping healthcare policies by redefining, redistributing or transferring
regulative, distributive and executive powers between the main protago-
nists of the Swiss healthcare system (Kocher 2010): the Confederation,
the 26 sovereign cantons, the municipalities, insurers, consumers, providers,
the healthcare workforce, the pharmaceutical and medical technical
industry.
The aim of these changes to the structure of the Swiss healthcare sys-
tem was to meet different healthcare needs for individuals, the population
and society in times of relative healthcare resource scarcity. Within this
framework of fast-changing social conditions for the provision of health-
care, reflections on medical futility are seldom explicitly addressed.
Nevertheless, such reflections can be detected in different domains which
are horizontally and vertically interconnected:
• the level of public healthcare policy and legislation (Health Insurance

Act of 1996 and respective by-laws and amendments, cantonal health-
care law);
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b1545 Medical Futility: A Cross-National Study 28 May 2013 10:57 AM
212 Chapter Ten
• the level of profession-specific evidence-based practice guidelines

(professional bodies such as the Swiss Medical Board);
• the level of professional ethics (guidelines of the Swiss Academy of
Medical Sciences).
Consensus and Controversies

Departing from different standpoints, consensus emerges that — in the
Swiss context of a high-tech, high-quality, high-cost and personnel-
intensive healthcare supply — it is a political, legal and moral imperative
to avoid or reduce any medical treatment under futile conditions (Daley
and Gubb 2007; Oggier 2010). Beyond this consensus there is a funda-
mental disagreement about how the different stakeholders can best
achieve this objective. The following proposals have been discussed
nationwide by professional bodies, political parties and authorities:
• fostering preventive medicine (see OECD/WHO 2011);
• optimizing the interface between federal and cantonal law (Achtermann
and Berset 2006);
• fostering models of managed care by limiting choice of provider (see
Baumberger 2010; after the successful making of the legal initiative,
the statutory introduction of managed care will be submitted to a
popular vote in September 2012);
• fostering a better stratification of risks by enforcing a single statutory
insurance (first rejected by the Swiss electorate in 2007, new legal
initiatives are pending).
Although these approaches do not mutually exclude each other, each of
them has implications for the traditional Swiss healthcare landscape in the
process of reshaping roles, rights and duties of the aforementioned
protagonists.
MEDICAL FUTILITY AT THE BEGINNING AND

END-OF-LIFE IN SWITZERLAND COMPARED
WITH THE UNITED STATES
How decisions are made and treatment limits set with regard to preterm
babies with extremely low birth weight is not only influenced by concepts
b1545_Ch-10.indd 212 5/28/2013 10:50:02 AM

of medical futility (or utility). It is also linked to more general dimensions

such as dignity, limits of “utilitarian arguments” regarding the “value of
life,” the status of embryos and fetuses, and the rights of women and par-
ents to decide for their children and family life — before and after birth.
Yet, how and when limits are set with regard to life-prolonging treatment
of babies born at very low gestational age and weight also serves as an
illustrative example of the underlying concept of medical futility. The
question of “how small is too small” was always linked to all concepts of
futility — from physiologic futility to quality of life futility. As the devel-
opment of treatment of very low birth and gestational age infants shows,
the presumably “objective, physiological” border of futility — defined as
the viability of very preterm children — has moved. Whereas in the 1960s
and 1970s, viability was set at about seven months such as in the famous
Roe et al. v. Wade decision of the US Supreme Court on abortion
(US Supreme Court 1973), and a birth weight under 1,000 g was consid-
ered critical for viability, the limit is now much lower with regard to ges-
tational age and weight. “Miracle babies,” most of them born in the US
but also Germany and other countries (Japan, Romania), survived at a
gestational age of 21+ weeks and less than 300 g. It is also a well-known
fact that rates of survival of preterm infants differ internationally and
across European countries (Zeitlin et al. 2008) and that decisions to forgo
life-sustaining treatment is most often made before patients die, in the
neonatal intensive care unit (NICU) as well as in intensive care units of
adult patients. Thus, although other factors (skills, transportation, preven-
tion and treatment in pregnancy) might contribute to these “hard facts,”
different values are clearly an important influence factor in what counts as
a futile treatment, resulting for instance in decisions not to resuscitate a
child immediately after birth and when to involve parents into the deci-
sion-making process.
The differences are visible both in guidelines and practice. It is not by
chance that some of the youngest and smallest children were born in the
US and Germany. In these countries, guidelines suggest life-prolonging
treatment at a gestational age of 23 weeks or even less (Table 2).
As Table 2 demonstrates, there are not only remarkable differences
with regard to thresholds but also with regard to the inclusion of parents’
values and wishes into the decision-making process.
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214 Chapter Ten
In all three countries, guidelines were recently revised, interestingly

placing less absolute limits regarding thresholds except for the upper limit
of parent involvement in the German guideline, where the best interest
of the child (“non-futility”to”utility” to “best interest of the child”) is
assumed to prevail at 24 0/7 weeks of gestational age.
In Switzerland, the limit of life-prolonging care was set at 23 6/7 weeks
until last year (Berger et al. 2002; Berger et al. 2011). Parents’ involve-
ment remains an important issue but previously was only accepted as a
decisional factor from the 24th gestational week (24 0/7) besides the risk-
benefit evaluation of physicians. Below the gestational age of 23 6/7
weeks only comfort care was considered appropriate, and parents had no
official say with regard to life-prolonging treatment up to this gestational
age.
The new Swiss guidelines entail general first- and second-order risk-
benefit evaluations by physicians. No life-prolonging treatment is offered
Table 2. Guidelines for Forgoing Life-Sustaining Treatment and Involving Family

Members in the Decision.
Parameter US1 Germany2 Switzerland3

Absolute threshold Not given any more 22 0/7 weeks Not 23 0/7 to 23 6/7
of no life-sus- Reference to the absolute, “as a weeks Palliative
taining treatment Nuffield Council rule no care as a rule,
(physicians’ on Bioethics resuscitation” parents’ wishes
decision only) (22 0/7 weeks) included if positive
prognostic factors
prevail
Involvement of From the very 22 0/7 to 23 6/7 24 0/7 to 24 6/7
parents regarding beginning weeks weeks Parents’
life-sustaining Involvement of wishes included
treatment parents’ views and evaluated
Absolute threshold Not given any more 24 0/7 weeks Best 25 0/7 to 25 6/7
of life-sustaining Reference to the interest of the weeks Parents’
treatment Nuffield Council child wishes included
(physicians’ on Bioethics if negative
decision only) (24 0/7 weeks), prognostic factors
parents still involved are prevalent
1. Batton et al. (2009); 2. AWMF (2007); 3. Berger et al. (2011).
b1545_Ch-10.indd 214 5/27/2013 3:19:42 PM

to children below 23 0/7 weeks, which means a shift of several days in the
absolute limit (from 23 6/7 to 23 0/7 weeks) compared to the previous
guidelines. Above 23 0/7 weeks parents are allowed and encouraged to be
part of the decision-making process, but this depends on the first- and
second-order evaluation of physicians. In general, comfort care is pro-
posed until the gestational age of 23 6/7 weeks. Only if there are addi-
tional (“objective”) positive prognostic factors, parents are invited to
decide whether, contrary to the general approach of offering comfort care,
life-prolonging care is appropriate. Parents are further invited to partici-
pate in all decisions for their children if they are born between 24 0/7 and
24 6/7 gestational weeks. In all of these children, intensive care is cau-
tiously offered (“provisional intensive care”), positive and negative prog-
nostic factors are evaluated and decisions made by physicians and parents
in a shared decision-making process. From 25 0/7 weeks onwards, inten-
sive care is a rule and parents are only invited to decide on forgoing life-
prolonging care, if there are (“objective”) negative prognostic factors.
Compared to guidelines from Germany and the US, one can conclude
that the border of medical futility is quantitatively placed later in Switzerland
with regard to viability and futile treatment of very preterm newborns.
The concept of futility is also qualitatively “wider” with regard to both odds
and ends: a qualitative concept of futility according to the definition of
Brody and Halevy (1995) with far wider odds than the definition of
Schneiderman et al. seems to underlie the Swiss concept of futile treatment
of these patients. Remarkably, the decision to forgo life-sustaining treat-
ment of very preterm newborns is clearly defined as a value decision, in
which societal, economical and legal elements are also important criteria.
Excursus: Guidelines as Culturally Embedded

Constructs
Societal or economic factors influencing the process of guideline prepara-
tion are not mentioned in the US and German guidelines. This might be
attributed to the fact that the evaluation of economic factors has always
been an important element of Swiss healthcare policy due to decentralized
patterns of responsibility that reflect the interests of different stakeholders
(Federal Office of Public Health 2005):
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216 Chapter Ten
• the 26 sovereign cantons and their fundamental role in healthcare leg-

islation, execution, governance of supply and demand and monitoring
of costs (the insurance rates for the same coverage being different
from one canton to another);
• the subsidiarity of federal law;
• high deductibles of statutory health insurances for patients and incen-
tives for elective cost containing insurance models (managed care
models like health maintenance organizations);
• the historically transmitted Swiss policy tradition, that holds the citi-
zens’ opinion to be of importance for every aspect of societal life and
therefore to be considered and incorporated in the process of estab-
lishing policies.
Compared to the US guideline, the Swiss guideline relies on wider

(“objective”) utility assessments by the physician. First, it clearly places
more decisional power on professional judgments regarding the decision
to forgo life-sustaining treatment against parents’ wishes for children with
“better” probabilities and likely outcomes. Second, it gives no more limits
and centrally involves parents in every decision. It thus defines even nar-
row physiologic futility (“absolute viability”) as a value-laden decision
where parents are to be involved. The German guideline also only partly
involves parents in the decision-making process compared to the US
guideline, yet the decision-making power of parents is limited in a differ-
ent way: the limit is placed on wishes of parents to forgo life-sustaining
treatment, asserting the general “utility” of life-prolonging treatment at
24 0/7 weeks of gestational age, a time at which the US and Swiss guide-
lines centrally involve parents in an open decision-making process.
For us these “national” and “cultural” differences in defining the viabil-
ity and futility of treatment of very preterm newborns are not random.
They prove our contention that futility has to be seen as a culturally medi-
ated construct that reflects the values that are shared in a particular con-
text. One of the authors (TK) has worked in both Germany and Switzerland
and observed practices in NICUs in each of these countries. In the author’s
personal experience as a clinical ethicist practicing in both Germany and
Switzerland, the practices in NICUs are in fact different with regard to
these borderline cases. In these cases, German physicians tend to be more
optimistic than those in Switzerland. Consequently, parents were
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encouraged to embrace life-prolonging treatment in Germany, whereas

they were more likely to be discouraged from such treatment in similar
cases in Switzerland. The observation that in Switzerland, wider, qualita-
tive concepts of medical futility (still) relying on the physicians’ judg-
ments of risk and benefit exist, is also partly visible in decisions on
end-of-life issues, specifically do-not-resuscitate orders.
Do-Not-Resuscitate Orders in Switzerland

One of the paradigmatic treatments for which medical futility is discussed
is cardiopulmonary resuscitation, which also underlies the widely used
definitions of medical futility by Brody and Halevy (1995) and Schneiderman
et al. (1990), see also Ardagh (2000) and Tomlinson et al. (1990).
First, compared to the US, do-not-resuscitate orders are less routinely
discussed with patients on the one hand, but resuscitation is also routinely
performed in patients with a very low chance of success on the other (for
data and further references see SAMS 2008, Chapter 1.2.1). In Switzerland,
the Swiss Academy of Medical Sciences (SAMS) is in charge of defining
most of the medico-ethical and clinical ethical guidelines, many of them
supported also by other professional bodies such as the Swiss Nurses’
Association. This body of “soft” professional law binds physicians in our
country and can be incorporated into “hard” law through fixed or dynamic
references (cantonal healthcare laws, federal act on organ transplantation
concerning the determination of death). With regard to end-of-life deci-
sions, several important guidelines were published during the last 10 years:
• care of patients at the end of life (SAMS 2004a);
• palliative care (SAMS 2006);
• treatment and care of elderly persons who are in need of care (SAMS
2004b);
• treatment and care of patients with chronic severe brain damage
(SAMS 2003);
• decisions on cardiopulmonary resuscitation (SAMS 2008);
• determination of death in the context of organ transplantation (updated
guideline, SAMS 2011).
All of these guidelines clearly consider transparency of decisions and
autonomy of patients as the most important ethical aspects and principles
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218 Chapter Ten
to consider with regard to end-of-life decisions. In severe brain injuries,

the question whether life-prolonging or palliative care is considered
appropriate is closely linked to the formerly expressed will of the patient.
No defined “physiologic” limit is given with regard to life-prolonging
treatment. If there is no clear advance statement of the patient’s will or if
there is any doubt about it, giving enteral or parenteral food and fluid is
considered as being indicated only in patients who have clinically stable
vital parameters. Measures should be adapted to therapeutic aims defined
together by physicians, patients or their representatives (SAMS 2003).
Resuscitation is not mentioned in the guidelines for treating severely
brain injured or very old care-dependent patients. In the specific guide-
line on resuscitation, however, although the wish of the patient with
regard to resuscitation is considered one of the most important points for
consideration, a limit is given indicating when resuscitation is considered
a futile treatment. If death is expected within days or weeks, resuscitation
is not considered as being indicated. If the prognosis is not that clear and
the life expectancy is considered to comprise several months, the patient’s
values and preferences are incorporated into the decision-making process
clarifying whether resuscitation should be performed or not.
In sum, although the guidelines of the Academy do not exhibit an explicit
discourse on medical futility, they implicitly address the topic for different
clinical contexts. They affirm the basically value-laden character of such
decisions, demand an accurate assessment of the ethical concerns, proce-
dural transparency and the primacy of the patient’s will and interests.
At the same time, the guidelines establish room for reflection on futility
by physicians and other healthcare professionals in charge.
Besides these guidelines, several publications discuss a wider concep-
tion of futile treatment. In an article by a Swiss interdisciplinary research
group in clinical ethics (Mols et al. 2011), the concept of medical futility
is thoroughly discussed with regard to wider concepts. Referring to
a case of operating on a demented, care-dependent patient, futility is
defined as overtreatment also in cases beyond intensive care units contrary
to Schneiderman et al.’s definition, but leaves open the question about a
due “baseline” treatment. Departing from these situations over- and under-
treatment can be described. Compared to the debate in the US, again there
seems to be a tendency to adopt wider discretional boundaries within the
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Swiss healthcare system, in setting limits on treatments identified as “not

being indicated”. Although highly criticized, the American Heart
Association (see Marco et al. 2000) defends a concept of physiologic futil-
ity with regard to resuscitation. It is considered futile if
a) no survivors have been reported in well-designed studies in given

circumstances;
b) basic and advanced life support have been provided without success;
c) no physiological benefit can be expected through performing
resuscitation.
Not all American physician associations are that restrictive with regard to
setting limits for indicated treatments; some define medical futility as a
treatment being “highly unlikely” to result in meaningful survival such as
the American College of Chest Physicians (1990). But recent debates such
as the one initiated by Truog (2010) on performing resuscitation in chil-
dren even in clearly futile situations, if parents request CPR, for the pur-
pose of comforting parents and if resuscitative interventions are not
harmful, suggest that cultural differences seem to exist also with regard to
rationales for performing CPR (Truog et al. 1992; Paris et al. 2010).
Again, in Switzerland, as compared to the US, when the patient’s pref-
erences or interests cannot be clearly established, physicians tend to take
the task of setting limits on life-sustaining treatment, concomitantly and
implicitly limiting patients’ or parents’ autonomy by establishing what
futility means in a given situation (for qualitative data in the critical care
setting see Albisser et al. 2008).
The Case of Non-Heart-Beating Organ Donation

Very recently, non-heart-beating donation (NHBD) of organs, which was
first performed in Switzerland 10 years ago, became possible and was
re-initiated in two centers (Zurich and Geneva) due to juridical changes that
consisted in an alignment of the Swiss transplantation law and the guidelines
of the Academy (SAMS 2011). NHBD is defined via the Maastricht catego-
ries, the first and the second referring to unsuccessful (attempts) or useless
(heart stopping in brain-dead patients) resuscitation, the third category
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220 Chapter Ten
referring to decisions to forgo life-sustaining treatment in severely ill

patients, touching a wider concept of medical futility (Beyeler et al. 2009).
When the decision is made, life-sustaining treatments (for example ventila-
tor, drugs sustaining circulation such as adrenaline) are withdrawn. If the
patient dies within a given time (as a prerequisite that organs can be taken)
and death proven by verification of cardiac arrest, organs are retrieved.
Often, patients who become eligible for non-heart-beating donation suffer
from severe brain injuries. We know that rates, policies and procedures to
perform NHBD differ worldwide (Bernat et al. 2006; Rady et al. 2010).
These differences do not constitute a mere technical problem. They reflect
fundamental uncertainties about a judgment of medical futility, predomi-
nantly in view of the consequences: undoubtedly, continuing life support in
these patients would be medically futile. But immediately after declaring
them dead by traditional cardiopulmonary criteria, vital organ extraction is
performed.
For these reasons, whereas many countries have introduced NHBD
programs, some countries such as Germany do not allow NHBD. They
fear a slippery slope may develop by withdrawing a life-sustaining therapy
considered futile, and declare death in compliance with the dead donor
rule and retrieve organs. Although the guidelines of the SAMS impose a
“hopeless prognosis” as a necessary condition for patients under this
protocol and no capability for survival without a high support of vital
functions (SAMS 2011, p. 14), this again sets up a discretional space,
hinting at culturally or nationally influenced definitions of medical futility.
More research on which situations are considered “futile enough” to forgo
treatment and perform NHBD in Maastricht category III might further
illuminate the different values behind presumable objective definitions of
medically futile treatment.
THE “SWISS APPROACH” TO THE FUTILITY DEBATE

Value judgments are indispensable to scientific practices such as defining
research questions, making assumptions, setting significant thresholds, or
balancing between the advantages and disadvantages of different method-
ologies. Scientific knowledge cannot be value free, but this does not make
it any less scientific (Petrova et al. 2006, p. 705).
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The “Swiss approach” to medical futility (if there is anything such as

a national way) is by no means a uniform one. Economic constraints
make it necessary to contain healthcare expenditures. The measures taken
to reach cost containment are situated in a web of the political, the profes-
sional, the insurer, and the autonomy of the insured as well as provider.
All these measures constitute the framework, in which empirical evidence
and values are dealt with and moral arguments underlying statements
about medical futility are constructed. Once a treatment is considered
medically futile under certain conditions, there is no moral obligation to
offer it — even at the patient’s request or for other than medically
accepted reasons. This is what we mean by the moral nature of futility
judgments.
In Switzerland, there is a shift towards increased federal regulation, first
inaugurated in 1994 through the enactment of the Health Insurance Law.
Article 32 gives a statutory basis to the principles of cost-effectiveness,
efficacy and usefulness (Swiss Confederation 2012). With this taxonomy,
a conceptual foundation for a nationwide discourse about medical futility
has been laid, even though from the narrow viewpoint of the coverage
of costs.
In contrast to the origins of the futility debate mentioned earlier in the
US, the role of patient autonomy in shaping allocation policies in the case
of presumed futility remains unclear. Since the enactment of the Health
Insurance Law, different cases about the refusal of insurers or the state to
pay interventions deemed medically futile have drawn public attention. In
one case that has recently come up before the Federal Supreme Court — the
Myozyme™ case — concerning the so-called off-label use of an “orphan
drug”, the Court ruled that the insurer was not obliged to cover the yearly
costs of about 500,000 Swiss francs (545,000 USD). The reasons were,
first, that the treatment does not have a substantial therapeutic benefit, and
second, the question of cost-effectiveness (for a detailed description see
Kesselring 2011).
These days, insurers, providers, patients and the public are involved in
an ongoing process of reshaping healthcare policies by promoting patient
responsibility through economic incentives, proposing options of managed
care and new prospective payment systems for hospitalized patients
(Swiss-DRG). Within these transitions, not only the reliability and validity
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222 Chapter Ten
of the concept of medical futility plays a crucial role, but also the way of
communicating futility judgments to those individuals who are directly
affected by these decisions.
CONCLUSION
Until now, in the Swiss context decisions about medical futility have taken
place predominantly with regard to treatment decisions for particular
patients. A qualitative, wide concept of medical futility prevails, entailing
societal and economic elements of evaluation jointly with a strong reli-
ance on risk-benefit assessments by individual physicians. As mentioned
earlier, for compelling reasons of justice and ethical sustainability they
have to be justified also at a meso and macro level, shaping the range of
therapeutic decision-making discretion with accepted moral standards of
the healthcare professionals as expressed in the guidelines of the Swiss
Academy of Medical Sciences and/or the Swiss Nurses’ Association.
It is the substantially moral nature of medical futility judgments which
imposes accountability on the criteria adopted and the decisions taken.
The characteristic “Swiss way” of reaching this goal — through demo-
cratic participation and legitimation — may not be the easiest way but is
surely the most preferable when accompanied by measures of public
information and education.
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CHAPTER ELEVEN
MEDICAL FUTILITY IN TURKEY
Berna Arda and Ahmet Acıduman
SUMMARY
As a country located between Asia and Europe, Turkey is both a Balkan

and a Middle Eastern country, and is of both Black Sea and Mediterranean
origin. Its culture is based on both Eastern and Western thought. It is an
inheritor of both antique and Islamic civilisations. For that reason it
represents a blended and multidimensional identity. This chapter is
devoted to the concept of medical futility in Turkey from the point of
view of medical law and bioethics. Against this background, the health-
care system in Turkey, healthcare payment system, ethics in end-of-life
care in the country, medical futility concept in Turkey, relevant legisla-
tion, and the decision-making process are elaborated.
227
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228 Chapter Eleven
INTRODUCTION
Futility (futile medical care) is when a certain diagnosis or treatment is
lacking beneficial results. The benefit referred to in this definition indi-
cates benefits such as extending lifespan, reducing pain, and enabling
comfort. Futile treatment can be considered if the intervention does not
produce the desired physiological effect, the patient is going to die in the
near future even if the intervention is carried out, there is a terminal condi-
tion etiologically and the planned intervention will not resolve the said
condition, or the intervention does not help to increase the quality of life
to the desired level (Kopelman 1995).
The basic conditions required to discuss medical futility in terms of
bioethics are defined as a value judgement that falls on the thin line
between useful and useless with a physical, psychological, or economic
burden.
This article elaborates how futility, at a basic level, is perceived in
Turkey, whether there are legal regulations in force regarding the subject,
and how and by whom decisions are made in practice. First, this chapter
explains the healthcare system and the ethical approach to death in Turkey
in order to set a background regarding the subject.
THE HEALTHCARE SYSTEM IN TURKEY

Turkey is a country with a population of 72.5 million (a rural popula-
tion ratio of 25.0%, an urban population ratio of 75.0%, a 0–14 aged
population ratio of 26.3%, and a 65 and 65+ aged population ratio of
6.8%), a national income per person of 8,590 USD, and a per capita
public and private health expenditure of 814 USD. Health-related
figures illustrate that the life expectancy at birth is 73.6 (75.8 female,
71.4 male), the infant mortality rate is 17.0 (per 1,000 live births), there
are 1,350 hospitals (847 state hospitals, 400 private hospitals), and the
number of health personnel per 1,000 population is 0.89 physicians,
0.61 midwives, 0.98 nurses, and 0.28 dentists (T.C. Sağlık Bakanlığı
2010).
The history of the healthcare system in the Republic of Turkey can be
analysed in three periods:
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Medical Futility in Turkey 229
1) The Foundation and Institutionalisation Period (1923–1960): Health

services were established for the first time, and spread nationwide.
2) The Socialisation Period (1961–1979): Health services were a funda-
mental task conducted by the government, with the understanding that
health services were a “right.”
3) The Liberal Period (1980–2010): A part of the health services’ public
nature was abandoned and privatised (Arda and Güvercin 2010).
Healthcare was among the priorities set by Mustafa Kemal Atatürk,

the founder of the Republic of Turkey. This is why one of the first laws
issued by the Turkish Grand National Assembly, founded on 23 April
1920, during the years of the Turkish War of Independence, was the law
to establish the Ministry of Health. With this law, health services were
accepted as a public service conducted by a ministry of the state. After
founding a republic, the objective was to establish and organise health
services in a country that wars had destroyed, spread the healthcare
throughout the country, and institutionalise it. Health was important as it
was the key to achieving sufficient manpower in terms of quality and
quantity. During this period, almost 50 laws, still in force today, were
adopted between 1923 and 1937 by Dr. Refik Saydam, the Minister of
Health at the time. The primary objectives during this period were “cen-
tral planning and exclusive structuring and organizing of the preventive
and therapeutic health services as separate departments, filling the gap
in health care personnel at the earliest possible time, and fighting against
epidemic infectious diseases such as malaria, tuberculosis, trachoma,
leprosy, and syphilis.” Organisations providing health services were
structured based on a vertical organisation model. The government built
diagnosis and treatment centres and physicians were not allowed to have
private practices. Primary healthcare services were popularised and
health expenses were financed from the general budget. Treatment ser-
vices provided to inpatients were also financed by public funds; how-
ever, it was adopted that these services were managed by local authorities.
The purpose of the 10-Year Health Plan, established in 1946, was to
integrate preventive and therapeutic health services, and spread them
nationwide.
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230 Chapter Eleven
Law No. 224, adopted in 1961, initiated the “socialisation” period

of health services; it was the biggest breakthrough in health, in the
history of the country, up until that date. Healthy living was accepted
as a birth right, and the government was appointed to do everything
required within the context of this right. It was seen appropriate that
the general budget financed healthcare services, and everybody should
be included in the social security system. The health service should be
based on the following characteristics: to comply with the principle of
social justice and equality, to be population-based with priority given
to preventive medicine, a team service with a referral system, public
access, free of charge, as well as having collaboration with industries
(Arda 2010).
The basic principles of socialisation comply with international regula-
tions and views regarding health organisations. In order to establish public
health at the international level, the socialisation law was established
before the Alma-Ata Manifesto in 1978, which published and formulated
Basic Health Services, the Health for Everyone in 2000 objectives in
1984, defined for Europe, and the Health 21 objectives, established in
1998, and played a significant role in establishing these principles. This
law placed priority and importance on free service at health centres, inte-
grated service for primary, secondary, and tertiary care, team services,
population-based service, and preventive health services. This also set
forth plans for mobile health services, ongoing training for personnel,
community participation, inter-sector collaboration, a referral system, and
all-day service.
Even though socialising healthcare services significantly improved the
country’s health index, such as reducing the infant mortality and maternal
mortality rates, and preventing infectious diseases, it was not able to
achieve the generalisation of nationwide healthcare services due to insuf-
ficient support and funds.
The military coup in Turkey in 1980 gave rise to a change in the nature
of healthcare services, and the state started to abandon their fundamental
duty in providing healthcare services. Health services started to lose their
public nature, especially due to the effect of international financial organi-
sations such as the World Bank and IMF, in the name of “reform in health-
care,” and health services started to become a commodity offered to the
b1545_Ch-11.indd 230 5/27/2013 3:19:55 PM

market under free market conditions. During this period, in which general
economic indicators deteriorated (for example, inflation reached 115%),
the budget put aside for health decreased, public health investments nearly
came to a standstill, and wages of healthcare staff were reduced. As a
result, health services deteriorated in terms of quality and quantity, and the
need arose for liberal adjustments in the health sector.
In line with privatisation activities, there was an increase in the share
the private sector held within health services from 1990 onwards and the
private sector grew even more with finance from public resources. In the
2000s, primary healthcare services started to be provided by “family prac-
tices,” an examination-based system, instead of health centres which
called the Health Transformation Programme. These circumstances indi-
cated that preventive medicine was put on the back burner in health ser-
vices, while therapeutic medicine took priority. Hospitals started to be
converted into “businesses,” and were privatised. The system was financed
by premiums deducted from employees in the name of general health
insurance. Public health expenses multiplied by four between 2002 and
2009 together with the transformation in the healthcare system. The main
reason behind this increase was medical technology and drug costs. There
were significant doubts as to whether or not the system could be sustained
under such conditions.
After establishing the Republic of Turkey, the main objective was for
the state to build a healthcare system and to generalise healthcare services
throughout the country. The socialisation period in particular was a con-
temporary stage in which the aim was to make sure everybody’s right to
health was under constitutional guarantee and healthcare was accessible,
free of charge, and high in quality. However, healthcare services started to
be privatised during the liberal period. According to the Turkish Medical
Association, this model is expensive and therapeutic, as opposed to pre-
ventive. In addition, the system does not take rural areas into considera-
tion, causes competitiveness among doctors that is unethical, limits
healthcare for chronic patients, disrupts the referral system, and hinders
programmes such as vaccination and family planning. The Health
Transformation Programme, which represents this era, continues to be
questioned by the public, although it has become a significant part of
practice, and made a place for itself (Arda 2010).
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232 Chapter Eleven
The Payment System in Healthcare

In Turkey, the term “general health insurance,” stated in the Social
Security and General Health Insurance Law (No. 5510, on 31 May 2006),
refers to primarily protecting the health of individuals, and financing
expenses incurred in the event that individuals are faced with health risks.
In accordance with this law, benefiting from healthcare services and other
rights offered by general health insurance is a right for those insured and
their dependants, and the insurance organisation is obliged to generate the
funds required to provide this service and right. The following are some
of the healthcare services that are financed by the organisation:
a) Preventive healthcare services for individuals regardless of whether

they are ill or not, and preventive healthcare services directed to pre-
vent drug addiction that is harmful for individuals.
b) Health services and emergency health services required by inpatients
or outpatients, clinical examinations deemed necessary by a doctor for
diagnosis, laboratory investigations and other diagnostic methods,
medical interventions and treatment conducted in accordance with
diagnosis, patient follow-up and rehabilitation services, organ, tissue
and stem cell transplants, and cell therapy.
c) For pregnant women, inpatient or outpatient, clinical examinations
deemed necessary by a doctor for diagnosis, delivery, laboratory
investigations, tests and other diagnostic methods, medical interven-
tions and treatment conducted in accordance with diagnosis, patient
follow-up, medical abortion, medical sterilisation, and emergency
healthcare services.
d) For inpatients or outpatients, oral and dental examinations deemed
necessary to diagnose oral and dental diseases, laboratory investiga-
tions, diagnosis-based medical interventions, and treatments.
e) A married woman with no child, or the spouse of a man with no child
can benefit from assisted reproductive methods under their general
health insurance. However, in order to qualify there are certain crite-
ria that need to be met, and in the event that no other treatment
method is possible, and the procedure is seen as the only option,
assisted reproductive methods are offered, but the treatment is limited
to two tries.
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f) Services related to the health services offered in accordance with the

items stated above: blood and blood products, bone marrow, vaccina-
tions, medications, orthesis, prosthesis, medical instruments, individual-
specific medical devices, medical consumables, providing, installing
and repairing medical consumables, including post-guarantee mainte-
nance, repair and replacement services.
The following are health services that will not be financed by the insur-
ance organisation:
a) Any form of aesthetic-based health services that are not covered under
health services conducted to reinstate physical integrity, and circum-
stances that arise due to occupational accidents, occupational illnesses
or congenital reasons.
b) Health services not licensed or approved by the Ministry of Health,
and health services not accepted as medical health services by the
Ministry of Health.
c) For foreign citizens, health services for chronic diseases that are pre-
sent before the date they become insured or a dependant of the
insured, under general health insurance.
The following are cases in which a contribution will be requested from

health services:
a) Doctor and dentist examinations for outpatients.

b) In vitro orthesis and prosthesis.
c) Medication of outpatients.
d) Financed health services for inpatients in accordance with patient
groups determined by the organisation.
The following are cases in which a contribution will not be requested

from health services:
a) Health services provided for work accidents, occupational illnesses,

and during military operation and manoeuvres.
b) Health services provided in the event of disasters and war.
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234 Chapter Eleven
c) Family practice and preventive health services for individuals.

d) Health services for chronic diseases determined by the organisation,
vital health services, and organ, tissue and stem cell transplants, pro-
vided that circumstances are documented with a health report.
e) Check-ups, etc. (Sosyal Sigortalar ve Genel Sağlık Sigortası Kanunu
2011).
ETHICS IN END-OF-LIFE CARE IN TURKEY

Nowadays, medical ethics are developing in a totally different direction
from traditional approaches. This new direction tends to consider patient
rights in a doctor-patient relationship, and initiate patient autonomy. In
this respect, medical practice is dominated by an approach that takes
patient wishes into account.
The most important point that comes up when the state of elderly
patients are examined in the light of medical ethics is where elderly
patients stand when distributing limited resources in daily medical prac-
tice. How can we assess geriatric care for the elderly population in terms
of medical ethics? The question is when it is justified to use scarce
resources at the end of life, for whom, and for what purpose. How we can
discuss these issues but not discriminate against this group of patients?
One of the important issues touched upon regarding treatment costs in
medical practice is treatment based solely on using high technology medi-
cine. In this respect, whether or not it is necessary to provide elderly
patients with medical interventions that are based on high technology and
are extremely expensive has become a topic that is constantly questioned
in terms of ethics. The pivotal point of this argument is whether or not it
is more realistic to direct expensive treatment toward younger patients for
satisfying results, or “waste” it on elderly patients, who do not have many
years left to live. However, one should be aware that depriving patients of
medical opportunities because of their age creates a slippery slope from
which ill thoughts and approaches can arise.
In Turkey, there are no legal guidelines stating conditions under which
treatment should be stopped, what the medical criteria are to determine
such a condition, who should make such a decision, and the process they
need to follow.
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In terms of dealing with a request to end someone’s life at the end of

life in Turkey, euthanasia is not an option for example for a 60 year old
with a brain tumour suffering severe pain, whose quality of life is accepted
to be intolerable. Any intervention that directly affects an individual’s life
is not accepted by law.
For a different age group, for example a six year old with advanced
cancer, there is nothing in the regulations that allows parents to withdraw
treatment. In the event that parents refuse further treatment, doctors and
family members can make a decision together. Every sort of intervention
is carried out in order to treat a newborn that requires ventilation support
for 23 weeks, without seeking family approval. It is very rare that a treat-
ment team will discuss the request of a 13-year-old patient refusing treat-
ment, when their family request that they are treated, and decide to
discharge them (Platin 2007).
Another important issue when dealing with the aged population and
ethics of end of life is the autonomy of elderly patients. From this point of
view, we can say that elderly people are in a similar situation to that of
special groups that have difficulties exercising their autonomy, such as
children, psychiatric patients, and prisoners. This helps us to understand
why elderly people are considered to be one of the special groups in thera-
peutic medicine, preventive medicine, and biomedical research. The
Health for Everyone in the 21st Century objectives set by the World
Health Organization in 2000 express that the health of the elderly has
gained a different form of importance. Objectives under this heading are
separated into two groups: “increasing the life expectancy of 65 year olds
by 20% without disability,” and “increasing the life expectancy of 80 year
olds by at least 50% by enabling them to live in a healthy home environ-
ment, and giving them the opportunity to maintain their autonomy, self-
respect, and place in society” (Öztürk and Arda 2007).
In dealing with end-of-life cases, autonomy is an important subject
because in aged patients who are unable to exercise their right to autono-
mous decision making, due to the decrease in their competency, obtain-
ing informed consent is always a concern while offering healthcare
services.
Situations that have an adverse effect on autonomous decisions are a
decrease in self-assessment ability, a slower reasoning capacity,
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236 Chapter Eleven
displaying faults in decision making, and lack of knowledge in order to

make a decision; all of these situations become an ethical concern in the
decision-making process. As well as being a legal obligation, paying
respect to an individual’s autonomy is also an ethical obligation. Similarly,
in the case of futile treatment, the patient’s ability to contribute to the deci-
sion making regarding the course of treatment is very crucial. In order to
define the importance of informed consent in practice, there is a need for
an approach that takes into consideration its variable and restricted
requirements.
The criterion used to make sure whether or not a patient can use her/his
autonomy is the patient’s competence in decision making. In terms of
making decisions, individuals are either competent or incompetent.
Having competence indicates that an individual can exercise their auton-
omy. Accordingly, the individual’s competency is a must in order to talk
about valid informed consent. The fundamental reason behind such a con-
dition is that they need to have the capacity to understand the information
provided, assess it, and make a suitable decision. The common approach
is that the extent of competency is subject-specific as opposed to general.
For example, the decision-making capacity of an elderly dementia patient,
when asked whether they would like to be cared for at home or in a nursing
home, can be evaluated based on whether or not they can differentiate
between the two environments, and if they are aware of the conclusions
that arise under both circumstances. The fact that competence can deterio-
rate over time should also be taken into consideration. It is common that
the competence of elderly and dementia patients gradually deteriorates,
hence competence evaluation should be repeated regularly.
Protecting the autonomy of incompetent patients and preventing them
from losing their rights is seen as a doctor’s ethical responsibility. In the
event that medical opportunities cannot provide standard treatment, triage
is a method actively used to resolve the issues. This method groups appli-
cants as “likely to die, regardless of what care they receive,” “likely to
live, regardless of what care they receive,” and “immediate care might
make a positive difference in outcome.” It is recommended that treatment
should be offered to those under the last group. A different type of suscep-
tibility is required to assess patients under such terms. Anti-ageism sets
forth that it is unjust that people’s lives are ended; the reasons it puts
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forward are that for those that want to live, the remaining years are pre-
cious, nobody deserves to die so long as they want to live, and there are
those that have a longer life expectancy. The contradictory argument, the
“justified time” argument, assumes that 70 years is a reasonable lifespan,
and states that those that do not reach the age of 70 have been hard done
by, and those that live past 70 are living on borrowed time. This argument
sets forth that everyone should have the chance to reach the justified age,
and those that have reached the justified age should give up their extra
years for those that need it. Of course, both views have their limitations;
the “justified time” argument can be valid in situations where medical
opportunities are limited, but for all other situations, the anti-ageism argu-
ment is more suitable; individuals should not be treated with negative
discrimination just because they are elderly.
Getting patients to articulate their requests regarding their future health
while they still have their decision-making capacity is a form of practice
that is becoming more common. In traditional communities, the method
used most often is that the doctor offers recommendations from which the
patient will benefit the most, and obtains the consent of the patient’s fam-
ily accordingly. In the event that patients have consented to donating their
organs after death, the family also needs to consent for the organs to be
donated. This reminds us of the concepts such as relatives, family, and
family consent that have functions in different cultural structures. In
Turkey, in end-of-life decision making, in the event of lack of consensus
among the patient, family, and the physician, a resolution may be sought
by approaching the ethics committee of the hospital.
MEDICAL FUTILITY: LEGISLATION AND THE

DECISION-MAKING PROCESS
Ethical dilemmas are frequently experienced in intensive care units due to
increased clinical opportunities in intensive care, and the fact that new
technologies are used in intensive care units very frequently (Iyilikçi et al.
2004). Death-related issues are at the forefront in intensive care units,
which is why ethical dilemmas are quite frequent. Some of the ethical
dilemmas experienced are the futility or ineffectiveness of treatment,
whether life support treatment should commence or not, whether ongoing
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238 Chapter Eleven
life support treatment should continue or be stopped, and whether or

not cardiopulmonary resuscitation should be conducted (Çobanoğlu and
Algıer 2004).
In the case of medical futility, a physician may deprive the patient of
treatment by withholding or withdrawing treatment against the will of the
patient/representative because the treatment (requested) does not have any
useful purpose. Therefore, in this situation, the concepts of professional
integrity and patient autonomy clash and create an ethical dilemma (Ersoy
2003).
Even though there are numerous studies that have been conducted in
many countries regarding practices of doctors when faced with death-
related issues and do-not-resuscitate (DNR) orders, there are no reports in
Turkey that investigate how doctors make death-related decisions, and
whether or not social factors affect these decisions. However, regarding
DNR orders, Iyilikçi et al. (2004) considered this and conducted a study
that assessed the practice of Turkish anaesthesiologists under such cir-
cumstances. In the study, 65.9% of participants stated that they execute
written and verbal DNR orders. These decisions are mainly based on
discussions with the other physicians (82.7%) before being made; discus-
sion with the family, or with the patient, or the ethics committee seems
not to be the preferred way in daily practice. Only 6% of DNR instruc-
tions are written, the remaining 94% are verbal. The majority of DNR
requests in North European countries are written, and the fact that DNR
requests in Turkey are mostly verbal illustrates how the topic is unrelated
to legal rights and obligations, or other practical views. According to
responses which participating doctors gave to a case presented by
researchers, it was concluded that Turkish doctors prefer to continue, or
limit, treatment instead of withdrawing treatment or giving the patient
painkillers in situations where treatment should not be initiated or with-
drawn. While most European doctors believe that withholding or with-
drawing life support are primarily biomedical and ethical issues, where
the doctor should make the decision, doctors in Turkey inform families
that their patient has no chance of recovery, but families insist that the
patient should be provided with full life support (Iyilikçi et al. 2004).
A study, conducted to understand the international difference in deci-
sions made in intensive care units regarding death, concluded that DNR
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requests differentiated according to geography; while those participating

from Australia, Canada, the USA, and Northern and Central European
countries gave written DNR instructions, those participating from Turkey,
Southern Europe, and Brazil preferred to give DNR instructions verbally.
Among the obtained results was the fact that participants from Turkey and
Japan frequently chose to sustain full life support together with choosing
aggressive treatment in comparison to other participating countries
(Yaguchi et al. 2005).
A study, conducted to prevent potential conflicts caused when
determining and resolving ethical issues perceived by doctors and nurses
working in intensive care in Turkey, concluded that the most common
ethical issue which doctors and nurses working in intensive care face is
death-related decision making. Death-related decisions made in intensive
care are decisions as to whether the death of the patients should be
delayed or whether it should be speeded up. This study set forth ethical
issues, such as euthanasia, refusing treatment, futile treatment, brain
death, DNR decisions, commodification, organ donation, and autonomy,
under the basic category of death-related decision making (Çobanoğlu and
Algıer 2004). Passive euthanasia was analysed in the context of not pro-
viding or withdrawing treatment. In this study, a significant portion of
doctors (68.4%) reported that they considered futile treatment as an ethi-
cal issue, while nurses made no comment. On the other hand, while physi-
cal restraints were a major issue for nurses, doctors made no comment.
This proved that doctors and nurses defined ethical issues based on their
area of responsibility due to the nature of their professional roles. The fact
that doctors are more susceptible regarding whether or not treatment is
futile can be interpreted as part of their role or physician paternalism.
In 2005, Akpinar et al. (2009) conducted a study regarding death-
related decisions making by nurses working in paediatric intensive care.
The study concluded that 65% of nurses could not accept not initiating
pointless (futile) treatment, and 60% of nurses could not accept withdraw-
ing treatment. Sixty-eight percent of nurses accepted that intravenous
feeding should continue regardless of the consequences. In terms of futile
treatment, nurses had a tendency to leave the decision to parents, or act in
a paternalistic way. According to study results, authors reported that
nurses ruled out their death-related ethical responsibilities, and concluded
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240 Chapter Eleven
that nurses working in intensive care units in Turkey definitely require

training about the principle of doing no harm, the principle of justice, and
death-related ethical issues such as the pointlessness or futility of treat-
ment. In addition, authors reported that cultural values directly affected
the habits of healthcare staff, and how they were well-established.
However, they suggested that these habits could be changed by providing
training about death-related ethical issues, especially on the subject of
medical futility in intensive care (Akpinar et al. 2009).
There are still no distinctive death-related laws or ethical legal
regulations in Turkey. For example, there are no legal examples in Turkey
defining whether or not a doctor has the authority to make death-related
decisions, to limit or withdraw support from terminal or seriously ill
patients (Iyilikçi et al. 2004).
Ersoy (2003) argues that a doctor has the right to refuse conducting a
medically futile intervention based on Article 6 of the Patient Rights Act
of 1998, which relates to medical futility and suggests that in order for
medical resources to be distributed justly it should be on a need basis. The
relevant article of the Patient Rights Act is Article 6, which states:
“The patient has the right to benefit from health services in accordance with
their needs, including preventive health services and activities related to
encouraging healthy living within the framework of justice and equity
rights. This right also includes the obligation all healthcare organisations,
institutions, and healthcare staff have towards complying with justice and
equality principles (Hasta Hakları Yönetmeliği 2009).”
MEDICAL FUTILITY AND EUTHANASIA

A case narrative: “In some cases you can “feel the hurt” with the patient.
A Stage IV small cell lung cancer patient was begging for help to die because
of the severe shortness of breath. None of the sedative drugs could sedate her.
The situation was discussed with the family. The possibility that the patient
could not be awakened when put to sleep was discussed with the family.
Everyone agreed with this possibility since no one could any longer tolerate
the patient’s begging and crying. IV infusion of one ampoule of midazolam
was started. An hour later the patient had died. This was an inevitable end for
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the patient. The patient was comfortable. Patients have the right to die also.
Therefore law changes are needed these concepts should be considered
within the understanding of treatment (Platin 2007).”
The term “euthanasia” comes from Latin, meaning “good death.” Even
though it has been disguised in many different shapes and forms since
ancient times, euthanasia is an important subject that continues to be scru-
tinised in ethical debates. Euthanasia is grouped under three different cat-
egories: doctor’s order, patient’s request, and the nature of the procedure.
Euthanasia upon patient request is divided into three groups: voluntary
euthanasia, non-voluntary euthanasia, and involuntary euthanasia. A granted
right creates grounds for everyone that could benefit from exercising that
right. There are question marks as to whether or not euthanasia is a right
because there are several situations in medicine in which the patient’s con-
sent cannot be obtained. Subject-related examples in local regulations show
that euthanasia is not seen as a patient right in Turkey. However, this situa-
tion does not eliminate ethical issues related to the subject.
Euthanasia is defined as passive or active, depending on the role the
doctor plays during the process. Euthanasia can be considered an action
against medicine, an occupation based entirely on “life” and “keeping the
patient alive.” This heading, which is a sore discussion spot for medicine,
articulates arguments such as “even if we approve euthanasia under cer-
tain circumstances, this does not make us executioners,” “active euthana-
sia cannot be something a doctor does, when their only task during death
sentences is documenting the death,” and “medicine saves the lives of
individuals that have attempted suicide, and for the sake of internal con-
sistence, medicine should protest against euthanasia.” Some of the ques-
tions forming the discussion are as follows: Are there circumstances
where medicine can justify “turning a blind eye,” in situations where
nothing else can be done for a patient, and “respect for life” an occupa-
tional principle? If doctors take on such a “task” will it disrupt the doctor-
patient relationship which is based on trust?
In Turkey, on one hand, decision making about futile treatment is a sam-
ple of inadequate discussion; on the other hand, euthanasia and assisted
suicide are strictly forbidden. Therefore, it is possible to sustain medical
treatment and support in applications under every condition. A doctor that
does not intervene to stop a suicide attempt may be perceived as assisting
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242 Chapter Eleven
suicide. There are examples where such doctor attitudes, which take into
consideration patient autonomy, are deemed illegal; however, subject-
related ethical discussions are still considered insufficient (Arda 2002).
For example, if an individual has an accident at a young age and is left
paraplegic, and he decides that he cannot live like that, and want to exer-
cise his right to euthanasia, there is no place for such a request in Turkish
medical law. There is no basis available that will take such a request into
consideration. It is illegal to withdraw treatment, even if this patient
becomes quadriplegic, is connected to a ventilator, and adamantly requests
to be unplugged from the ventilator. Withdrawing treatment is not defined
in medical regulations, and is not a part of general practice. However,
under circumstances where the cost of treatment is highly expensive, rela-
tives of the patient may be asked to take their patient home; this is
accepted as a form of passive euthanasia. Bearing in mind that situations
in which withdrawing or withholding life support is confused with passive
euthanasia. In Turkey, euthanasia is an action that is generally considered
illegal by law. According to Turkish Criminal Law No. 5237 (Türk Ceza
Kanunu 2010), euthanasia falls under “manslaughter in the first degree.”
The clearest clause regarding euthanasia is stated in the Patient Rights
Act 1998. Article 13 of the Act, titled “Euthanasia Prohibition,” says that
“Under no circumstances can any individual abandon the right to live,
whether by medical necessities, or in any other manner whatsoever.
Nobody’s life can be ended, upon request of the individual, or upon the
request of another person” (Hasta Hakları Yönetmeliği 2009).
In terms of limiting or withdrawing life support, doctors in Turkey are
obliged to comply with the Medical Deontology Regulation 1960 (Tıbbi
Deontoloji Nizamnamesi 2009), in which Article 13 states it is not possi-
ble to conduct a procedure that will reduce the physical endurance of the
patient, and Article 14 states that doctors are obliged to display due dili-
gence required by a patient’s condition.
Article 13/3 reads: “Doctors and dentists cannot conduct any actions,
without diagnosis, treatment, or preventive purposes, which will reduce
the mental or physical endurance of a patient upon request by the patient,
or any other reasons.” In this regard Article 14/1 emphasises that “Doctors
and dentists will display the due diligence required in accordance with
patient circumstances. They are obliged to reduce or put a stop to the pain
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endured, even in situations where it is impossible to protect the life and

health of the patient.”
CONCLUSION
Elderly patients suffering from chronic, progressive, and possibly termi-
nal illnesses have a hope of getting better, and have expectations and
rights to receiving treatment that is honourable as opposed to treatable.
The due diligence that medicine is obliged to display is without a question
also valid for elderly patients.
Bearing in mind that relatives of patients actively contribute to the pro-
cess of decision making, the extent of doctor-patient relationships has
expanded, and shared responsibility and decision making regarding the
patient is getting more attention. However, doctors play a significant role
in resolving issues faced during this process by making constructive and
functional recommendations and it is obvious that doctors should display
the required due diligence at this point. It can be argued that a doctor able
to distinguish between treatment and care applications, achieve team work
coordination, and provide the patient with compassion and attention in a
humane approach during the diagnosis, treatment, and follow-up process,
has the correct attitude in dealing with medical futility.
In the event that a patient in Turkey is thought to be receiving treatment
that is medically futile, there is no law that allows treatment withdrawal.
Euthanasia is classified as a crime by the Constitution in Turkey. However,
based on daily practice, it is possible to state that passive euthanasia is
exercised in certain cases.
It is possible to indicate that death-related discussions are extremely
limited in the world of medicine in Turkey, and the subject is not touched
upon enough during medical school. In fact, the same can be said for spe-
cialist physicians regarding their own education. In daily medical practice
two different situations are mostly seen. One is where an accurate brain-
dead diagnosis is made and after that the patient is taken off life support
and artificial feeding procedures. The other one is where relatives of
patients request treatment to be withdrawn and the patient discharged.
Regardless of the differences, both situations have difficulties to struggle
with and seems to be similar practices. On the one hand is the weight of
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244 Chapter Eleven
making an irreversible decision in terms of the decision maker, and on the

other hand the implications of making such decisions — being given vari-
ous labels directed at the occupational identity, and reducing/damaging
the trust of doctor-patient relationships. The serious issues regarding the
professional role of physicians are providing treatment directed at saving
the lives of patients that are not competent to make decisions, the possible
benefits or whether such treatments are necessary or futile, the attitudes
displayed by relatives of patients regarding the subject, and the ethical
responsibility of delaying the death of an individual who is in pain due to
the availability of technology. Therefore, it is necessary to address how far
the effort to “insist on keeping the patient alive at all cost” ignores patient
autonomy, and whether or not “a right to die” exists based on participa-
tion. We conclude that more empirical surveys to document public and
professional attitudes towards end-of-life decision making in general and
medical futility in particular are crucial for the healthcare system in
Turkey.
REFERENCES
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CHAPTER TWELVE
MEDICAL FUTILITY IN THE UNITED ARAB EMIRATES
Said Abuhasna and Ali Abdulkareem Al Obaidli
SUMMARY
This chapter presents the approach to medical futility in the United Arab
Emirates (UAE) and the surrounding region, by explaining the health-
care system, decision making regarding end-of-life issues in general and
medical futility in particular, as well as related laws and guidelines.
The UAE has a universal healthcare system, which provides access to
healthcare for all of its citizens. Unlike in Western societies, limited
research has been conducted on the end-of-life issues in the UAE. With
the expansion of the local population and with the growing numbers of
practicing Emirati physicians, discussions about end-of-life care has
been increasing. Medical symposiums and conferences have been held
around the country addressing the need for awareness among profes-
sionals and patients about this subject and hospitals have started offering
palliative care for terminally ill patients. However, in the UAE, limiting
medical treatment deemed futile is a new concept with no legal defini-
tion. The most acceptable form in dealing with medical futility is to limit
further medical interventions. Formulating a national policy based on
physicians’ attitudes and the perceptions of patients and families is nec-
essary to clarify the legal position on end-of-life decisions in general and
medical futility in particular.
247
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248 Chapter Twelve
INTRODUCTION
The Gulf Cooperation Council (GCC), is composed of six countries: the
United Arab Emirates (UAE), the Kingdom of Saudi Arabia, Oman,
Kuwait, Qatar and the Kingdom of Bahrain. They share the same religion,
culture and customs.
These countries are an integral part of the wider Arab region. They are
deeply rooted in Arab culture and history, and Islam represented by the
Qur’an and Hadith is the fabric of this society. The countries of the GCC
are located on or near the Arabian Peninsula that comprises an area of
2,500,000 km2 and a population of approximately 42 million according to
a 2012 census. The unified economic agreement between these countries
was signed on November 11, 1981, in Abu Dhabi, the capital of the UAE.
The main resource of the Gulf Cooperation Council countries is oil.
However, these countries have begun an aggressive policy of reforms and
structural changes with the aim of diversifying their economies through
building strong industrial-based economies as well as providing the neces-
sary infrastructure to be tourist destinations and/or service and financial
hubs as well as centers for trade and transit between Asia and Europe. All
GCC states have experienced unprecedented socioeconomic transforma-
tion that has led to higher standards of living, stable currencies and low
inflation rates. The local populations of the GCC countries are generally
small and therefore a high proportion of the work force consists of expa-
triates from other countries. The prevailing political and social system of
these states is mostly conservative and tribal in nature with strong family
and tribal ties. One common theme that bonds all GCC countries is the
religion of Islam and the Shari’a law. In this chapter, we will give the
UAE as an example to discuss medical futility and end-of-life issues
because what applies to the UAE is likely to apply to the rest of the GCC
countries.
Historically, the UAE was established by unification of seven emirates.
The UAE became a fully independent country on December 2, 1971. While
the UAE has worked to strengthen its federal institutions since achieving
independence, each of the seven emirates still maintains substantial auton-
omy. Currently the population of the UAE is close to 8.9 million residents
in 2012, less than 15% of which are local citizens. The balance of the
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Medical Futility in the United Arab Emirates 249
population is made up of aliens who reside in the UAE. Greater than one
third of this population is from the Indian sub-continent and South-east
Asia, while a significant number are from Europe and North Africa. The
majority of Emirati citizens are Muslims with an average life expectancy
of 74.3 years (UAE National Bureau of Statistics 2010).
The UAE has made significant progress in its healthcare system over
the past 41 years. The healthcare sector continues to undergo major trans-
formations to ensure that it is well integrated in order to meet international
healthcare standards (Blair and Sharif 2012). Educational standards are
rising rapidly in the UAE. Citizens and temporary residents have taken
advantage of higher education facilities throughout the country. Many
foreign institutions, including American, British and Australian universi-
ties, have established branches in the UAE. A developing country such as
the UAE, which has taken substantial strides in its healthcare system and
delivery, should be prepared to address end-of-life issues.
THE HEALTHCARE SYSTEM IN THE UAE

AND OTHER GCC COUNTRIES
The GCC governments have made substantial investments in healthcare
infrastructure during the past 25 years, building hospitals and clinics.
They have promoted a more modern approach to tackling infectious dis-
eases, such as malaria and measles that were once rampant in the region.
Although differences exist from country to country, the overall improve-
ment has been impressive. The average life expectancy rose from 60.5
years in 1978 to 73 years in 2004; during the same period, infant mortality
fell from 69 deaths per 1,000 live births to 18. The average crude birth rate
is 18.4% and crude death rate is 2.9%. Those below 15 years old make up
19.7% of the total population, while those greater than 65 years of age
comprise only 1.6% of the population.
Healthcare demand and spending are rising sharply in the GCC coun-
tries. Policy makers would like to see the private sector play a greater role
in their healthcare systems, in both the delivery of healthcare to the popu-
lation and the financing of healthcare. To promote the private sector’s
involvement, the GCC governments must make major regulatory and
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250 Chapter Twelve
policy changes and, above all, use public funds to reimburse nationals for
the private healthcare services they consume, and define and enforce a
single set of quality standards for both public and private healthcare deliv-
ery systems. The GCC countries had universal free healthcare coverage
extending to all citizens for the past years until recently when the pattern
of healthcare financing changed in an effort to optimize access to health-
care and the quality of healthcare, particularly following the introduction
of healthcare insurance systems. The UAE started gradually to implement
the mandatory health insurance requirement. This process started faster in
some emirates with others following in their footsteps.
There are different classes of health insurance with subsidized basic
plans for low-income people; however, others have enhanced plans.
ETHICS IN END-OF-LIFE ISSUES IN THE UAE

Death has become a process rather than an event. It no longer occurs in the
home but in a medical institution. Sir William Osler once said, “Even the
face of healthcare has changed, the fundamental nature of the practice of
medicine is still the science of uncertainty and the art of probability.”
Physicians practicing in the West are encouraged to discuss advance direc-
tives with their terminally ill patients and their patients’ families, especially
when the prognosis is poor. It is because the concept of respect of patient
autonomy and choice is accepted and implied that futility of care needs to
be balanced with performing the maximum effort to save patients’ lives.
From an Islamic perspective, there are no clear guidelines on end-of-
life care for a Muslim patient. The first Arab Muslim country that started
applying end-of-life care guidelines was the Kingdom of Saudi Arabia
despite a lack of legal policy, and with the support of Islamic scholars’
fatwas. In Arab Muslim countries, the relationship between patient and
physician is one of traditional paternalism, based on the principles of
goodness and kindness. This is no different from Christianity, whose
adherents are directed to do good to others in a spirit of love and kindness
(Damghi et al. 2011).
The Shari’a law, which governs the societies in Arab and Muslim coun-
tries, is based on the Holy Qur’an, the text believed by Muslims to be the
direct word of God. The second is the Sunnah, the examples in words or
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deeds of the Prophet Muhammad, that is often incorporated into Islamic

laws, and the third is the Ijtihad, the law of deductive logic.
In Islamic Shari’a, the definition of death has been accepted as when
either of the two following signs is noted: First, when the heartbeat and
breathing stop completely and the doctors believe that they cannot be
restarted. Second, when all the functions of the brain have ceased, experi-
enced doctors and specialists confirm that this is irreversible and the brain
(as a whole) has started to disintegrate (Administration of Islamic
Research and Ifta 1988). Most Islamic countries have endorsed these defi-
nitions. In the UAE both the General Authority of Islamic Affairs and
Endowments (Awqaf) and the Ministry of Justice recently endorsed these
definitions of death as well.
From the Islamic scholars’ perspective, there is a consensus that end-
of-life issues and even withdrawal of ventilatory support is acceptable in
cases that meet the definition of death or in cases where three physicians
have determined that the patient is clinically dead (Damghi et al. 2011).
This has enabled physicians in Saudi Arabia, for example, to implement
their own end-of-life decisions without necessarily securing consent from
the family.
The UAE has a diverse group of practicing physicians from all over the
world. These physicians are from different countries and origins — the
Middle East countries, the USA, Europe, Australia and African countries.
With the growing number of practicing local Emirati physicians, the end-
of-life concept has been more in discussion than ever before. Symposiums
and conferences have been held addressing the need for awareness about
end-of-life issues. Some hospitals have started offering palliative care for
terminally ill patients. There is a growing understanding in the health
ministry of the UAE for the need to have a federal policy on dealing with
terminally ill patients.
MEDICAL FUTILITY IN THE UAE: WHO MAKES

THE DECISION?
Medical futility refers to interventions that are unlikely to produce signifi-
cant benefits for the patient. In the UAE, most of the physicians and other
healthcare providers agree with the international standard definitions,
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252 Chapter Twelve
particularly when supported by Islamic endorsement. This has paved the

way for the implementation of deceased organ transplantation programs
similar to those in most other Islamic countries.
As Islam teaches, everyone will face death, and the manner in which
we die is of great individual importance. Comforting the dying is a must.
Although guidelines for healthcare providers in delivering comfort care to
the dying patient will be invaluable to staff covering end-of-life situations
and spare the patient from futile interventions, there is a lack of such
guidelines in the UAE. These guidelines would be helpful in explaining
who makes the decision for resuscitation, how the decision is made, and
the role of patients and their families in the decision making. With the
development of widely accepted Islamic guidelines on futile care as prac-
ticed in Saudi Arabia, UAE physicians may follow such guidelines for
treating terminally ill patients.
There is a growing understanding about the futility of care for termi-
nally ill patients in clinical settings and the concept of palliative care is
gaining momentum in the UAE as well as the rest of the Islamic countries.
With the increasing number of patients with terminal diseases and the
limited intensive care resources in the UAE, the time may be right for
addressing end-of-life care issues with the involvement of healthcare
policy makers, as it has been practiced in the West and some other Islamic
countries which adopted the guidelines. For the time being, an available
resource for physicians would be experiences or guidelines from Western
countries as well as other Islamic countries in the care of terminally ill
patients if such guidelines exist. Among physicians, critical care physi-
cians are best suited to address this issue. We gauged these assumptions
in a survey that we recently conducted, which included a questionnaire
related to the management of terminally ill patients, which was sent elec-
tronically to the members of the Pan-Arab Critical Care Physicians. The
questionnaire was to compare the opinions of physicians who were edu-
cated in the West versus the ones educated in non-Western countries
(Abuhasna et al. 2009). We found that all physicians agreed on having
guidelines to deal with end-of-life care issues. There was no statistically
significant difference between the two groups with regard to rendering
futile care to patients.
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Although technology exists to sustain vital functions of almost any

patient in an intensive care setting, not every patient is a candidate for the
initiation and maintenance of life support measures.
Many critical care physicians encounter the situation of futility of care
for terminally ill patients and the need to “bring the family on board” with
realistic expectations about the prognosis. A lack of clear understanding
about the prognosis of terminal illnesses leads families in the UAE to
persist with futile treatments, which raises many ethical and practical
questions. Optimal education of patients and their families often resolve
these difficult situations for patients, families and their caregivers.
On the issue of resuscitation of terminally ill patients in Islamic bioeth-
ics, the following has been cited from the Qur’an (39:42): “There are
times when human beings need to recognize their own limits and entrust
nature to take its own course.”
The Prophet (SAW) said while addressing the person whose funeral
rites he was reading, “How fortunate you are that you died while you were
not afflicted with illness” (Sahih Bukhari).
At several Islamic Jurist Committee meetings held in Mecca and
Jeddah, and at the 3rd International Conference of Islamic Jurists in
Amman in 1986, end-of-life issues were discussed in detail. At the meet-
ing in Amman, Muslim jurists from different schools ruled that once inva-
sive treatment has been intensified to save the life of a patient, life-saving
equipment cannot be turned off unless the physicians are certain about the
inevitability of death (Islamic Jurists 1990).
In many cultures, families and physicians are readily prepared to dis-
close the truth regarding the patient’s illness. The ethics of a number of
Asian and Eastern countries such as the UAE requires fatal diagnoses and
bad prognoses to be disclosed to a family member.
However, the truth is often concealed for fear that it will extinguish the
patient’s hope, leading to despondence, physical suffering and mental
anguish (Mobeireek et al. 2008). Disclosing the truth is therefore regu-
lated by the prevailing concern for patient beneficence.
The right to refuse medical treatment is well established in medicine
and law. When cases arose asserting that a patient had the right to be free
of unwanted medical interventions, the right was readily recognized and
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254 Chapter Twelve
clearly affirmed. In the UAE, with Arab and Muslim cultures, illness is a
shared family affair. Consequently, decision making is family centered
and beneficence and non-maleficence play a dominant role in their ethical
model, in contrast to patient autonomy in Western cultures.
In the UAE and the majority of Arab nations, religious and cultural
issues often play a more vital role in decision making by families and
physicians than economic considerations.
In Saudi Arabia, for example, futile treatment is advocated and often
requested by the patient’s family (Albar 1996). This is the same in the
UAE; however, this is a subject of great dispute, even among Islamic
scholars. Some actively do not advocate treatment if it is to merely pro-
long the final stages of life (death). Moreover, they stress that delaying
death with futile treatment is unacceptable in Islam; the Qur’an encour-
ages the recognition of one’s own limits. Islamic law, therefore, permits
the withdrawal or withholding of futile or disproportionate treatment
when consent is obtained from a family member, allowing death to take
its natural course. Of importance is a study in Lebanon looking at with-
holding and withdrawing treatment in an intensive care unit, which high-
lighted concerns that the shift of focus to palliative care was taking place
inappropriately late in the course of the patient’s illness (Sachedina 2005).
There is thus recognition that delaying the inevitable death of a patient is
neither in the patient’s nor in the public’s best interests. According to
Islam, the physician needs to be certain of the inevitability of the
impending death, and if not, then life should be sustained. The futility of
end-of-life treatment, however, can be difficult to define. This is due to
several factors such as the effect on quality and length of life, emotional
costs, financial costs and the likelihood of success. In Islamic culture,
withholding therapy seems to be a more acceptable mode than limiting
futile treatment when based on the physician’s advice and consensus of
family members (Takrouri and Halwani 2008; Fatwa No. 115104).
In fact, physicians in the UAE are often reluctant to discuss the subject
of end-of-life care with patients or their family members out of the belief
that it will not be accepted. They fear that talking about such issues may
cause a loss of trust in the physician (Da Costa et al. 2002).
In result, a lack of discussion about futile care increases the length of
stay in the intensive care unit as well as to a significant extent the number
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of survivors in a permanent vegetative state, which has led to a shortage

of intensive care beds in the recent past. However, this approach is fading
away and currently physicians understand the importance of approaching
Emirati families to discuss end-of-life care issues in general and futile
treatment in particular.
Currently, in a large hospital in Abu Dhabi, which has a palliative care
program, the idea of comfort care or limiting futile treatment is very well
received by the family members of patients who are admitted to the ICU.
In this model, care conferences led by a senior member of the team are
held to discuss the course of the patient’s illness and issues related to futil-
ity of care and end-of-life care. Once a decision is made about the
end-of-life care plan, the senior member of the team will communicate
this to the rest of the team, including the nurses and ancillary staff. In our
own survey mentioned earlier, the results are consistent with those of Da
Costa et al. (2002). Subsequently, we surveyed 210 family members who
are considered the proxy decision makers for the patients and we asked
them if they would make a decision to limit the therapy for their loved
one. The majority (about 75%) were reluctant to make such a decision and
preferred to have the physician make the decision. A significant number
of proxy decision makers asked the physician what he/she would do if it
were their own family member (Abuhasna et al. 2009). Takrouri and
Halwani recently published their study about end-of-life care from an
Islamic point of view. They concluded that the consensus on this question
is still evolving in the Islamic communities and that the Islamic verdicts,
judicial opinions, or fatwas, were indicating that the decision of medical
futility was to be decided by competent physicians involved in the care of
the particular patient (Takrouri and Halwani 2008).
In our survey, which was conducted in the UAE, withholding treatment
was the preferred method of end-of-life care interventions. The process of
withholding the patient’s life support frequently involves several discus-
sions with the family as treatment goals are re-addressed when the prob-
ability of survival declines. Once the decision is made not to escalate
therapy, the goal of treatment changes from attempts at curing to provid-
ing comfort measures. Therefore, the use of aggressive interventions,
including dialysis, inotropic support and mechanical ventilation, would
have to be justified in terms of providing comfort care to the patient.
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256 Chapter Twelve
In terms of decision making for an unconscious patient, in Western

societies, advance directives are a well-known concept. The advance
directive is synonymous with Al Wasiya in Arabic. However, the impor-
tance of Al Wasiya has been emphasized in the Qur’an: “Prescribed for
you when death approaches [any] one of you if he leaves wealth [is that
he should make] a bequest for the parents and near relatives according to
what is acceptable — a duty upon the righteous” (2:180). This is also
reiterated by the Prophet (PUH) who said, “It is not right for any Muslim
who has something to be given as a bequest to spend two nights without
writing a will about it,” (narrated by Ibn Umar, may Allah be pleased with
him) in Al-Bukhari and Muslim.
In the Western countries when patients lose their mental capacity but
had indicated in an advance directive that they did not want life-prolong-
ing procedures, courts have ruled that their advance wishes should be
followed (Sprung et al. 2003). However, this is not the case in the United
Arab Emirates.
When it comes to end-of-life care decision making, it appears to be
influenced more by culture than religion. Another issue that is probably
most influential in end-of-life decision making in this region is the struc-
ture of the family. The Emirati family is built on respect of the elder. The
eldest makes the decision in the family and it usually goes in the following
descending order: The father, the eldest son, followed by the second and
third sons. If none of these are available, the grandfather on the father’s
side would be the sole decision maker in such a situation in the clinical
setting for end-of-life care. This may be interpreted as the proxy decision
maker in an advance directive. Many proxies feel uncomfortable in decid-
ing to forgo life-prolonging interventions because they see themselves as
deciding between life and death for another person. Since currently there
are no laws on terminal care or advance directives, the physician must turn
to the proxy and discuss the terminal illness care and be prepared to pro-
vide advice and guidance to the proxy.
One study which included 220 patients in an intensive care unit of a
government hospital in the UAE aimed to assess if the (proxy) decision
maker in the family was willing to sign consent to withdraw care for
their dying family member. Among the respondents, 75% of the decision
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makers refused to sign consent to withdraw medical support for their

loved ones. When asked about their reasoning for not signing such con-
sent, 81% of them stated that “they felt guilty”. So making the decision to
withdraw treatment for the patient in the UAE is a process that places the
heaviest burden on the attending physician (consultant) caring for the
patient.
Attitudes of Healthcare Providers and the Public towards

Medical Futility
End-of-life care decision making is in fact a religiously, emotionally and
politically charged issue. Islam teaches us that everyone will face death,
and the way an individual dies is of great importance. A survey has been
recently conducted by our group to evaluate the attitudes of healthcare
providers in the UAE towards end-of-life issues in dying, terminally ill
patients. The questionnaire was formulated by our critical care team that
deals with end-of-life care issues and was sent to all members of the Pan-
Arab Society of Intensive Care Medicine. Most of the respondents were
Muslim consultants with a Western training background. One question
asked for their opinion on whether religion played a significant role in
making decisions for a terminally ill patient. The majority of the respond-
ents replied that religion played a major role in making end-of-life care
decisions. Most of the intensivists worked in hospitals in which there were
no end-of-life care guidelines. The lack of guidelines led to a variety of
practices and approaches to handle the end-of-life issue in terminally ill
patients. When presented with three futile case scenarios — a patient in a
permanent vegetative state, a patient with renal carcinoma with metasta-
sis, and a comatose patient with massive pulmonary embolism and multi-
ple cerebral infarcts on a ventilator — the respondents preferred not to
provide aggressive therapies (Abuhasna et al. 2009). In regard to the ques-
tion about euthanasia, the majority of the respondents rejected it as it was
totally unacceptable in Middle Eastern culture. Almost half of the
respondents wanted physicians to have the ultimate authority in end-of-life
care decision making. Physicians were equally split on overriding the
wishes of the family on the no-code decision.
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258 Chapter Twelve

Euthanasia, derived from the Greek term for “good death”, refers to the
intentional hastening of death of a patient by a physician with the intent
of alleviating suffering. Euthanasia may be carried out by administering
medications to cause death or by withdrawing treatment that is essential
to keep the patient alive. Pain relief and sedation do not fall within the
scope of euthanasia. The issue of euthanasia has long been a matter of
debate in medical, social, legal and religious domains. Islam categorically
forbids all forms of suicide, and any action that may assist the person or
patient to kill himself or herself is forbidden. Islam firmly upholds the
sanctity of human life. The Qur’an says: “And do not take life — which
God has made sacred — except for just cause” (17:33). In another pas-
sage, God says that someone taking an innocent life would be as if he had
killed all humankind. It is not permitted for a Muslim to plan or choose
the time of his own death in advance. There is a saying in which the
Prophet Muhammad (PUH) refuses to bless the body of a person who had
committed suicide. If, for example, someone is suffering from advanced
cancer, but the person is not at risk of imminent death, Islam would pro-
hibit the person from prematurely ending his or her life. Although eutha-
nasia is not permitted, if a patient is critically ill, on life support and there
is no hope for meaningful recovery, Islamic law would allow the patient’s
family to request the physician not to provide medical care and let nature
take its course. This is not “mercy killing”, but an acceptance of the fact
that in this instance, medical treatment is only serving to prolong the
dying process.
CONCLUSION
The United Arab Emirates is an Arab and Muslim country, which follows
Islamic rules when it comes to the sanctity of life, medical care and end-
of-life care. In Islamic ethics, family and community are intrinsically
linked with each individual’s well-being and illness is a shared family
event rather than an individual issue. The family provides a source of
strength, hope and connectedness to others. Accordingly, the principle
of autonomy does not bear the same weight as it does in many Western
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cultures and thus the family is the locus of the decision-making process,
especially when it comes to end-of-life care. Equally, in the United Arab
Emirates, information regarding a patient’s illness belongs to the family,
who then may use the information in the best interests of the patient.
Physicians, consequently, respect the autonomy of the family as a unit.
While death by the neurological criteria of brain death has become an
accepted standard for pronouncing a patient dead in the Western countries,
it has not yet received wide acceptance in the UAE, partly for cultural and
religious reasons. Most family members still do not accept that their
brain-dead loved one is in fact dead. In practice, allowing adequate time
for the family to come to terms with the patient’s death before withdrawal
of life support measures is probably the most prudent course of action.
However, gradually, with more openness in Emirati society, the idea of
limiting medical treatment deemed futile is getting more acceptance
among families and physicians. This is the dominant approach taking
effect without resistance in intensive care units in the UAE regarding
futile treatment.
In general, the physicians’ opinion plays a major role in managing ter-
minally ill patients. The patient’s age, diagnosis, prognosis, length of ICU
stay and religious factors have been identified as factors that formulate
opinions on the patient’s code status (Rahman et al. 2012). In the Middle
East, especially in the UAE, physicians have to consider religious and
cultural issues more than economic considerations when making deci-
sions for end-of-life patients. The patient in the UAE has no autonomy
whatsoever; for example, if the head of a family is terminally ill, the eldest
son would be the decision maker.
The development of written institutional policy is an important step
towards the establishment of a formal and reasonable process for reaching
an informed decision and dealing with futile treatments. Intensive care
providers from varying training backgrounds and seniority levels in the
Middle East agree on most of the issues on managing terminally ill
patients. Limiting medical treatment in the case of medical futility is a
new concept in the United Arab Emirates with no legal definition.
Therefore, there may be ambiguity in interpreting the terms “no code” and
“comfort care” among physicians. Euthanasia is not acceptable culturally
and legally. The most acceptable form in dealing with medical futility is
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260 Chapter Twelve
to limit further medical interventions. Formulating a national policy based

on physicians’ attitudes and the perceptions of patients and families is
necessary to clarify the legal position on end-of-life decisions in general
and medical futility in particular.
REFERENCES
Abuhasna S, Rahman M, Shihab Z, Bloushi A, and Chedid F. 2009. An opinion
survey of family members on foregoing treatment in critically ill patients at
a tertiary care center in United Arab Emirates. Chest 136: 39S-h-39S.
Administration of Islamic Research and Ifta. 1988. Riyadh, KSA, in Fatwa No.
12086 issued on 30.6.1409 (Hijra).
Albar M. 1996. Islamic ethics of organ transplantation and brain death. Saudi
Journal of Kidney Diseases and Transplantation 7: 109–114.
Blair I and Sharif A. 2012. Population structure and the burden of disease in the
United Arab Emirates. Journal of Epidemiology and Global Health 2: 61–71.
Da Costa DE, Ghazal H, and Al Khusaiby S. 2002. Do Not Resuscitate orders and
ethical decisions in a neonatal intensive care unit in a Muslim community.
Archives of Disease in Childhood: Fetal and Neonatal Edition 86: F115–119.
Damghi N, Belayachi J, Aggoug B et al. 2011. Withholding and withdrawing
life-sustaining therapy in a Moroccan Emergency Department: An observa-
tional study. BMC Emergency Medicine 11, doi:10.1186/1471–227X-11–12.
Fatwa No. 115104. Cases in which it is permissible not to use resuscitation equip-
ment (Al-Hālāt allatī yajūz fīhā raf’ ajhiza al-in’āsh). Available at: http://
www.islamqa.com/ar/ref/115104 [Accessed October 8, 2012].
Islamic Jurists 1990. Second decision on the subject of death and withdrawal of
life saving equipment from the patient (Al-qarar al-thani bi-sha’n mawdu’
taqrir husul al-wafat wa rafajhizat al-in’ash min jism al-insan). Journal of
Modern Fiqh Discussion 4: 159–160.
Mobeireek A, Al-Kassimi F, Al-Zahrani K et al. 2008. Information disclosure and
decision-making: The Middle East versus the Far East and the West. Journal
of Medical Ethics 34: 225–229.
Rahman M, Abuhasna S, and Abuzidan F. 2012. Care of terminally-ill patients:
An opinion survey among critical care healthcare providers in the Middle
East. African Health Sciences Journal (in press).
Sachedina A. 2005. End-of-life: The Islamic view. The Lancet 366: 774–779.
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Sprung CL, Cohen SL, Sjokvist P et al. 2003. End-of-life practices in European
intensive care units: The Ethicus Study. JAMA 290: 790–797.
Takrouri MSM and Halwani TM. 2008. An Islamic medical and legal prospective
of do not resuscitate order in critical care medicine. The Internet Journal of
Health 7.
UAE National Bureau of Statistics. 2010 statistics. Available at: http://www.uaes-
tatistics.gov.ae/ [Accessed October 8, 2012].
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CHAPTER THIRTEEN
MEDICAL FUTILITY IN IRAN
Alireza Bagheri
SUMMARY
Medical futility is a controversial issue not only in its definition but also
in its applications. The aim of medicine, if defined clearly, would deter-
mine when medical intervention for a particular case is meaningful and
when it is futile.
In Islamic society, religious beliefs are a fundamental part of both
personal and social life and a major determinant for healthcare decision
making, especially at the end of life.
The Islamic Republic of Iran has a relatively young population, but because
of the scarcity of health resources, the decision about end-of-life patients in
general, and medical futility in particular, is among crucial decision making in
healthcare settings. In Iran, public health services are provided through a
nation-wide network with a referral system and the majority of people have
insurance coverage; however, it only covers a fraction of their medical cost.
There are also several active NGOs in providing support for end-of-life patients
across the country. Backed by the traditional paternalistic view, physicians are
in favor of unilateral decision making about medical futility and willing only to
inform the patient’s family about their decision. At present, however, there is a
lack of regulations or guidelines to help healthcare professionals in decision
making about futile treatment. In an empirical survey on medical futility in
Iran, healthcare professionals have expressed four factors — scarcity of
medical resources, the patient’s suffering, family, and religious concerns — as
very influential in their decision about futile treatment.
263
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264 Chapter Thirteen
INTRODUCTION
End-of-life decisions, especially the decision to withdraw or withhold
treatment for critically ill patients, are complex. Medical futility refers to the
inappropriate application of medical intervention that is unlikely to produce
any significant benefit for the patient. However, the problem of medical
futility has caused controversy over not only how to define the concept of
futility, but also when and how to apply it (Bagheri 2008). This controversial
issue has divided experts in the relevant fields into two groups. On one side,
the proponents of medical futility defend the physicians’ exclusive right to
determine the futility of treatment and decide whether treatment should be
withheld or withdrawn (Schneiderman et al. 1990). On the other side,
opponents argue that medical futility is a construct intended in part to give
physicians more power in a context in which medical authority is threatened
(Carnevale 1998). By distinction between facts and values, they believe that
even the so-called factual judgment of futility has evaluative components
and they argue that “physician unilateral decision making on the basis of
futility is a problematic and misguided approach to the challenge of setting
appropriate limits in medicine” (Rubin 1998).
In the clinical setting conflicts may arise when physicians decide to
withdraw or withhold aggressive medical intervention but patients or their
families request for what the physicians believe is futile treatment. In fact,
in such situations, physicians and patients differ on the goals of treatment
and do not agree on whether the requested treatments are beneficial.
The aim of medicine, if defined clearly, would determine when medical
intervention for a particular case is meaningful and when it is futile. This
would guide healthcare professionals on how vigorously to treat and when
it is morally permissible to withhold or withdraw life-sustaining treatment.
However, the controversy about the aim of medicine gives different answers
to this question. Therefore, the controversy about medical futility, in its
definition and implication, refers partly to the controversy over the aim of
medicine. On the other hand, the goal of treatment is determined by the aim
of medicine and this is one of the main reasons that in futility decisions,
disagreement happens between families and physicians, because they do
not agree on what is beneficial for the patient; “benefit from treatment” has
different meanings in their views.
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Medical Futility in Iran 265
This chapter presents the complexity of the issue of medical futility in

Iran. By providing information about the Iranian healthcare system, it
explains how in an Islamic society end-of-life decisions are made and how
physicians in Iran make decisions about futile treatments.
The Islamic Republic of Iran is the eighteenth-largest country in the
world with 1,648,195 km2 and stands as the seventeenth-most populous
country in the world with a population of around 79 million, more than
65% of which live in urban areas.
Iran is a Muslim country and Islam has introduced its moral, ethical,
and social framework for human life. It has granted a certain privilege to
saving a human’s life. Before Islam (625 AD), Iranians were Zoroastrian,
and religious teaching emphasized the behavior and character of medical
doctors. Reviewing the flourishing time of Iranian (Irani) medicine in
medieval times, we see a great deal of attention paid to the ethical issues
in medicine by the Iranian physicians such as Razes (865–925 AD) and
Avicenna (Ibn Sina) (980–1038) in their teachings and medical practices.
Persian literature, philosophy, medicine, astronomy, mathematics, and arts
became major elements of Muslim civilization. After the introduction of
Islam, based on Islamic teachings which govern all aspects of society,
Muslim physicians put more emphasis on ethical values in their medical
practice.
In Islam, the issue of life and death is among the most sensitive and is
a profound ethical and judicial subject and end-of-life decision making is
one of the most emotionally and ethically charged issues in Islamic
society. Based on the importance of Islamic opinions on different
bioethical issues, Islamic scholars are involved in the discussion of
ethical issues in medicine such as end-of-life decisions, abortion, artificial
reproductive technologies, brain death and organ transplantation. There
are some Islamic principles that are instrumental to healthcare decision
making, for instance principles such as “do no harm” (la dharar wa la
dherar), the principle of “necessity” (dharura), and the principle of “no
hardship” have been referenced in policy making regarding end-of-life
issues. The Iranian Charter of Patient Rights which has been recently
adopted by the Ministry of Health and Medical Education has addressed
some of the critical issues in providing healthcare at the end of life
(Parsapour et al. 2010).
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It should be noted that Iran has a relatively young population, but

because of the scarcity of health resources, the issues of end of life and
decision making regarding futile care are among important topics in
healthcare settings. Although healthcare professionals have stressed the
importance and usefulness of regulations or guidelines, there is no regula-
tion or guideline to deal with futile treatments.
THE HEALTHCARE SYSTEM IN IRAN

The Constitution of the Islamic Republic of Iran, in Articles 29 and
43, emphasizes the highest level of health as a fundamental right for its
citizens. The Ministry of Health and Medical Education is in charge
of fulfilling this goal through the implementation of the national health
policies. The Ministry delegates the implementation of the policies
through the public medical universities across the country. There is at least
one medical university in every province. The Chancellor of each medical
university is the highest health authority and the minister’s deputy in the
province, who is responsible for the public health, healthcare provision,
and medical education. In Iran, healthcare and public health services are
provided through a nation-wide network. This network consists of a refer-
ral system, starting at health houses in rural areas, primary healthcare
centers, health posts in urban regions, and going through secondary-level
hospitals in the cities and provincial capitals and tertiary hospitals operating
in large cities.
The public sector provides primary, secondary, and tertiary health
services; however, the focus of the government on primary healthcare over
the last two decades has made the government the main provider of
primary healthcare services. Some primary healthcare services such as
prenatal care and vaccination are free of charge in public facilities.
In rural areas, health services are provided free of charge based on
medical protocols and standardized packages. However, still this coverage
is not complete and almost 10% of the rural population has no access to
this service. In urban areas, especially big cities, there are more than one
medical university responsible to provide services, which causes confu-
sion over the administrative districts (Shadpour 2006).
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The public sector also provides a considerable part of secondary and

tertiary health services and plays a significant role in the healthcare
system in Iran, but it mainly focuses on secondary and tertiary healthcare
in urban areas. There are also many active nongovernmental organizations
(NGOs) in healthcare; however, these NGOs are mainly active in special
diseases such as children’s cancer, breast cancer, diabetes, and thalassemia.
Iran has increased investment in healthcare during the last 10 years, and
total expenditure on health as a percentage of gross domestic production
(GDP) has increased from 4.7% in 1995 to 7.8% in 2006 (Mehrdad 2009).
Accordingly, almost all health investment indices have improved since the
last decade. It should be noted that the Iranian Development Plan set the
goal for out-of-pocket payment to as low as 30% in 2008. Nonetheless,
almost 55% of health spending, in spite of government spending on
health, is still paid out of pocket by patients. The outpatient treatment
proportion of health funds is 18%, inpatient treatment 33%, and the
primary care proportion is only 7% (Sabbagh 2004).
According to the health insurance system’s official data, more than 90%
of Iranian people are under the coverage of at least one kind of health
insurance, public or private insurance. However, one survey shows that 26%
of Iranians do not have any kind of medical insurance (Naghavi 2004). There
are four types of public health insurance in the country. The first is the Social
Security Organization, which is one of the largest health insurers in Iran.
It covers people who are nongovernment employees. More than 27 million
workers and their families are under this insurance coverage. Almost 30% of
the workers’ income goes to this organization to provide resources for this
insurance system. This organization owns and runs many clinics and
hospitals in the country. Medical services in these clinics and hospitals are
offered either free of charge or at very low cost for insured people.
The second is the Medical Services Insurance Organization, which
provides health insurance to government employees, students, and rural
dwellers. This system covers 6.7 million governmental employees and
their family, who pay a fixed amount each month for their insurance. The
government pays the villagers’ total premium and 80% of the students’
premium. Most of the healthcare providers accept this kind of medical
insurance but patients should pay a part of the medical cost.
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The third includes organizations such as the Oil Ministry, banks, munic-
ipalities, and military organizations that provide health insurance for their
own employees.
The Imam Khomeini Relief Foundation (Committee) is the fourth,
which provides health insurance for the uninsured poor people, and the
government contributes to their premium through this organization’s fund.
There are also some semi-public insurance companies, which mainly
cover co-payments for costly inpatient services. It should be noted that
for cancer patients there are some governmental subsidies, as well as
support for end-of-life patients by NGOs and charity organizations; how-
ever, there is no data to show the end-of-life expenditure in Iran and the
efficiency of these subsidies. A small percentage of Iranian people are not
covered by any of these health insurance plans. It should be noted that
different insurance systems provide different levels of service coverage
and some people have enrolled in two different health insurance plans to
make it easier to shop for services at lower cost. However, with all these
insurance plans, there are individuals with no insurance coverage. Several
NGOs and charity organizations also provide help to end-of-life patients
and their families. For instance, the Charity Foundation for Special
Diseases was set up in 1997 as a nongovernmental organization to support
patients suffering from special diseases such as cancer, multiple sclerosis,
thalassemia, and many other life-threatening health problems. Since
then almost 54,000 patients have received support through three medical
centers in Tehran and many others across the country under the founda-
tion. There are also other NGOs in Iran which support end-stage patients
and their families such as The Society for Helping the Cancer Patients and
the Society to Support Children Suffering from Cancer (MAHAK), which
is particularly responsible for the reduction of the child mortality rate and
the burden of cancer on children and their families. During the past two
decades, this organization has built a highly specialized hospital and
research center in pediatrics to help those children at the end of their lives.
END-OF-LIFE ISSUES IN IRAN

The rapid advances in biomedical technology and its applications have
raised ethical questions, especially at the end of life. Dying patients face
complex and unique challenges that threaten their physical, psychological,
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and spiritual integrity. Decisions about withholding and withdrawing

life-sustaining treatment, the patient’s quality of life, futile treatment, and
allocation of scarce health resources are among these issues. However, the
educational background of healthcare providers is frequently not strong
enough to respond to these issues appropriately. The social understanding
of the concepts of health, disease, life, and death influences the society’s
reflection on end-of-life issues. It also shapes related legislation and
guidelines. Many authors have stated that the definition of human death
is beyond the scope of medicine alone, and philosophical, cultural, and
religious issues have a great role (Bagheri 2007). Therefore, formulation
of a proper definition of death requires an understanding of the religious
estimation of human life and an endeavor to unravel the secrets of the soul
or the spirit, which, according to Muslim belief, departs the body at the
time of death (Sachedina 2009). In Iranian society, religious beliefs are a
fundamental part of personal as well as social life and a major factor in
healthcare decision making, especially at the end of life. Therefore, it is
appropriate to provide some information about Islamic views on human
life and death.
The Qur’anic Views on the Beginning

and End of Human Life
Regarding the creation and nature of the human being, God the Glorified
says in the Holy Qur’an:
“And certainly We created man of an extract of clay. Then We made him a

small seed in a firm resting-place. Then We made the seed a clot, then We
made the clot a lump of bones. Then We clothed the bones with flesh, then
We caused it to grow into another creation, so blessed be Allah, the best of
the creators” (23:12–14).
Thus, God says that the human being is at his initial creation nothing
except a material body that has undergone various forms from its earliest
existence, until God the Almighty causes the very corporeal and material
being to grow into another “creation” in which the human being acquires
perception and will so much so that he is enabled to do things, such as
thinking, that could not be done by a mere body.
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God also says: “So when I have made him complete and breathed into
him of My spirit, fall down making obeisance to him” (15:29).
Thus, the Almighty God has composed the human being of two com-
ponents: matter and pure essence or the very soul or spirit that is spiritual
and immaterial. These two components will remain together as long as the
human being continues to live in this world. As soon as he dies, his body
will die but his soul will survive. The human being, whose truth is his very
soul, will return to God the Glorified. As God says: “Then after that you
will most surely die. Then surely on the day of resurrection you shall be
raised” (23:15–16).
In other words, the body and soul are truly companions. Like dough
that is made of flour and water, the human being is also made of these two
components: body and soul. When the soul accompanies the body, that
person embraces life, and when they separate from each other, such sepa-
ration means death (Tabatabaee 1984).
The Concept of Death in the Holy Qur’an

As mentioned, the concept of death and its definition influences people’s
understanding and decisions related to the end of life. This concept in a
religious society such as Iran is based on Islamic teachings. In the Islamic
view, the issue of death and life is one of the reasons for monotheism.
Neither can life and death be removed from the world nor can they be said
to have occurred on their own. Hence, death and life need an efficient
cause, and God the Almighty is their efficient cause. The Holy Qur’an
considers death an evolutionary process in the existence, not non-existence
and annihilation. The human being passes from the world of nature to the
other World, and this, getting rid of the world, is called death. Thus this
transfer from this world to the Hereafter is called death, but death does not
bring about annihilation (Javadi Amoli 1987).
The Holy Qur’an regards death as God’s creation. Hence, it reads:
“(He) created death and life that He may try you — which of you is best
in deeds” (117:6).
Death and life are both at God’s control. As the Qur’an reads: “And
He it is Who causes death and gives life” (103:44). If death were at the
hands of others, they could prevent it, as human beings have always been
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thinking how to prevent death and trying to avoid dying. However, the
Qur’an reads: “Every soul must taste of death” (21:35).
It should be noted that the current notion of the right to die, which has
been accepted in some societies, is not recognized in Islam. Based on the
Islamic Shari’a the decision regarding the end of life is through divine
decree and it refuses to recognize individual rights in this matter
(Sachedina 2005). According to the Qur’an, life is a divine trust and
cannot be terminated by any form of human intervention. Its term has
been fixed by the unalterable divine decree. The Holy Qur’an reads: “God
takes the souls at the time of their death” (39:42). Therefore, the right to
be assisted in dying is also ruled out.
The juridical principle of non-maleficence that states “no harm shall
be inflicted or reciprocated in Islam (la darar wa la dirar fi’l-islam)”
provides the justification of this ruling.
When death approaches, the close family and friends try to support and
comfort the dying person through supplication as well as remembrance of
Allah and His will. The attendance is to help the dying person to repeat
his commitment to the unity of God.
The recently developed Iranian Charter of Patient Rights has empha-
sized the special needs of a dying patient and urged healthcare providers
to be sensitive to these issues. In medical practice in Iran, family authority
is often more influential than the patient’s autonomy. Many physicians
provide information about the patient’s illness, diagnosis, and prognosis
to the family members first, but not to the terminally ill patient. If the
family asks physicians not to tell the patient, many physicians will agree
to this request, and many patients accept this as standard practice.
Therefore, it can be claimed that decision making in healthcare is a family-
centered model. However, based on cultural changes as well as the Patient
Rights Charter which emphasizes patient autonomy, this practice has been
challenged, and there are many patients who would ask for more disclo-
sure from their physicians.
In the case of end-of-life decision making when a person lacks the
capacity for making a decision in Islamic societies, the family has been
given the right to decide on behalf of their beloved ones based on his/her
best interest especially if the patient did not express his wishes. In the case
of minors, also parents can act as a surrogate decision maker for their
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children. In the case of emergencies and unconsciousness, accompanying

family members act as surrogates.
DEALING WITH MEDICAL FUTILITY IN CLINICAL SETTINGS

In Iran, compared to the United States, which has a history of almost
three decades of discussion on medical futility, the issue is relatively in
its primary stage. However, although as mentioned earlier Iran has a rela-
tively young population, the problem of scarce health resources has given
decision making about medical futility a very critical bioethical priority.
In the healthcare system, there is a lack of regulation or any guidelines
to help physicians in dealing with such a sensitive issue. However, dealing
with this dilemma is a common situation in end-of-life care and both
duties — to treat and care and not to prolong death — should be considered
carefully. It is noteworthy that the primary obligation of a Muslim doctor
is to provide care and reduce pain. Therefore, the challenge associated with
the decision about futile treatment and the use of palliative care at the end
of life remains. For example, healthcare providers sometimes struggle with
how to use pain medication appropriately for terminally ill patients because
treating the patient’s pain sufficiently may potentially hasten the patient’s
death. As the decision making in healthcare settings is a family-centered
model in Iran, in general, withholding and withdrawing life support should
be discussed with the family and if the treating physician finds a certain
modality of treatment useless or increasing the suffering of the patient, that
modality of treatment should not be enforced from the beginning. An
essential principle in Islam is that human life has infinite value, and issues
such as aging, health, illness, and death are considered natural parts of
human life and individuals are responsible for their bodies, which belong
to God. The end of life for a dying patient should be as smooth as possible
and any unnecessary invasive procedures that could bring suffering to the
dying patient or his relatives should never be used. Withholding and with-
drawing life support interventions deemed futile is a controversial issue in
Iran. In dealing with a terminally ill patient, different juridical schools of
Islam ruled that when an invasive treatment is necessary to save the
patient’s life, life-saving equipment cannot be turned off unless the physi-
cians are certain about the inevitability of death. On the other hand, Islam
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recognizes that death is an inevitable part of human existence so unneces-

sary treatment should not be provided if it prolongs the final stages (death)
of a terminal illness. It recognizes the possibility of arriving at a collective
decision by those involved in providing care, including the attending physi-
cian and the family, to withhold or withdraw life support intervention
deemed futile. Therefore, a great challenge is to define the moment when
there is no hope for life and the dying process has begun. In recognition of
the fact that not all medical interventions at the end of life are necessary,
the healthcare system has recently been emphasizing the importance of
palliative and hospice care for terminally ill patients. Although the main
reason might be better allocation of limited resources, this in some way is
an appropriate way to avoid medical intervention deemed futile.
Three years ago, the first hospice was established in a large cancer
institute at Tehran University of Medical Sciences to offer palliative care
to terminal patients for whom medical interventions are futile. To address
the needs of those patients, palliative care and hospices are expanding
across the country.
MEDICAL FUTILITY: WHO DECIDES?

For many Muslims, religious beliefs are a fundamental part of both
personal and social existence in their daily life and a major determinant
for healthcare decision making, especially at the end of life. In Islamic
teachings, the importance of inter-human as well as human-divine relations
has been emphasized and Muslims look at these teachings to shape their
relationship with others and the Almighty God. This understanding is the
basis for their end-of-life decision making. As was noted earlier, family
authority is often more influential than the patient’s autonomy.
In addition, based on the dominancy of medical paternalism in health-
care settings, the general concept is that all decisions at the end of life are
in the domain of medical expertise. This general idea among physicians
supports medical futility only based on the concept of physiological futility
and tries to ignore medical futility as a value judgment (qualitative futility).
Therefore, physicians tend to believe that they have a unilateral decision-
making authority not only in any matters regarding the patient’s care, but
also regarding end-of-life care and medical futility.
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An empirical study confirms this willingness for unilateral decision

making. In this study, regarding who can make the decision, the majority
responded that it is the responsibility of the physician in charge to make a
futility decision. However, they emphasized the importance of consulta-
tion with a colleague about medical futility (Bagheri 2011). This study
shows that in case of disagreement between physician and patient/family,
the hospital ethics committee can be used as a resource to resolve the disa-
greement about futile treatment.
If the patient lacks the capacity for decision making, which is quite
frequent in clinical practice with end-of-life patients, in Islamic societies
the family has the right to decide on behalf of their loved ones, based on
his/her best interest, especially if the patient did not express his/her
wishes. In the case of minors, parents are surrogate decision makers for
their children. In such cases, physicians would communicate with the
family members to inform them of their futility decision.
As mentioned, the notion of the right to die has not been recognized,
and therefore patients’ informed decisions and voluntary requests for end-
ing their lives have no legitimacy and physician-assisted death has no
place in clinical decision making.
Physicians’ Attitudes Towards Medical Futility in Iran

In order to collect some empirical data about medical futility in Iran, the
author conducted a study in 2011. The aim was to document medical
professionals’ opinions about medical futility; its definition as well as
its application in healthcare settings in Iran. In this study, first, to docu-
ment physicians’ opinions about medical futility a semi-structured inter-
view among 12 medical specialists from different fields in medicine was
conducted.
Regarding the definition of medical futility, there was controversy not
only regarding how to define it but also what would be a correct translation
of medical futility in the Persian language. There was a consensus among
interviewees that in evaluating futile treatment, the approach should be
case by case and there was no possibility to develop a general diagnostic
protocol for all patients in futility decisions. Regarding who could make
the decision, the majority believed that it was the responsibility of the
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physician in charge to make a decision about whether the treatment at

hand was futile or not. However, the importance of consultation with a
colleague when making decisions on medical futility was emphasized.
Among them, one of the participants expressed that in Iran, the hospital
was also responsible for hospitalized patients, and therefore the physician
in charge should report the case to the medical director of the hospital.
They also emphasized the role of the family in decision making. A ques-
tion was asked about hospitals’ interest in continuing futile treatment in
order to make more money, especially in private hospitals; in response, the
participants did not deny the possibility of such incentives to over-treat.
However, they believed that managing such an end-of-life case would be
so complicated and burdensome for physicians that they would never
decide to keep the patient in the hospital and continue providing futile
treatment for that incentive.
When asked about the influential factors in futility decisions, the inter-
viewees listed four main factors: scarcity of medical resources, the patient’s
suffering, accommodating the family, and religious concerns.
A question was raised to see if the experts believed that developing a
policy or guideline would be useful for physicians in dealing with medical
futility. In response, they all said they believed that it would be helpful for
decision making and would help physicians to defend their futility deci-
sion when talking to the patients’ family. However, one of them raised
concerns about the legality of such a policy and whether the policy or
guidelines would be supported by legislation. One of the interviewees also
was concerned about the working group or committee members who would
be responsible for making the policy or guidelines. Two interviewees
emphasized that such guidelines would be very instrumental in futility
decisions if allocation of scarce resources were at stake.
About the involvement of hospital ethics committees in futility deci-
sions, their opinions were divers. For example, some were concerned that
in Iran, hospital ethics committees were not well developed and therefore
the concern was whether those committees had the capacity and expertise
to be helpful in this regard. They had different opinions on whether phy-
sicians must request for the ethics committee’s involvement in consulta-
tion and decision making or whether they should only notify the ethics
committee about the case and decision made. Another issue raised was
b1545_Ch-13.indd 275 5/27/2013 3:20:23 PM

about the appropriate time at which the hospital ethics committee should
be notified, i.e. as soon as the case happens or afterward. When asked
whether in medicine there was a point beyond which it could be claimed
that continuing treatment was just delaying the process of the patient’s
death and not prolonging the patient’s life, they said they believed that in
medical practice, a distinction should be made between an intervention
that may prolong life, from interventions that only delay death and cause
suffering. However, they also referred to the religious perspective and
said that this should be checked with religious experts as well. One of the
participants, who had an extensive religious background, said that delaying
the patient’s death in itself was prolonging life and had to be followed.
In the next step of the study, two group discussions were organized to
discuss the issue in more detail. Participants were mostly medical specialists
as well as experts in law, ethics, and Islamic Shari’a. A question was
designed to discuss physicians’ authority for unilateral decision making
on futile medicine. The consensus was that physicians should have such
an authority for decision making. However, they emphasized that because
of the sensitivity of the issue as well as the importance of the patient’s/
family’s trust, it was better to consult with another physician for a second
opinion. Regarding the hospital ethics committee’s involvement, they said
that first the physician should communicate with the patient’s family, and
in case of disagreement between them, the issue could be referred to the
hospital ethics committee to resolve the disagreement. In this part of the
study, a model on how to approach medical futility in clinical settings was
developed. In both group discussions, participants emphasized the impor-
tance of education for medical professionals on medical futility and deci-
sion making.
The last part of the study was a consultative workshop which discussed
and finalized the suggested model for cases of medical futility. According
to the suggested model, the physician should inform the patient/family
about his futility decision and, if they accept the physician’s decision,
they can proceed based on their shared decision. In case of disagreement
between physician and patient/family, the case can be referred to the
hospital ethics committee. To resolve the problem, in the first step, the
committee can hold a meeting with the patient’s family and other involved
parties. Accordingly, if the patient/family accepts the physician’s
b1545_Ch-13.indd 276 5/27/2013 3:20:23 PM

decision, it will be considered a shared decision, and if not, the hospital

ethics committee will provide its recommendation to the parties involved.
The consensus was that the ethics committee’s recommendation would be
followed.
RELATED LAW AND REGULATIONS

In Iran, the interaction between health policy makers and religious leaders
has established a framework to develop related legislation in healthcare,
such as reproductive health, abortion, brain death and organ transplanta-
tion, as well as end-of-life decision making.
Currently, there is no particular law or regulation to govern medical
futility in Iran as there is a lack of professional guidelines on how to deal
with futile treatments. However, the necessity of having a medical proto-
col or guidelines to help them in futility decision making is getting more
attention among physicians as well as healthcare policy makers.
In terms of end-of-life issues in general, the Iranian Patient Rights
Charter can be cited as a new set of developed guidelines helping patients,
their family, and healthcare professionals to deal with the end of life prop-
erly. The Patient Rights Charter was compiled with a comprehensive
approach in 2009 and adopted by the Ministry of Health and Medical
Education. This Charter aims to elucidate the rights of recipients of health
services as well as observing ethical standards in medicine. The Charter
has been formulated in the framework of 5 chapters and 37 articles includ-
ing its vision and an explanatory note. The Charter’s five chapters are on
(1) the right of receiving suitable services, (2) the right to access to desir-
able and enough information, (3) the right to choose and to decide freely
about receiving healthcare, (4) the right to privacy and confidentiality, and
finally (5) the right to access an efficient system of dealing with com-
plaints which are explained in Articles 14, 9, 7, 4, and 3, respectively
(Parsapour et al. 2010). Chapter 1 of the Charter emphasizes that “Every
individual has the right to receive appropriate health care services” with
“respecting human dignity, cultural values, and religious beliefs”. In deal-
ing with terminally ill patients at the end of life, it calls for “providing
comfort for terminally ill patients if death is imminent. Comfort refers to
decreasing patients’ suffering and pain, to observe their mental, social,
b1545_Ch-13.indd 277 5/27/2013 3:20:23 PM

spiritual and moral requirements at the time of death. Dying patients are
entitled to be accompanied by a person of their choice.”
As mentioned earlier, the definition of death affects some health poli-
cies, especially end-of-life policies such as futile treatment and withdrawal
of life-sustaining treatment. In terms of brain death, in Iran, the notion of
brain death as an alternative to human death has not been recognized in the
legislation called the Brain Death and Organ Transplantation Act. The Act,
which was ratified by the Parliament in 2000, authorizes organ removal for
transplantation from a brain-dead patient without confirming that brain
death is equal to human death. Therefore, the ventilator can be withdrawn
from a brain-dead patient, not because he is a dead person, or providing
treatment is futile, but because his organs can be transplanted to another
patient with his prior consent. However, if the case is not a suitable candi-
date for organ donation, this Act cannot be applied and it falls into a gray
zone and is subject to controversy in decision making.
END-OF-LIFE CARE AND EUTHANASIA

In Islamic society, the concept of the right to die as it has been acknowl-
edged in Western society has not been accepted. According to the Qur’an,
life is a divine trust and cannot be terminated by any form of human inter-
vention. Its term has been fixed by the unalterable divine decree. The Holy
Qur’an reads: “God takes the souls at the time of their death” (39:42).
Since the end-of-life decision is through divine decree, the Islamic Shari’a
refuses to recognize the individual’s right in that matter (Sachedina 2005).
Therefore the current notion of the right to die has not been recognized;
and the right to be assisted in dying, whether through passive or active
means, is also ruled out. The juridical principle of non-maleficence that
states “no harm shall be inflicted or reciprocated in Islam” (la darar wa
la dirar fi’l-islam) provides the justification of this ruling. Therefore, it is
impossible to justify the euthanasia decision from a religious point of
view. From a strict theological viewpoint, suicide trades a transient,
unbearable life in this world for an even more horrible, eternal one
beyond. In the Shari’a such actions are forbidden, along with less drastic
measures of self-harm (Sachedina 2009, p. 169).
b1545_Ch-13.indd 278 5/27/2013 3:20:23 PM

There are, however, two situations in the treatment that could be

interpreted as passive assistance in allowing a terminally ill patient to die,
as Sachedina explains. The first is using painkillers to relieve physical
pain and psychological distress, with no intention to kill the patient, but
which could shorten the patient’s life. As long as the situation does not
involve an intention to cause death, a medical intervention to provide
necessary treatment for the relief of pain or other symptoms of serious
physical distress is not regarded as criminal and is permitted in Islamic
law. The second situation is in relation to withdrawing treatment, whether
pursuant to a refusal of a death-delaying treatment or through mutual and
informed decision making by patient, physician, and other parties involved
in providing care for the patient. Although in this case there is an intention
to allow the person to die when it is certain that death will result from its
omission, this is not a culpable act under Islamic law. According to him,
there are no other grounds for the justifiable ending of a terminally ill
person’s life, whether through voluntary active euthanasia or physician-
assisted suicide (Sachedina 2009, p. 170).
About suicide, the Qur’an is very clear: “do not kill yourselves as
God has been to you very merciful” (4:29). Taking away life should be
the domain of the One who gives life. There is pain and suffering at the
terminal end of an illness, but there is reward from God for those who
patiently persevere in suffering (39:10 and 31). Therefore, there is no
room for suicide or assisted suicide in Islam.
A study among patients in Tehran university hospitals in 2009 showed
that these patients had some degree of acceptance about passive voluntary
euthanasia (Hasanzade-Hadad et al. 2011).
Another study, which was a descriptive-analytical study among 233
students at Tehran University, showed that the acceptance of euthanasia
was very low (Aghababaei et al. 2011). A study among 20 specialist medi-
cal doctors who work with end-of-life patients showed that there is a
diversity in the definition of an end-of-life patient among different spe-
cialists; for example a neurologist defines it as a brain-dead patient while
a nephrologist considers a chronic renal patient as an end-of-life patient.
But almost all participants emphasized the role of the patient’s family and
the physician’s clinical judgment in decision making (Kazemian 2008).
b1545_Ch-13.indd 279 5/27/2013 3:20:23 PM

In the Islamic tradition, instead of contemplating ways to end one’s life,

either by refusal of life-support treatment or by requesting to die with
active assistance, Muslims afflicted with illness are advised to ask God to
forgive their sins and pray for an opportunity to have a fresh start with
restored health. In the current discussion about passive euthanasia and
medical futility, the main question is at what point medical intervention
can be considered a delay in the process of the patient’s death, instead of
prolonging the patient’s life. However, in Iran, a challenge for physicians
in dealing with medical futility is how to convince the patient’s family that
withholding futile care is not euthanasia. The intention is not to hasten
death; it is, instead, to accept death, in a reasonable and peaceful manner.
CONCLUSION
In the Islamic Republic of Iran, the issue of medical futility in clinical
settings is gaining more attention, not because of the aging population but
because of the scarcity of health resources.
This article showed how, in an Islamic society such as Iran, religious
beliefs are fundamental in end-of-life decision making. The understanding
of the concepts of health, disease, life, and death shape our understanding
of the aim of medicine and determine how far medical interventions are
necessary and useful and when they are futile. Based on the traditional
paternalistic view, with the predominant model of the physician-patient
relationship, there is a tendency among physicians toward unilateral
decision making about medical futility. Nonetheless, consulting with a
colleague about futility decisions and informing the patient’s family about
the decision have been considered important in dealing with these cases.
In making decisions about futile treatment the four primary factors
influencing decisions are the scarcity of medical resources, the patient’s
suffering, accommodating the family, and most importantly religious
concerns about impermissibly hastening death. In dealing with medical
futility, it is crucial to develop professional guidelines. In addition to
guidelines, however, there is a great need for professional as well as
public education about end-of-life issues in general and medical futility
in particular.
b1545_Ch-13.indd 280 5/27/2013 3:20:23 PM

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INDEX
abandon 42 Arab culture 248

abortion 19, 211, 265 arbitrarily 186
Abu Dhabi 255 artificial 265
access to care 20 feeding 243
active euthanasia 90, 158, 174, nutrition 28
181, 279 ventilator 196
advanced healthcare 164 assisted reproduction 39, 232
advanced directive 15, 35, 51, assisted suicide 30, 45, 136,
119, 150, 181, 256 138, 158, 279
advanced malignancy 178 Australia 119
Affordable Care Act 32 autonomy 18, 60, 167, 182,
aged population 182 209
aggressive treatment 22, 152, Autopsy 189
239 Avicenna 265
aging population 125, 145
AIDS 86 Baby K 22
aim of medicine 280 bad news 105
alleviation of suffering 40, 41, barbiturates 68
258 bedside 159
American laws 22 Beijing 176
anencephaly 22 Belgium 59
animism 150 beneficence 209, 254
anti-ageism 236 bereavement 106
antibiotics 132 best interest of the patient 191
283
b1545_Index.indd 283 5/27/2013 3:20:37 PM

284 Index
bioethics 35, 105, 107, 155, cerebral infarct 257

197, 206, 227 cerebro-vascular accident 149,
birth rate 146 183
blood transfusion 123 chemotherapy 167
bodily integrity 129 China 163
brain Chinese
death 41, 112, 150, 265 culture 163
function 152 medicine 164
tumour 235 Christian doctrine 108
brain-dead donor 189 chronic
Brazil 35 disease 233
Brazilian Criminal Code 45 pain 102
Brazilian healthcare system 37 clinical
breast cancer 24, 267 circumstances 134
Brussels 62 death 47
Buddhism 173, 182 deterioration 133
burnout 106 ethics consultation 149
judgment 207, 279
cancer 100, 183 practice 43
children’s 267 settings 182
clinic 102 code of conduct 177
patient 71, 102, 113, 149, code of ethics 126, 190
164, 268 coercion 50
research 102 comatose
treatment 77, 102 patient 257
capitation 11 state 151
cardiac comfort
arrest 24, 129 care 215, 252
attack 149 measures 255
death 150 commodification 239
disease 183 communication skills 54, 106
rhythm 120 community participation 37,
cardiopulmonary arrest 151 230
cardio-respiratory arrest 50 comorbidity 133
cardiovascular disease 65 compassion 45, 243
cell therapy 232 competency 235
b1545_Index.indd 284 5/27/2013 3:20:37 PM

Index 285
comprehensive care plan 132 determination of death 217

concept diabetes 24, 183, 267
of death 270 dialysis 255
of futility 85, 139 dignified death 107
confidentiality 109, 154, 172, dignity 43, 93
277 disability 235
Confucianism 154, 182 disagreement 74, 274
consciousness 23 disclosure 177
consensus 17 discomfort 53
copayment 122 disease management 115
cost-benefit analysis 73 disproportional futility 73
cost containment 221 disproportionate treatment 254
cost-effective care 63, 122 divine
criminal decree 278
law 45 trust 278
liability 139 doctor-patient relationship 40,
critically ill patient 190 77, 234
cultural do-no-harm 167, 265
barriers 149 do-not-resuscitate (DNR) 24,
values 240, 277 35, 50, 51, 72, 206, 238
double effect 69, 138
dead donor rule 220 Duchenne muscular
death with dignity 10, 190 dystrophy 195
debilitating disease 149 dwarfism 27
decision-making 21, 62, 91, 183 dying
capacity 237 patient 18, 105, 252, 271
Declaration of Helsinki 113 process 12, 50, 127, 174
deep sedation 68 with dignity 126
definition of death 112, 251, dyspnea 53
278 dysthanasia 35
delay death 195, 276
dementia 236 economic futility 73
democracy 61 elderly patient 234
deontology 41, 105, 167 emotional
depression 94 barrier 149
deterioration 24 support 106
b1545_Index.indd 285 5/27/2013 3:20:37 PM

286 Index
empathy 106 extraordinary

empirical bioethics 206 intervention 125
end-of-life 59, 85, 181, 263 life 189
care 12, 119, 145, 201 treatment 93, 198
decisions 54, 149, 247
ethics 163, 235 factual judgment 264
expenditure 268 fact/value dichotomy 14
issues 38, 247 fair allocation 209
patients 268 fairness 167
policies 278 family
practices 70 authority 273
treatment 49, 101 planning 231
ends of medicine 18 fatal outcome 39, 105
end-stage disease 151 fee-for-service 11, 62,
essential medical care 122 146
ethical filial piety 182, 187
awareness 39, 49 financial incentives 12
concerns 51, 131 Flanders 62
conflict 41 free choice 62
dilemma 238 free market 11
guidelines 217 full code 54
issues 182 futile
principles 18, 167 care 11, 123, 155
reflection 44, 207 intervention 240, 252
values 265 medicine 99, 163
ethicist 196 treatment 19, 36, 42, 60, 86,
ethics committee 24, 153, 237 121, 159, 191, 210, 228,
Europe 59 254, 263
euthanasia 30, 36, 40, 95, 107, futility
112, 136, 145, 163, 167, 235, 257 decision 274
evaluative judgment 14 determination 136
evidence-based medicine 60, judgment 222
128, 212 policy 27
experimental treatment 16
expert opinion 15 gatekeeper 124
explicit request 69 general practitioner 123
b1545_Index.indd 286 5/27/2013 3:20:37 PM

Index 287
genomics 39 hospital
Georgia 23 admissions 123
geriatric ethics board 134
care 234 ethics committee 21, 191,
medical 103 274
gestational age 213 Hudson, Sun 27
Gilgunn, Catherine 24 human
global bioethics 206 death 47, 278
goals of care 130 dignity 48, 108, 124, 178,
good death 36, 107, 121, 126, 277
136, 188, 241, 258 rights 92, 99, 170
guardian 199 suffering 89
Han Dynasty 186 imminent death 53, 149, 195,

hastening death 136, 280 258
health incentives 46, 275
check-up 184 incompetent patient 28, 135, 150
expenditure 146, 229 incurable disease 42, 173
insurance 101, 267 indigenous communities 126
promotion 184 individualistic 11
resource allocation 172 individual rights 271
resources 147 ineffective treatment 74
services 95 inevitable death 153
healthcare infanticide 187
delivery 63 infant mortality 228, 230, 249
expenditure 184 infectious disease 229
professional 50, 266 informed consent 12, 49, 93,
provider 42 153, 172, 235
Heaven-Earth dualism 185 institutional policy 259
Hokkaido 151 integrity 43
Holy Qur’an 250 intensive care units 50, 90, 119,
homecare team 115 123, 182, 237
homicide 107, 112, 158 international bioethics 205
hospice care 65, 149, 163, 183, intolerable pain 208
273 intravenous feeding 239
hospices 123 intrinsic value 151
b1545_Index.indd 287 5/27/2013 3:20:37 PM

288 Index
invasive treatment 134 life-prolonging treatment 30,

involuntary euthanasia 136, 241 126, 213
Iranian Charter of Patient life-saving 77
Rights 271 life-saving care 135
irreversible condition 195 life-saving medical
Islam 248, 265 intervention 111
Islamic lifespan 62, 146
bioethics 253 life support 22, 76, 237, 272
civilisations 227 life support measures 253
ethics 258 life-sustaining technologies 20
law 254, 279 life-sustaining treatment 26, 47,
perspective 250 90, 181, 264
Shari’a 276 life-threatening 63
society 263 living wills 48, 91, 150
lung cancer patient 240
Japan 145
Japanese penal code 151 malaria 249
just allocation 209 malignant neoplasm 149
justice 209 malignant tumor 102, 167, 177
managed care 212
karma 186 Massachusetts 24
kidney dialysis 167 materialistic world 185
Korea 181 maternal mortality 230
Korean meaningless treatment 168
morality 198 measles 249
society 197 mechanical ventilation 52, 127,
150, 255
Latin America 35 Medicaid 11
lethal effect 68 medical
Levshina 102 abortion 232
life abbreviations 69 care 100
life expectancy 38, 85, 120, 146, community 102
164, 168, 183, 201, 228, 249 costs 87, 91, 263
life-extending intervention 29 decisions 29, 197
life prolongation 19, 61 education 266
life-prolonging care 13 ethics 72, 86, 105, 209
b1545_Index.indd 288 5/27/2013 3:20:37 PM

Index 289
examinations 147 claim 15

expenditure 166 duty 29
expenses 101 effects 110
fact 14 integrity 93
futility 30, 35, 60, 86, 99, judgments 159
119, 145, 163, 181, 205, principles 109
227, 247, 248, 263 requirements 278
indication 71 suffering 43
insurance 166 mortality rate 50, 65
interventions 31, 110, 234, multiple organ failure 193
247, 263, 264 multiple sclerosis 268
judgment 155, 194 muscle relaxants 68, 158
law 113, 227 Muslim civilization 265
needs 132 Muslims 29, 249
obligation 89
paternalism 49, 273 nanotechnology 39
profession 63 National Ethics Committee
protocol 277 196
services 12 natural death 107, 194
sterilisation 232 negative consequences 86
technologies 31 negative rights 18, 61
Medical Deontology 39 negligence 139
Medical Deontology Code 94 Netherlands 59
Medicare 11, 121 neurological criteria 259
medicinal products 101 New Zealand 132
mental next of kin 125, 134
capacity 256 Nitschke, Philip 138
deterioration 106 no-code decision 257
merciful care 99 noncompliance 46
mercy killings 112, 138, 258 noninvasive ventilation 132
metastasis 257 non-maleficence 124, 177, 209,
monotheism 270 254, 271
moral non-urgent care 122
arguments 18, 210 non-voluntary euthanasia 136,
behavior 108 241
beliefs 21 normative futility 9, 60
b1545_Index.indd 289 5/27/2013 3:20:37 PM

290 Index
not-for-resuscitation 125 passive euthanasia 114, 137,

Nuremberg Code 113 174, 200, 239, 242
nursing passive voluntary
care 63, 106 euthanasia 279
homes 101, 123, 176, 183 paternalism 40, 60, 149, 209,
250
omission 159 paternalistic 40
oncology 104 view 280
Oregon 30 patient
organ advance directive 153
donation 123, 189, 239 autonomy 49, 124, 181,
failure 120 191, 207, 234, 254, 271
removal 278 autonomy 49
transplant 150 beneficence 253
transplantation 265 best interests 105, 109, 128,
Orthodox Jews 29 131, 160
orthothanasia 36 capacity 134
out-of-pocket 63 competence 236
payment 267 dignity 91, 152
over-treatment 147, 170, expressed 43
218 integrity 105
interests 19, 111, 135
pain 53 judgments 130
clinics 115 patient’s best interests 105,
relief 102, 114, 258 109, 128, 131, 160
painkillers 94, 238, 279 patient’s capacity 134
palliative preferences 65, 123, 128,
care 42, 99, 120, 123, 149, 153
163, 218, 247, 252, 272 right 18, 21, 42, 158, 240, 241
medicine 36, 99, 101, 183 rights movement 12
sedation 68, 208 self-determination 130
paraplegia 195 suffering 275
paraplegic 242 transfer 123
parenteral values 50, 87, 130
feeding 132 welfare 53
hydration 137 wishes 30
b1545_Index.indd 290 5/27/2013 3:20:37 PM

Index 291
patient-centered 13 treatment 110

patient-doctor encounter 210 principle
patient-physician 153 of autonomy 91
relation 20 of beneficence 124
payment system 63 of benevolence 167
permanent vegetative state of fidelity 18
255 of necessity 265
persistent vegetative state 21, privacy 93, 154, 172, 277
106, 192 process of dying 23, 36, 48, 86,
Pirogov, Nikolai 106 107
physician-assisted death 59, professional
274 autonomy 30
physician-assisted suicide 181, codes 92
279 ethics 167
physician judgments 18, 207
authority 276 standards 139, 155
decisions 24 pro-life
judgment 158 advocates 28
paternalism 239 groups 10
refusal 18 prolongation of death 127
unilateral decision 264 prolonging
physician-patient 280 care 214
physiological life 139, 276
effect 127 treatment 149
function 120 Prophet Muhammad
futility 9, 60, 73, 208, 273 251
Pirogov, Nikolai 106 Protestants 29
positive right 61 proxy decision makers 255
power of attorney 130 psychological
premature infant 206 distress 279
prenatal care 266 support 103
preserve life 10 public
preterm infant 213 health 100, 211, 266
prevention 102, 168 policy 28
preventive public’s best interests 254
medicine 100, 164 pulmonary embolism 257
b1545_Index.indd 291 5/27/2013 3:20:37 PM

292 Index
qualitative futility 73, 208, 273 resuscitation

quality of life 53, 75, 85, 106, attempts 133
128, 149, 168, 208, 228, 269 orders 119
quantitative futility 73 rights
Qur’an 269 movements 12
theory 167
rationing 86 right
Rawls 20 to death 108
Razes 265 to die 108, 172, 241,
Razetti, Luis 89 271
Razetti’s Oath 89 to health 39, 93
refusal of treatment 126, 130, to life 92, 112
239 to live 242
rehabilitation 104 to refuse 240
reimbursement policy 166 Roman Catholic Church 184
relational autonomy 125 Roman Catholics 29
relationship 153, 280 routine practice 125
relief of pain 279 Russia 99
religious Russian Federation 99
concerns 275 Russian Orthodox Church 108
experts 276
factors 259 sanctity of human life 258
values 52 Saudi Arabia 254
renal scarce
carcinoma 257 health resources 269
function 167 medical resources 16
reproductive technologies resources 95, 209
265 scarcity 16
requesting to die 280 Schiavo, Terri 28
resentment 188 scientific experiments 93
resource allocation 17, 52 second opinion 124
respect secular liberals 29
for autonomy 124 self-assessment 235
for life 241 self-determination 158
respiratory arrest 127, 132 serious illness 131
resuscitation 24, 25, 252 severe dementia 130
b1545_Index.indd 292 5/27/2013 3:20:37 PM

Index 293
shamanism 186 terminal

Shanghai 176 cancer 103
shared decision 276 care 169, 184
shared decision-making 74, 155, care ethics 176
215 diseases 45, 252
Shari’a law 248, 250 illness 51, 94, 99, 243
Shinto 150 patients 39, 40, 90, 136, 190
side effects 125 phase 139
sister of mercy 106 sedation 167
slow euthanasia 68 stage 93
social terminally ill 23
consensus 159 patients 149, 247, 250
justice 17, 145 tertiary health services 267
policy 20 Texas 26
right 92 thalassemia 267
status 101 therapeutic
spiritual support 114 aims 218
standard benefit 125, 221
of care 19 goal 72, 105
practice 271 medicine 231
treatment 236 obstinacy 36, 60
stem cell transplant 140, 234 options 193
St. Petersburg 102 outcome 23
stroke 149 procedures 48, 94
suffering 27, 41, 272 time of death 201
suicide 95, 107, 112, 183, 241, Traditional Chinese
258, 278 Medicine 165
surrogate 24 traditional medical ethics 169
decision maker 130, 271 traditional medicine 183, 188
decisions 150 traffic accident 183
survival time 128 transcendental 186
Switzerland 205 transplantation medicine 211
transplant tourism 150
taboo 168, 188 treatment 159
Taoism 182 treatment effect 16
telemedicine 39 treatment goals 128
b1545_Index.indd 293 5/27/2013 3:20:37 PM

294 Index
treatment options 110 vegetative state 19

treatment preferences 133 veil of ignorance 20
triage 236 Venezuela 85
truth 50 ventilation support 235
tuberculosis 229 viability 213, 215, 216
Turkey 227 Virginia 26
virtues 154
unilateral vital organs 49
decision-making 155, 263 voluntary
decisions 135, 177 consent 106, 109
treatment withdrawal 27, 28 euthanasia 136, 241
United Arab Emirates 247
United States 10 Wallonia 62
universal health insurance 62 Wanglie, Helga 21
untreatable pain 194 “weak” paternalism 77
useless treatment 87 withdrawal of life support 28
utilitarian arguments 213 withdrawal of treatment 91, 126,
153, 167, 191, 238, 254, 269,
vaccination 63 279
value judgments 75, 158, 209, withholding therapy 254, 269
220, 228
value-laden decision 216 Zoroastrian 265
value of life 174
b1545_Index.indd 294 5/27/2013 3:20:37 PM

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Medical Futility

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Alireza Bagheri, MD, PhD

Daniel Callahan, PhD

Imperial College Press

Library of Congress Cataloging-in-Publication Data

British Library Cataloguing-in-Publication Data

Copyright © 2013 by Imperial College Press

Typeset by Stallion Press

For Maryam, Sareh and Ava

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About the Editor ix

Chapter One So-Called Futile Care: The Experience

Chapter Two The Reality of Medical Futility

Chapter Three Medical Futility and End-of-Life

Chapter Four The Concept of Medical Futility in Venezuela 85

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Chapter Five Medical Futility in the Russian Federation 99

Chapter Six Medical Futility in Australia 119

Chapter Seven Medical Futility in Japan 145

Chapter Eight Medical Futility in China:

Chapter Nine Medical Futility in Korea 181

Chapter Ten Medical Futility from the Swiss Perspective 205

Chapter Eleven Medical Futility in Turkey 227

Chapter Twelve Medical Futility in the United Arab Emirates 247

Chapter Thirteen Medical Futility in Iran 263

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ABOUT THE EDITOR

Alireza Bagheri-chimeh, MD, PhD, is assistant professor of medicine

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Said Abuhasna is Clinical Professor in Medical Health Sciences at the

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Berna Arda is Professor of Medical Ethics and History of Medicine, School

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Medicine, Kumamoto, Japan. During his PhD course on bioethics he has

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William Saad Hossne is Emeritus Professor at the State University Sao

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I would like to thank my colleagues for their scholarly contributions to

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IS THE FUTILITY DEBATE FUTILE?

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healthcare providers and patients’ family members. Such guidelines can

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importance of determining the appropriate time to transition to compre-

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The contribution from Korea explains how withdrawing futile treat-

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