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Medical Futility
A Cross-National Study
b1545 Medical Futility: A Cross-National Study 27 May 2013 3:14 PM
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CONTENTS
Introduction 1
by Alireza Bagheri
vii
viii Contents
Index 283
ix
CONTRIBUTORS
xi
xii Contributors
Contributors xiii
xiv Contributors
ACKNOWLEDGMENTS
xv
FOREWORD
xvii
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
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
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
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
6 Introduction
Introduction 7
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
Robert M Veatch
SUMMARY
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).