Assisted Death in Europe and America Four Regimes and

Their Lessons

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 ACKNOWLEDGMENTS

The text in Appendices 1 and 2 is reprinted with permission from Paul

Schotsmans and Tom Meulenbergs, eds., Euthanasia and Palliative Care
in the Low Countries (Leuven, Belgium: Peeters, 2005).
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 PREFACE

At present, seven jurisdictions in the world, with various restrictions, have

legalized the practice of assisted dying for those afflicted with inordinate
suffering and allow physician-assisted suicide (PAS) and/or voluntary
euthanasia. Three of these jurisdictions—the states of Washington and
Montana in the United States, and Luxembourg in Europe—legalized
assisted death during 2008 and 2009, respectively, thus providing only
limited information on how these regimes will actually work. In this study
I therefore concentrate on the four regimes of assisted death that have
been functioning for many years and for which we have a substantial body
of data, as well as observational research—the Netherlands, Belgium, and
Switzerland in Europe, and Oregon in the United States. During the
1990s, PAS was legal for less than two years in the Northern Territories of
Australia; four patients died under the act before the legislation was
invalidated by the Australian federal parliament. I do not deal with this
short-lived regime because of the limited lessons that can be derived from
four cases.
Scholars write books for a variety of reasons. I undertook work on the
topic of assisted death in part because I have arrived at a stage in my life
when the issue of dignified and compassionate end-of-life care is of more
than theoretical interest to me. Writing this book was, for me, not only a
matter of addressing an issue of contemporary interest and importance
but also a means of clarifying my own thinking. My attitude to assisted
dying was generally sympathetic before I started work on the book, and
has remained so after completion. At the same time, I have also learned of
the many ways in which decisions for assisted death can go wrong, and
I have become more aware of the crucial importance of adequate
viii Preface

safeguards against abuse. That such safeguards can be instituted effec-

tively, without being unduly onerous or undermining the discretion of
doctors, is one of the important lessons gained from experience with a
legalized scheme of assisted death on the part of the Netherlands,
Belgium, and Oregon.
The question of how to handle end-of-life dilemmas continues to be
hotly debated everywhere, and the literature on the issue is enormous. A
search of PubMed for “assisted death” undertaken in 2009 yielded 7,709
citations; Google Scholar has about 760,000 references for the same sub-
ject. Most of this literature deals with the ethical, medical, or legal aspects
of assisted death; a paucity of writing provides a detailed and reliable
account of the way the four existing regimes are actually working, and
many partisans, on both sides of the controversy, cite existing data selec-
tively or, at times, willfully distort the empirical evidence in order to
strengthen their case. Moreover, much of this literature is out-of-date
because it was composed before the Netherlands and Belgium legalized
voluntary euthanasia in 2002.
My purpose here is to fill this gap, and, even though I do address the
lessons that can be derived from the existing regimes of assisted death in a
concluding chapter, this book is largely empirical and descriptive. Facts
cannot settle a moral debate. Nevertheless, accurate factual information is
the precondition of any well-founded moral argument, and a largely
expository and analytical study can therefore make a contribution to the
philosophical debate on the issue, as well as provide guidance to the
makers of public policy.
It a pleasant duty to express my gratitude for the generous assistance I
have received from many quarters. A number of European scholars with
expertise in the issue of assisted death took time off from their busy
schedules and, in fruitful conversations and follow-up correspondence,
helped me better understand the regimes their countries had instituted.
In the Netherlands, I am indebted to Johannes J.M. van Delden, Agnes
van der Heide, Paul J. van der Maas, M.J.P.A. Janssens, and Bregje
Onwuteaka-Philipsen; in Belgium, to Lieve van den Block and Chris
Gastmans; in Switzerland, to Georg Bosshard and Andreas Frei. I am
grateful also to officials of organizations involved in one way or another
with the issue of assisted death who made themselves available for my
 Preface ix

questions, to whit, the Association pour le droit de mourir dans la dignté

in Brussels, Belgium, and the Schweizerische Gesellschaft für palliative
Medizin, in Zurich, Switzerland. Special thanks are due both branches of
the Swiss right-to-die organization Exit for their gracious cooperation. I
had useful conversations with President Hans Wehrli-Streiff and Heidi
Vogt Daeniker, head of the department Freitodbegleitung, of Exit—
Vereinigung für humanes Sterben, Zurich. MS. Vogt also provided me
with valuable documentary material. As it is customary to state, none
of the above individuals or organizations are responsible for the opinions
and conclusions reached in this book, which remain my personal
responsibility.

Washington, D.C.
January 2010
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 CONTENTS

List of Tables xiii

Abbreviations xiv

1. Introduction 3
Why Assisted Death Has Become an Important
Public Policy Issue 3
The Euthanasia and Assisted-Suicide Underground 10
The Aims of This Study 15

2. Euthanasia and Physician-assisted Suicide in

the Netherlands 18
The Path to Legalization 18
The Law of 2002 Decriminalizing Euthanasia and
Physician-assisted Suicide 26
Empirical Data on Euthanasia and Physician-assisted Suicide:
Who, When, Why, Where, and How? 30
Problems in the Practice of Euthanasia and
Physician-assisted Suicide 37
1. Failure to Report Cases of Euthanasia and Physician-assisted
Suicide 37
2. Ending Life Without Explicit Request of the Patient 40
3. Termination of Life in Pediatric Cases 43
4. Assisted Death for Patients with Mental Suffering 48
5. Can Palliative Care Eliminate the Need for Assisted Death? 55
The Dutch Regime of Euthanasia and
Physician-assisted Suicide Assessed 62
xii Contents

3. Voluntary Euthanasia in Belgium 69

How Belgium Legalized Euthanasia 69
The Law on Euthanasia of May 28, 2002 74
The Practice of Euthanasia Since 2002 78

4. Assisted Suicide in Switzerland 88

Exit—German Switzerland: Association for a
Humane Death 89
Exit—Association pour le Droit de mourir dans la Dignité/
Suisse Romande 102
Dignitas 105
Other Right-to-Die Organizations 109
The Public Debate on Assisted Suicide 111

5. Physician-assisted Suicide in Oregon 126

A Legal Obstacle Course 126
The Death with Dignity Act 128
Ten Years of Physician-assisted Death 132
Criticism and Problem Areas 140

6. Assisted Death as a Last Resort 147

Lessons from Four Regimes of Assisted Death 147
A Model Statute for Physician-assisted Suicide 153
Dilemmas and Promise of Legalized Assisted Death 158

Appendices 161
1. The Dutch Termination of Life on Request and Assisted Suicide
(Review Procedures) Act 161
2. The Belgian Act on Euthanasia of 28 May 2002 172
3. Swiss Criminal Code of 1937 (as of October 1, 2008) 182
4. The Oregon Death with Dignity Act: Oregon Revised Statutes 183

Notes 199

Works Cited 228

Index 243
 LIST OF TABLES

Tables

2.1 Frequency of Termination of Life as Proportion of All Deaths

According to Year 32
2.2 Patients’ Characteristics and Death Rate in Requested Cases of
Euthanasia and Assisted Suicide (as Percentage of all Medical
Decisions Concerning the End of Life [MDEL]) 33
2.3 Percentage of Physicians Participating in Euthanasia and Assisted
Suicide 35
2.4 Type of Physician Performing Euthanasia and Assisted Suicide
(as Percentage of all Medical Decisions Concerning the End of
Life [MDEL]) 35
2.5 Percentage of Physicians Ending Life without a Patient’s Explicit
Request 42
3.1 Cases of Euthanasia 79
3.2 Characteristics of Patients Choosing Euthanasia 79
3.3 Decisions of the Control Commission 79
4.1 Disposition of Suicide Applications 1996 94
4.2 Requests for Assisted Death and their Disposition
(2004–2007) 103
5.1 Characteristics and End-of-Life Care of 341 Patients
(1998–2007) 132
5.2 Prescription History under the Death with Dignity Act 135
6.1 Frequency of Assisted Death (Physician-assisted Suicide or
Euthanasia) as Percentage of All Deaths 148
 ABBREVIATIONS

AAHPM American Academy of Hospice and Palliative Medicine

ALS Amyotrophic Lateral Sclerosis (a.k.a. Lou Gehrig’s disease)
ADMD Association for the Right to Die in Dignity
BBAB Belgian Advisory Committee on Bioethics
CAL Commission on the Acceptability of Medical Behavior that
Shortens Life
CHF Swiss Franc
DEA Drug Enforcement Administration
DWDA Death with Dignity Act
EURELD European End-of-Life Study
FPZV Flemish Palliative Care Federation
GP General Practitioner
KNMG Royal Dutch Medical Association
LAWER Life-terminating Act without Explicit Request
LEIF Forum for End-of-Life Information
MDEL Medical Decisions Concerning the End of Life
NaP Natrium-Pentobarbital
NEK-CNE National Advisory Commission on Biomedical Ethics
OSPA Oregon State Pharmacists Association
PAS Physician-assisted Suicide
SAMS Swiss Academy of Medical Sciences
SAPC Swiss Association for Palliative Care
SCEN Support and Consultation in the Netherlands
ASSISTED DEATH IN EUROPE
AND AMERICA
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 1
INTRODUCTION

This book deals with varieties of assisted death. Physician-assisted suicide

(PAS) involves a physician helping a patient to commit suicide by provid-
ing a lethal medication. In cases of voluntary euthanasia, the physician
administers or injects the lethal drug. In both types of assisted death, it is
the patient—usually but not always afflicted with a terminal illness—who
voluntarily seeks death, and both PAS and euthanasia therefore can be
regarded as a species of suicide, most often the suicide of an inordinately
suffering person near death.

Why Assisted Death Has Become an Important Public Policy Issue

The word euthanasia, derived from the Greek, means a “good death.”
Although the term euthanasia was coined in the 17th century, the idea of a
“good death” has roots in classical antiquity. Many Greeks and Romans
sought a painless end to their lives, and physicians often provided assis-
tance. The Hippocratic Oath forbade the participation of physicians in
acts aimed at shortening the end of life, but there is general agreement
that this injunction did not represent the thinking of Greek classical soci-
ety. Mainstream Greek physicians of ancient times, writes Margaret Pabst
Battin, “regarded it as part of their role to provide patients whom they
could not treat with a lethal drug.”1 Suicide was a widely accepted option.
In the eyes of the Stoic philosophers, to live nobly also meant to die nobly,
and this implied the right to choose one’s moment of departure from
this earth. As Seneca insisted: “The lot of man is happy, because no one
4 Assisted Death in Europe and America

continues wretched by his fault. If life pleases you, live. If not, you have a
right to return whence you came.”2 Living as such is not the good, the
Stoic philosopher wrote, “but living well is. The wise man therefore lives
as long as he should, not as long as he can.”3
From the fourth century on, the Christian Church strongly condemned
suicide, and euthanasia was regarded as an interference with the divine
prerogative to give and take life. A good death now came to be seen as
that of a person who willingly and tranquilly accepted death and whatever
suffering was linked to the act of dying.4 The idea of a good Christian
death—the calm acceptance of death with the moral support of family
and clergy—held sway until well into the 20th century, when rapid
advances in medical treatment and technology began to enable physicians
to prolong life to a previously unknown extent.
Unfortunately, in many instances, these new techniques have meant
not the saving of life but the prolongation of the act of dying. With the
help of elaborate machinery, it is now possible to keep fatally ill patients
alive in a condition that many consider worse than death. Instead of dying
in one’s home, surrounded by family and friends, many persons now
linger for an inordinate amount of time in hospitals, sometimes practi-
cally invisible through a thicket of cables and tubes. In some cases, indi-
viduals are unconscious for weeks or even months, being kept alive by
means of artificial breathing and feeding. In the eyes of many, medical
technology has run out of control and often actually contributes to more
suffering. Patients, it is now argued increasingly, should be entitled to
choose death when pain and physical and mental deterioration under-
mine the possibility of a dignified and meaningful life.
An early attempt to achieve the legalization of voluntary euthanasia
took place in the state of Ohio in 1906. A bill before the legislature’s
Committee on Medical Jurisprudence proposed that an adult of sound
mind, who was suffering from extreme physical pain without hope of
recovery, might petition his physician for relief. If three other physicians
agreed that the case was hopeless, the patient would be put out of pain
and suffering with minimum discomfort. The bill failed, and in 1937 a
similar proposal died in a committee of the Nebraska legislature. A year
later, in 1938, the Euthanasia Society of America was formed. The goal of
the Society was to work for the legalization of euthanasia in “the belief
 Introduction 5

that with adequate safeguards, the choice of immediate death rather than
prolonged agony should be available to the dying.”5
During the following years, the horrors that characterized the Nazi
regime’s attempt to weed out the unfit gave euthanasia a bad name. Using
the “slippery slope” argument, opponents of the right to die argued that
any attempt to legalize assistance in dying would inevitably lead to the
elimination of the weak and disabled, as had happened in Nazi Germany.
This mode of argument made no attempt to show what exactly would
cause the slide to a new Nazism,6 but the scare tactic was effective never-
theless. It was not until the 1960s that the Euthanasia Society resumed its
pre-war activism. In 1967, it formed the Euthanasia Education Council
that, using the slogans “Death with Dignity” and the “Right to Die,” began
a campaign to influence public opinion in favor of euthanasia. In an
attempt to improve its image, in 1975 the Euthanasia Society of America
changed its name to Society for the Right to Die, and in 1978 the Euthana-
sia Education Council became Concern for Dying. Two years later, Derek
Humphry founded the Hemlock Society and openly advocated
voluntary euthanasia and assisted suicide. The new organization grew
rapidly, and by 1992 had more than 46,000 members. In 2004, the Hem-
lock Society changed its name to End of Life Choices, and a year later, it
merged with Compassion in Dying to form what today is the largest
American right-to-die organization, Compassion and Choices.
Contributing to the spread of new attitudes toward end-of-life choices
has been society’s emphasis on freedom of choice and the right to deter-
mine our lives to the maximum extent possible. By the late 1980s, more
than 100 books and a far larger number of articles had appeared dealing
with PAS and euthanasia. Courses on death and dying have proliferated
on college campuses. By 1989, a survey conducted by the Chicago-based
National Opinion Research Center (NORC) showed that 69% of Ameri-
cans agreed with the statement that doctors should be allowed by law to
end a patient’s life by some painless means if the person has an incurable
disease and if the patient and family request it. A year later, a Roper poll
asked, “When a person has a painful and distressing terminal disease,
do you think that doctors should be allowed by law to end the patient’s life
if there is no hope of recovery and the patient requests it?” Sixty-four
percent of respondents answered this question affirmatively and only
6 Assisted Death in Europe and America

24% were opposed. The Roper poll revealed little difference between those
who identified with a religious tradition and those who did not, or among
major denominations.7
In 1991, Humphry published his primer for suicide, Final Exit: The
Practicalities of Self-Deliverance and Assisted Suicide, and this book
remained on the New York Times best-seller list for 18 weeks. Within five
years, Final Exit sold more than 600,000 copies, and there was general
agreement that these sales indicated a profound shift in public attitudes
toward assisted suicide. As one middle-aged woman who bought the book
put it, “When I’m dying, I want to be in control.”8
In the Cruzan case of 1990, the U.S. Supreme Court endorsed the view
that the liberty protected by the due-process clause of the 14th amend-
ment guaranteed the right of patients to refuse unwanted medical treat-
ment, and today this and other cases have established the right of patients
to hasten death by refusing to eat or drink or decline the artificial delivery
of food and water.9 This ruling has relevance for advance directives
that instruct doctors on desired end-of-life care. Under the Patient Self-
Determination Act of 1990, Medicare providers, such as hospitals or nurs-
ing homes, must provide patients with information about their rights
under the state laws governing advance directives.10
Although many physicians consider advance directives such as living
wills as absolutely binding, others disregard these instructions. To be sure,
not all such disregard is reprehensible. There is evidence to show that
preferences for various types of end-of-life treatment may vary over time.
Patients often become increasingly tolerant of unpleasant states of health
as their illness progresses. In view of the documented instability of the
wishes expressed in advance directives, doctors may feel justified to act
according to what they consider to be in the best interest of the patient.11
Still, the fact that few physicians have been held to account for continuing
aggressive treatment against the wishes of patients has added strength to
the demand that patients themselves be allowed to decide when to die
with dignity with the help of PAS or euthanasia.12
The failure of many physicians to pay adequate attention to the allevi-
ation of pain has been another factor that has spurred interest in seeking
assistance in dying. “Despite the efficacy of opioids and a commitment by
the medical profession to treat pain,” Timothy Quill and Diane Meier