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Physician-Assisted Death in Perspective
Cambridge University Press
9781107007567 - Physician-Assisted Death in Perspective - Assessing the Dutch Experience - Edited by Stuart J. Youngner and Gerrit K. Kimsma
Frontmatter/Prelims

Physician-Assisted Death in Perspective: Assessing the Dutch Experience

This book is the first comprehensive report and analysis of the Dutch euthanasia experience over the last three decades. In contrast to most books about euthanasia, which are written by authors from countries where the practice is illegal and therefore practiced only secretly, this book analyzes empirical data and real-life clinical behavior. Its essays were written by the leading Dutch scholars and clinicians who shaped euthanasia policy and who have studied, evaluated, and helped regulate it. Some of them have themselves practiced euthanasia. The book will contribute to the world literature on physician-assisted death by providing a comprehensive examination of how euthanasia has been practiced and how it has evolved in one specific national and cultural context. It will greatly advance the understanding of euthanasia among both advocates and opponents of the practice.

Stuart J. Youngner, MD, is the Susan E. Watson Professor and Chair of the Department of Bioethics at Case Western Reserve University School of Medicine. Trained as a psychiatrist, Dr. Youngner is a nationally and internationally recognized scholar in biomedical ethics. He has published extensively on topics including end-of-life issues, organ transplantation, and the definition of death.

Gerrit K. Kimsma, MD, MPh, is a practicing physician and philosopher and co-founder of the Department of Metamedicine at the Vrije Universiteit in Amsterdam. His present affiliation is with the Department of Philosophy and Medical Ethics of the St. Radboud University Medical Center in Nijmegen. He is a nationally and internationally recognized scholar in end-of-life issues and serves on the Boards of Cambridge Quarterly of Health Care Ethics, Theoretical Medicine and Bioethics, Medicine HealthCare, and Philosophy.


Physician-Assisted Death in Perspective

Assessing the Dutch Experience

Edited by

Stuart J. Youngner

Case Western Reserve University

Gerrit K. Kimsma

St. Radboud University Medical Center, Nijmegen, the Netherlands


CAMBRIDGE UNIVERSITY PRESS
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Cambridge University Press
32 Avenue of the Americas, New York, NY 10013-2473, USA
www.cambridge.org
Information on this title: www.cambridge.org/9781107007567
© Stuart J. Youngner and Gerrit K. Kimsma 2012

This publication is in copyright. Subject to statutory exception and to the provisions of relevant collective licensing agreements, no reproduction of any part may take place without the written permission of Cambridge University Press.

First published 2012
Printed in the United States of America

A catalog record for this publication is available from the British Library.

Library of Congress Cataloging in Publication data

Physician-assisted death in perspective : assessing the Dutch experience /
[edited by] Stuart J. Youngner, Gerrit K. Kimsma.
p. ; cm.
Includes bibliographical references and index.
ISBN 978-1-107-00756-7 (hardback)
1. Assisted suicide – Netherlands. 2. Euthanasia – Netherlands.
3. Assisted suicide – Moral and ethical aspects – Netherlands.
I. Youngner, Stuart J. II. Kimsma, Gerrit K.
[DNLM: 1. Euthanasia, Active, Voluntary – Netherlands. 2. Attitude
to Death – Netherlands. 3. Health Policy – Netherlands. 4. Physicians –
psychology – Netherlands. 5. Suicide, Assisted – Netherlands. wb 65]
R726.P484 2011
362.17′5–dc22 2011010907

ISBN 978-1-107-00756-7 Hardback

Cambridge University Press has no responsibility for the persistence or accuracy of URLs for external or third-party Internet Web sites referred to in this publication and does not guarantee that any content on such Web sites is, or will remain, accurate or appropriate.


Contents

Contributors
ix
Preface by Gerrit K. Kimsma
xv
Preface by Stuart J. Youngner
xix
Introduction by Stuart J. Youngner and Gerrit K. Kimsma
xxiii
Part I    Background and History
1
1         The Lateness of the Dutch Euthanasia Debate and Its Consequences
James C. Kennedy
3
2         Classifications and Definitions: Dutch Developments
Johan Legemaate
21
3         The Legalization of Euthanasia in the Netherlands: Revolutionary Normality
Heleen Weyers
34
4         The Normative Context of the Dutch Euthanasia Law
Esther Pans
69
5         Dutch Social Groups on “Euthanasia”: The Political Spectrum on Ending Life on Request
Heleen Weyers
82
6         The Dutch Social Fabric: Health Care, Trust, and Solidarity
Margo Trappenburg and Hans Oversloot
99
Part II   Regulation and Practice Deficiencies
121
7         The Unreported Cases
Bregje D. Onwuteaka-Philipsen
123
8         Physician Assistance in Dying Without an Explicit Request by the Patient
Agnes van der Heide
137
9         When Requests Do Not Result in Euthanasia or Assisted Suicide
H. Roeline W. Pasman
147
10        Dutch Euthanasia in Retrospect
John Griffiths
159
Part III  Quality Assurance
179
11        Euthanasia Consultants: Professional Assessment Before Euthanasia and Physician-Assisted Suicide in the Netherlands
Gerrit K. Kimsma
181
12        Reviews after the Act: The Role and Work of Regional Euthanasia Review Committees
Gerrit K. Kimsma and Evert van Leeuwen
192
13        Palliative Care and Physician-Assisted Death
Dick Willems
202
Part IV   Learning from the Practice
213
14        Unbearable Suffering and Advanced Dementia: The Moral Problems of Advance Directives for Euthanasia
Cees M. P. M. Hertogh
215
15        Decision-Making Capacity in Patients Who Are in the Early Stage of Alzheimer’s Disease and Who Request Physician-Assisted Suicide
Ron Berghmans
229
16        Being “Weary of Life” as Cause for Seeking Euthanasia or Physician-Assisted Suicide
Mette Rurup
247
17        Shared Obligations and “Medical Friendships” in Assisted Dying: Moral and Psychological Repercussions Reconsidered
Gerrit K. Kimsma and Chalmers C. Clark
263
18        Depression, Euthanasia, and Assisted Suicide
Marije van der Lee
277
19        End-of-Life Decisions in Children and Newborns in the Netherlands
Pieter J. J. Sauer and A. A. Eduard Verhagen
288
20        Hastening Death Through Voluntary Cessation of Eating and Drinking: A Survey
Boudewijn E. Chabot
305
Part V    The Challenge of Unbearable Suffering
317
21        The Subjectivity of Suffering and the Normativity of Unbearableness
Henri Wijsbek
319
22        Assessment of Unbearable and Hopeless Suffering in Evaluating a Request to End Life
Gerrit K. Kimsma
333
Part VI   Overview
349
23        The Regulation of Euthanasia: How Successful Is the Dutch System?
Govert den Hartogh
351
24        No Regrets
Margo Trappenburg
392
Index
401

Contributors

Ron Berghmans PhD was trained as a psychologist at the University of Utrecht (1979) and received his PhD in bioethics at the Free University of Amsterdam (1992). He works in the Department of Health, Ethics and Society of Maastricht University. His major fields of interest are ethics in mental health care, care for dementia patients, mental capacity, neuroethics, end-of-life issues (euthanasia, assisted suicide), and research ethics. He has been a member of several committees of the Health Council of the Netherlands.

Boudewijn E. Chabot MD, PhD was trained as a psychiatrist and psychotherapist at the Erasmus University in Rotterdam and at the Institute of Psychiatry and Maudsley Hospital in London. He did research in psychotherapy at the University of Amsterdam and later specialized in psychiatry for the elderly. His name has been given to the Dutch Supreme Court case (1994) on physician-assisted dying in a psychiatric patient.

Chalmers C. Clark PhD is Adjunct Associate Professor of Philosophy, Union College, Schenectady, New York. His background is in naturalized epistemology and biomedical ethics. He received his PhD from the Graduate Center of the City University of New York (CUNY) and has been Visiting Scholar at the Institute for Ethics of the American Medical Association; Donaghue Visiting Scholar in Biomedical and Behavioral Research Ethics, Yale University; and Visiting Fellow at the Center for Philosophy and History of Science at Boston University. His interest is to extend epistemological holism into the domain of moral and political thought. The result has been research and publication in several interdisciplinary forms. Current work centers on trust relations in the professions (medicine expecially), the professions as stewards of public trusts, and the role that public trusts play in the basic structure of a free society.

Govert den Hartogh is Professor Emeritus of Ethics and Its History in the Department of Philosophy at the University of Amsterdam. He has also taught in the Faculty of Medicine and the Faculty of Law. He is the author of Mutual Expectations, a Conventionalist Theory of Law (Springer 2002) and the editor of The Good Life as a Public Good (Kluwer 2000), and he has written many articles in moral, legal, and political philosophy and medical ethics. He is a member of the Dutch Health Council and of one of the Regional Review Committees for euthanasia. He is presently writing a book about medical and nonmedical decisions concerning the end of life.

John Griffiths held the chair in sociology of law in the Department of Legal Theory of the Faculty of Law of the University of Groningen from 1977 until his retirement in 2005. He studied philosophy (University of California, Berkeley) and law (Yale Law School) and taught law at, successively, Yale, the University of Ghana, and New York University before accepting his most recent appointment. His theoretical work in sociology of law has largely focused on the effectiveness of regulation. Most of his research and writing has dealt with problems of the regulation of euthanasia and other socially problematic medical behavior.

Cees M. P. M. Hertogh MD, PhD is professor of Geriatric Ethics at the EMGO Institute for Health and Care Research and in the Department of Nursing Home Medicine of the VU University Medical Center, Amsterdam. He is also working as a nursing home physician at the Vivium Zorggroep, Naarderheem, Naarden. His research focuses on ethical issues in the care and treatment of chronically ill elderly people using empirical research methods (empirical ethics). He has gained expertise in care ethics, qualitative research in ethics, end-of-life-decision making, euthanasia in patients with dementia, advance-care planning, and (decisional) capacity. He is also involved in an EC project that aims to develop guidelines for improving elderly participation in clinical research.

James C. Kennedy is Professor of Dutch History since the Middle Ages at the University of Amsterdam. He has specialized in postwar Dutch society, investigating the cultural changes of the 1960s and the advent of euthanasia policies in the 1970s and 1980s. He has also written extensively about political shifts in Dutch public life and the public role of religion in the modern Netherlands. He is currently working on A Concise History of the Netherlands for Cambridge University Press.

Gerrit K. Kimsma MD, MPh is a practicing physician and philosopher and co-founder of the Department of Metamedicine at the Vrije Universiteit in Amsterdam. He is a nationally and internationally recognized scholar in end-of-life issues and serves on the Boards of Cambridge Quarterly of Health Care Ethics, Theoretical Medicine and Bioethics, Medicine HealthCare, and Philosophy.

Johan Legemaate is a professor of health law at the Vrije Universiteit Amsterdam, and as chief counsel to the Royal Dutch Medical Association has been actively involved in Dutch developments and discussions regarding medical decisions at the end of life. Since September 2010 he has been a professor of health law at the University of Amsterdam (Academic Medical Center).

Bregje D. Onwuteaka-Philipsen is associate professor in the Department of Public and Occupational Health and the EMGO Institute at the VU University Medical Center in Amsterdam. She is program leader of the research program “Care and Prevention,” one of the four research programs of the EMGO Institute for Health and Care Research. She also leads the research line “Public Health at the End of Life” at the Department of Public and Occupational Health. Since 1994, she has been involved in the Dutch nationwide studies on medical end-of-life decisions and evaluation of the regulation of euthanasia and physician-assisted suicide that takes place about every five years; she has been the project leader since 2001. She is author or co-author of more than 100 PubMed publications on end-of-life care. In 2008 she won a career award from The Netherlands Organisation for Scientific Research, which enabled her to develop the research program “The Patient Perspective in the Last Phase of Life: Personal Dignity, Preferences and Participation.”

Hans Oversloot is a lecturer in the Department of Political Science, Leiden University. He studied history and political science at Leiden University. His research interests include Russian politics, political philosophy, and Dutch politics. He has published in Acta Politica, The Review of Central and East European Law, and the Journal of Communist and Transition Studies. More information can be found at http://www.fsw.leidenuniv.nl/politicologie/organisatie/medewerkers/oversloot.html.

Esther Pans has written a legal dissertation on the Dutch Law on Euthanasia and Physician-Assisted Suicide (Vrije Universiteit Amsterdam, 2006). This book analyzes the moral considerations underlying Dutch legislation and Dutch case law. She has written several articles on issues regarding the legal aspects of end-of-life decisions, such as physician-assisted suicide in case of dementia or being “weary of life.” She is presently working as a health care–oriented lawyer in Amsterdam and is a member of the Civil Law Department of the Vrije Universiteit Amsterdam.

H. Roeline W. Pasman is a sociologist who works as a senior researcher at the EMGO Institute for Health and Care Research and the VU University Medical Center in Amsterdam. She has research experience in both qualitative and quantitative studies on end-of-life care. She wrote her thesis (2004) on forgoing artificial nutrition and hydration in nursing home patients. Currently, she participates in several (qualitative and/or quantitative) studies regarding end-of-life care, such as a large-cohort study of people with advance directives and an observational study regarding participation of patients in end-of-life decision making.

Mette Rurup is a senior researcher in the Department of Public and Occupational Health of the EMGO Institute for Health and Care Research of the VU University Medical Center. Her thesis (2005) was about requests for assisted suicide from people who are “weary of life” and the incidence and use of advance directives with patients with dementia. Her current research interests also include physicians’ knowledge about opioids and pain management at the end of life, dignity at the end of life as perceived by patients in nursing homes, and the effect of advance directives.

Pieter J. J. Sauer is Professor of Pediatrics at the University of Groningen, Toronto, Canada. From 1986 to 1997, he was Professor of Neonatology in Rotterdam; in 1997 he became Professor of Pediatrics and Chairman in the Beatrix Children’s Hospital, University Medical Center, Groningen. For many years, he has been interested in the ethical aspects of neonatology. He has published a number of papers on this topic, some on behalf of the Ethical Committee of the European Academy of Pediatrics.

Margo Trappenburg studied political science at Leiden University. She is associate professor in the Utrecht School of Governance at Utrecht University and holds an endowed chair at Amsterdam University. Her research interests include patient organizations, patient empowerment, euthanasia, the development of medical professional ethics, and contemporary political philosophy.

Agnes van der Heide MD, PhD is a medical doctor and epidemiologist. After getting her PhD in 1994 with a thesis on the assessment and treatment of early rheumatoid arthritis, she started working in the Department of Public Health at Erasmus Medical Center in Rotterdam. Her main research activities are in the field of end-of-life care and decision making. She has coordinated a large number of regional, national, and international empirical studies on the practice of euthanasia, palliative sedation, and care for the dying.

Marije van der Lee PhD works as head of the Science Department of the Helen Dowling Institute for psycho-oncology. Between 2000 and 2005, she studied the effect of depression on the risk for a request for euthanasia in terminally ill cancer patients and the consequences of depression and euthanasia on grief in the family members. She defended her dissertation “Before Death and Thereafter” in May 2005.

Evertz van Leeuwen PhD is head of the section Ethics, Philosophy and History of Medicine of the Scientific Institute for Quality of Healthcare: IQ Healthcare at the Radboud University Nijmegen Medical Centre. He was a member of the Regional Euthanasia Committee in North Holland from 1999 to 2005. In 1999, he became a member of the Dutch Central Committee on Research Involving Human Subjects CCMO. He is on the editorial board of Theoretical Medicine and Bioethics (co-editor from 1995 to 2002) and is an International Board Member of the Cambridge Quarterly of Health Care Ethics.

A. A. Eduard Verhagen finished law school (health law) in 1987 and medical school at the University of Utrecht, the Netherlands, in 1991. He subsequently trained to become a pediatrician in Amsterdam (EKZ/AMC). He moved to Groningen in 2000, where he was appointed clinical director of the Paediatric Department of the University Medical Centre Groningen. Verhagen was one of the authors of the “Groningen Protocol,” published in the New England Journal of Medicine in 2005. He finished his PhD on end-of-life decisions in Dutch neonatal intensive care units in 2009.

Heleen Weyers is a lecturer in Legal Theory at the University of Groningen. She teaches sociology of law, philosophy, and political science. She specializes in the history of the process of legal change concerning euthanasia in the Netherlands. Another main topic of her research is the emergence and effectiveness of smoking bans.

Henri Wijsbek works in the Department of Philosophy at the University of Amsterdam and at the Health Council of the Netherlands. He is interested in Dutch euthanasia practice, in particular how the unbearable suffering criterion should be applied.

Dick Willems is a former general practitioner and philosopher. He is Professor of Medical Ethics at the Academic Medical Centre of the University of Amsterdam. He has been a coordinator of the Center for the Development of Palliative Care at the Free University, Amsterdam. His research interests include ethical aspects of genetics, end-of-life issues, and home-care technology. He is the President of the Netherlands Association for Bioethics and Director of the Centre for Ethics and Health. He is a member of the Council for Public Health and Health Care (RVZ) and of the Ethics and Law Standing Committee of the Dutch Health Council.




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