Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information Continuous Sedation at the End of Life Continuous sedation until death (sometimes referred to as terminal sedation or palliative sedation) is an increasingly common practice in end-of-life care. However, it raises numerous medical, ethical, emo- tional and legal concerns, such as reducing or removing of conscious- ness (and thus potentially causing ‘subjective death’), the withholding of artifi cial nutrition and hydration, the proportionality of the sed- ation to the symptoms, its adequacy in actually relieving symptoms rather than simply giving onlookers the impression that the patient is undergoing a painless ‘natural’ death, and the perception that it may be functionally equivalent to euthanasia. This book brings together contributions from clinicians, ethicists, lawyers and social scientists, and discusses guidelines as well as clin- ical, emotional and legal aspects of the practice. The chapters shine a critical spotlight on areas of concern and on the validity of the jus- tifi cations given for the practice, including in particular the doctrine of double effect. SIGRID STERCKX is a professor of ethics at Ghent University and at the Vrije Universiteit Brussel (VUB) in Belgium. K ASPER RAUS is a postdoctoral researcher at Ghent University, Belgium. FREDDY MORTIER is a professor of ethics at Ghent University, Belgium. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information Cambridge Bioethics and Law This series of books was founded by Cambridge University Press with Alexander McCall Smith as its fi rst editor in 2003. It focuses on the law’s com- plex and troubled relationship with medicine across both the developed and the developing world. Since the early 1990s, we have seen in many countries increasing resort to the courts by dissatisfi ed patients and a growing use of the courts to attempt to resolve intractable ethical dilemmas. At the same time, legislatures across the world have struggled to address the questions posed by both the successes and the failures of modern medicine, while international organisations such as the WHO and UNESCO now regularly address issues of medical law. It follows that we would expect ethical and policy questions to be integral to the analysis of the legal issues discussed in this series. The series responds to the high profi le of medical law in universities, in legal and medical practice, as well as in public and political affairs. We seek to refl ect the evidence that many major health-related policy debates in the UK, Europe and the international community involve a strong medical law dimension. With that in mind, we seek to address how legal analysis might have a trans-jurisdictional and inter- national relevance. Organ retention, embryonic stem cell research, physician assisted suicide and the allocation of resources to fund health care are but a few examples among many. The emphasis of this series is thus on matters of public concern and/or practical signifi cance. We look for books that could make a difference to the development of medical law and enhance the role of medico-legal debate in policy circles. That is not to say that we lack interest in the important theoretical dimensions of the subject, but we aim to ensure that theoretical debate is grounded in the realities of how the law does and should interact with medicine and health care. Series Editors Professor Margaret Brazier, University of Manchester Professor Graeme Laurie, University of Edinburgh Professor Richard Ashcroft, Queen Mary, University of London Professor Eric M. Meslin , Indiana University A list of books in the series can be found at the end of this volume. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information Continuous Sedation at the End of Life Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx , Kasper Raus and F reddy Mortier © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information University Printing House, Cambridge CB2 8BS, United Kingdom Published in the United States of America by Cambridge University Press, New York Cambridge University Press is part of the University of Cambridge. It furthers the University’s mission by disseminating knowledge in the pursuit of education, learning and research at the highest international levels of excellence. www.cambridge.org Information on this title: www.cambridge.org/9781107039216 © Cambridge University Press 2013 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 2013 Printed in the United Kingdom by MPG Printgroup Ltd, Cambridge A catalogue record for this publication is available from the British Library Library of Congress Cataloguing in Publication data Continuous sedation at the end of life : ethical, clinical, and legal perspectives / edited by Sigrid Sterckx, Kasper Raus, Freddy Mortier. pages cm. – (Cambridge bioethics and law) Includes bibliographical references and index. ISBN 978-1-107-03921-6 (hardback) 1. Terminal sedation. 2. Terminal care – Law and legislation. 3. Terminally ill – Psychology. I. Sterckx, Sigrid, editor of compilation. II. Raus, Kasper, editor of compilation. III. Mortier, Freddy, editor of compilation. R726.C6725 2013 616.02′9–dc23 2013009518 ISBN 9 78-1-107-03921-6 Hardback Cambridge University Press has no responsibility for the persistence or accuracy of URLs for external or third-party internet websites referred to in this publication, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate. © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information Contents List of fi gures page v ii Notes on contributors viii Acknowledgements xvii 1 Introduction 1 SIGRID STERCKX, KASPER RAUS AND FREDDY MORTIER 2 Continuous sedation until death: state of the art 29 SOPHIE M. BRUINSMA, JUDITH A.C. RIETJENS AND AGNES VAN DER HEIDE 3 Death by equivocation: a manifold defi nition of terminal sedation 47 DAVID ALBERT JONES 4 Palliative sedation: clinical, pharmacological and practical aspects 65 JOSEP PORTA-SALES 5 Clinical aspects of palliative sedation 86 N IGEL P. SYKES 6 Understanding the role of nurses in the management of symptoms and distress in the last days of life 100 ELEANOR WILSON AND JANE SEYMOUR 7 Principle and practice for palliative sedation: gaps between the two 116 D AVID ORENTLICHER 8 The legal permissibility of continuous deep sedation at the end of life: a comparison of laws and a proposal 132 E VELIEN DELBEKE v © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information vi Contents 9 The Dutch national guideline on palliative sedation 149 JOHAN LEGEMAATE 10 Continuous deep sedation at the end of life: balancing benefi ts and harms in England, Germany and France 160 R ICHARD HUXTABLE AND RUTH HORN 11 Can the doctrine of double effect justify continuous deep sedation at the end of life? 1 77 K ASPER RAUS, SIGRID STERCKX AND FREDDY MORTIER 12 Palliative sedation, consciousness and personhood 202 TIMOTHY HOLAHAN, THOMAS CARROLL, CLAUDIA GONZALEZ AND TIMOTHY E. QUILL 13 The ethical evaluation of continuous sedation at the end of life 218 J OHANNES J.M. VAN DELDEN 14 Terminal sedation and euthanasia: the virtue in calling a spade what it is 228 S Ø REN HOLM 15 Terminal sedation: recasting a metaphor as the ars moriendi changes 2 40 MARGARET P. BATTIN References 2 50 Index 279 © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information Figures 2.1 Frequency of continuous deep sedation until death in different European countries page 33 4.1 Pharmacological fl owchart proposed by the Royal Dutch Medical Association Guideline for Palliative Sedation, 2009 7 7 4.2 Pharmacological fl owchart proposed by the Spanish Society for Palliative Care Guideline for Palliative Sedation, 2005 77 5.1 Classifi cation of end-of-life care sedation (Morita et al. 2001c) 90 5.2 Comparison of percentage of patients spontaneously awake in sedated and non-sedated groups during the last week of life (derived from Fainsinger et al. 1998) 92 5.3 Comparison of percentage of patients spontaneously awake in sedated and non-sedated groups during the last week of life (derived from Kohara et al. 2005) 93 5.4 Comparison of percentage of unrousable patients in sedated and non-sedated groups during the last week of life (derived from Fainsinger et al. 1998) 93 11.1 Boyle’s application of the Standard Vatican Case 189 11.2 Euthanasia Case 189 11.3 Non-Standard Vatican Case 1 93 11.4 T erminal Sedation Case 193 11.5 Non-Standard Vatican Case and life-shortening scheme 1 197 11.6 Non-Standard Vatican Case and life-shortening scheme 2 1 97 11.7 DDE applied to CDS without ANH 198 11.8 Non-Construable Case 2 00 vii © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information Contributors MARGARET P. BATTIN i s a professor of philosophy and medical eth- ics at the University of Utah, USA. She has authored, co-authored, edited, or co-edited some twenty books, including works on philo- sophical issues in suicide, case-puzzles in aesthetics, ethical issues in organised religion and various topics in bioethics. She has pub- lished two collections of essays on end of life issues, T he Least Worst Death and Ending Life, and has been the lead for two multi-authored projects, D rugs and Justice and The Patient as Victim and Vector: Ethics and Infectious Disease . In 1997, Professor Battin won the University of Utah’s Distinguished Research award, and in 2000, she received the Rosenblatt Prize, the University’s most prestigious award. Her current projects include a comprehensive historical sourcebook on ethical issues in suicide, a volume of puzzle cases about issues in dis- ability and a book on large-scale reproductive problems of the globe, including population growth and decline, teen pregnancy, abortion and male roles in contraception. SOPHIE M. BRUINSMA works as a doctoral researcher at the Department of Public Health of Erasmus Medical Centre, Erasmus University Rotterdam, The Netherlands. She is a sociologist and epidemi- ologist by training. She is involved in an international study (the UNBIASED study) that explores the perspectives of clinical staff and bereaved informal caregivers on the use of continuous sed- ation until death for cancer patients. Her Ph.D. research specifi cally focuses on the experiences of relatives with continuous sedation at the end of life. THOMAS CARROLL , MD, Ph.D., was educated at: Nazareth College, Rochester, New York (BS in Biochemistry); the University of Connecticut, Farmington, Connecticut (MD/Ph.D. Medical-Scientist Training Program); and the University of Rochester, Rochester, New York (Internal Medicine Internship and Residency, Chief Resident Internal Medicine and Fellow in Hospice and Palliative Medicine). viii © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information Notes on contributors ix He will be staying on at the University of Rochester as faculty with appointments in the divisions of General Medicine and Palliative Care. EVELIEN D ELBEKE specialises in healthcare law in the broad sense of the word (e.g. medical liability, medical disciplinary rules, pro- fessional legal advice, bioethical regulations, patient rights, and the like). From 2006 to 2011, she worked as a doctoral researcher in the fi eld of health law at the Faculty of Law of the University of Antwerp, Belgium. In 2011, she obtained the degree of Doctor of Law with a dissertation on the legal aspects of end-of-life care, in which she examined the legal aspects of the various medical end-of-life deci- sions (euthanasia, ending of life without request, assisted suicide, alle- viation of pain and symptoms with a possible life-shortening effect, continuous deep sedation at the end of life, and the withholding or withdrawing of life-sustaining treatment). She compared Belgian law with the laws of The Netherlands, France, Luxembourg, Switzerland, the USA and the UK. She was awarded the prize Andr é Prims for her work. Dr Delbeke is a frequently invited lecturer on these topics. Since 2012, she has been an attorney-at-law with Monard-D’Hulst, a law fi rm specialising in health law. CLAUDIA GONZALEZ was born in Mexico City. She received her medical degree from the Universidad Autonoma de Gaudalaja and completed her Internal Medicine residency at Unity Health System, Rochester, New York. Currently she is doing her Hospice and Palliative Care fel- lowship at the University of Rochester in Rochester, New York. TIMOTHY HOLAHAN attended medical school at the Lake Erie College of Osteopathic Medicine in Erie, Pennsylvania and graduated with a Doctor of Osteopathic Medicine degree in 2009. He then com- pleted his residency in Internal Medicine at the University at Buffalo in Buffalo, New York in 2012. Currently he is completing a com- bined fellowship in palliative care and geriatrics at the University of Rochester in Rochester, New York. During his residency training, he developed a strong interest in the fi eld of palliative care. He was a co-author for a case series with Dr Kerr and Dr Robert Milch that was published in the Journal of Palliative Medicine in 2011, entitled ‘The use of ketamine in severe cases of refractory pain syndromes in the palliative care setting’. Another case series he has contributed to, together with Dr Kerr and Dr Debra Luczkiewcz, describes the use of pentobarbital in the restoration of sleep-wake cycles in refrac- tory delirium. This study is pending publication. He has also spent © in this web service Cambridge University Press www.cambridge.org Cambridge University Press 978-1-107-03921-6 - Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives Edited by Sigrid Sterckx, Kasper Raus and Freddy Mortier Frontmatter More information x Notes on contributors six months as Chief Medical Resident in the University at Buffalo Internal Medicine program. S Ø REN HOLM is a medical doctor and philosopher who generally holds conservative views in relation to euthanasia, physician-assisted sui- cide and other forms of assisted dying. He is a professor of bioeth- ics and medical ethics. Professor Holm directs the Centre for Social Ethics and Policy at the University of Manchester, UK, and holds permanent visiting chairs at the University of Oslo, Norway and the University of Aalborg, Denmark. He is the former Editor in Chief of the Journal of Medical Ethics and the current Editor in Chief of the journal Clinical Ethics . R UTH HORN is an Ethics and Society Wellcome Trust Fellow at the Ethox Centre, University of Oxford, UK. She was awarded a BA in Sociology from Ludwig-Maximilian University Munich (2002), an MA in Sociology from Paris Diderot University (2003) and a Master of Research (2004) and Ph.D. (2009) from the Ecole des Hautes Etudes en Sciences Sociales, Paris. Her doctoral thesis exam- ined the euthanasia debates and end-of-life practices in France and Germany. After conducting postdoctoral research about advance decision-making and discontinuation of life-sustaining treatments in France (funded by the French National Cancer League) at the Ecole Nationale Supé rieure in Paris, Dr Horn completed a postdoc- toral research project on advance directives in England and France (funded by the European Commission) at the University of Bristol. Her general research interest lies in exploring ethical questions raised by medical practices at the end of life, particularly regarding the ten- sions between respect for patient autonomy and physicians’ duty to protect life. She is interested in understanding in which contexts (legal, cultural, socio-historical) these questions emerge in the pub- lic space, and how they are treated in the debates in specifi c countries (UK, France, Germany). RICHARD HUXTABLE is Reader in Medical Ethics & Law and Deputy Director of the Centre for Ethics in Medicine, in the School of Social and Community Medicine at the University of Bristol. Qualifi ed in law and socio-legal studies, his research primarily concerns end-of- life decision-making and surgical ethics, and he has published widely in medical, legal and bioethical journals, as well as engaging with the international media. Richard is the author of Euthanasia, Ethics and the Law: From Confl ict to Compromise (2007) and Law, Ethics and Compromise at the Limits of Life: To Treat or Not to Treat? (2012). He is also co-author, with Dickenson and Parker, of The Cambridge Medical © in this web service Cambridge University Press www.cambridge.org