EUTHANASIA AND THE ETHICS OF A DOCTOR’S DECISIONS: An Argument against Assisted Dying 9781350186217, 9781350186224, 9781350186255, 9781350186231

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EUTHANASIA AND THE ETHICS OF A DOCTOR’S DECISIONS

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ALSO AVAILABLE FROM BLOOMSBURY A Critical Introduction to the Ethics of Abortion, by Bernie Cantens An Ethical Guidebook to the Zombie Apocalypse, by Bryan Hall Environmental Ethics, by Marion Hourdequin Introduction to Applied Ethics, by Robert L. Holmes Morality and Ethics at War, by Deane-Peter Baker

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EUTHANASIA AND THE ETHICS OF A DOCTOR’S DECISIONS An Argument against Assisted Dying

OLE HARTLING TRANSLATED FROM DANISH BY TIM DAVIES, LONDON

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BLOOMSBURY ACADEMIC Bloomsbury Publishing Plc 50 Bedford Square, London, WC1B 3DP, UK 1385 Broadway, New York, NY 10018, USA 29 Earlsfort Terrace, Dublin 2, Ireland BLOOMSBURY, BLOOMSBURY ACADEMIC and the Diana logo are trademarks of Bloomsbury Publishing Plc First published in Great Britain 2021 Copyright © Ole Hartling, 2021 English language translation © Tim Davies, 2021 Ole Hartling has asserted his right under the Copyright, Designs and Patents Act, 1988, to be identified as Author of this work. Cover design by Louise Dugdale Cover image © ivan101/iStock All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage or retrieval system, without prior permission in writing from the publishers. Bloomsbury Publishing Plc does not have any control over, or responsibility for, any third-party websites referred to or in this book. All internet addresses given in this book were correct at the time of going to press. The author and publisher regret any inconvenience caused if addresses have changed or sites have ceased to exist, but can accept no responsibility for any such changes. A catalogue record for this book is available from the British Library. Library of Congress Cataloging-in-Publication Data Names: Hartling, Ole Johannes, author. Title: Euthanasia and the ethics of a doctor’s decisions : an argument against assisted dying / Ole Hartling ; translated by Tim Davies. Description: New York, NY : Bloomsbury Academic, 2021. Identifiers: LCCN 2020050396 (print) | LCCN 2020050397 (ebook) | ISBN 9781350186224 (paperback) | ISBN 9781350186217 (hardback) | ISBN 9781350186231 (ebook) | ISBN 9781350186248 (epub) Subjects: LCSH: Euthanasia–Moral and ethical aspects. Classification: LCC R726 .H378 2021 (print) | LCC R726 (ebook) | DDC 179.7–dc23 LC record available at https://lccn.loc.gov/2020050396 LC ebook record available at https://lccn.loc.gov/2020050397 ISBN: HB: 978-1-3501-8621-7 PB: 978-1-3501-8622-4 ePDF: 978-1-3501-8623-1 eBook: 978-1-3501-8624-8 Typeset by Newgen KnowledgeWorks Pvt. Ltd., Chennai, India To find out more about our authors and books visit www.bloomsbury.com and sign up for our newsletters.

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To my friend, Chris Jephson

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CONTENTS

Foreword by Iona Heath  ix

Introduction  1 1 The obviousness of the question  7 2 Death as option or destiny  17 Opinion polls on euthanasia  20

3 Active or passive euthanasia  27 Acting and omitting to act  36 Man’s power over life and death  39 The bathtub example  41

4 Medical technology  47 Life is rounded with a sleep  49

5 The two main arguments in the pro-/anti-legalization debate  59 Avoiding unbearable suffering  61 Respect for the right to self-determination  76 Inherent problems of autonomy  88 Autonomy versus paternalism  96

6 Rational versus irrational thinking  99 7 The doctor–patient relationship  109

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Contents

8 The slippery slope  125 9 Solemn arguments  145 Dignity  147

10 The language  155 More recent euphemisms  161

11 Is euthanasia an impossible notion?  167 12 Another possibility  173 A short conclusion  183 Bibliography  185 Index  193

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FOREWORD

Iona Heath Retired general practitioner Former President of the Royal College of General Practitioners Ole Hartling has spent much of his life as a familiar of the dying: he has seen it, touched it, treated it, smelled it, listened to it and endured it. Most of all, he has thought deeply about it. He served as the president of the Danish Council of Ethics for five years and has had a long career as a specialist in nuclear medicine, a discipline that involves the use of radioactive substances in the diagnosis and treatment of life-threatening disease. He has cared for two wives through lengthy terminal illnesses and all of these profound experiences have helped him to understand that the holy grail of self-determination in dying and death is an illusion, and have made him a deeply committed opponent of active euthanasia and physician-assisted dying. I  have had the privilege of listening to him and discussing and writing with him. In pursuit of autonomy and self-determination, many of those who argue in favour of assisted dying seem to want to control the process of their dying and the timing of their death; at the same time, they seem to forget that dying is part of living. Joy and despair are perennial not only for the living but also for the dying, and not even the dying can know the precise detail of their future.

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The American philosopher Martha Nussbaum argues in her book The Fragility of Goodness that uncertainty, contingency and unpredictability disrupt the gloomy predictability of linear determinism and are what make life worth living: The human being, who appears to be thrilling and wonderful, may turn out at the same time to be monstrous in its ambition to simplify and control the world. Contingency, an object of terror and loathing, may turn out to be at the same time wonderful, constitutive of what makes a human life beautiful and thrilling. (p. 52) Because we do not understand everything and because we cannot control the future it is possible to live, even while dying. In his book Mortality, Immortality and Other Life Strategies the Polish-British sociologist Zygmunt Bauman describes the power of death to defy human control: Of all the adversities of earthly existence, death soon emerged as the most persistent and indifferent to human effort. … The hard, irreducible core of human impotence in a world increasingly subject to human will and acumen. The last, yet seemingly irremovable, relic of fate in a world increasingly designed and controlled by reason. (p. 134) Despite this evident truth, many people continue to express a desire to be in control of their dying although it is striking that this aspiration is most often expressed by those whose relative affluence has allowed them to feel in control of their living. The terrible longing for control over our lives and deaths leads to the recurrent denial of the complexity and uncertainties of life and

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to the pursuit of simplistic and almost miraculous solutions to our predicament. These have included the systematic medicalization of many of the risks of living, and the suggestion of physician-assisted dying serves to extend that medicalization to death itself. Medicine doesn’t seem to know when to stop, and more and more is able to keep people alive despite drastically reducing the quality of those lives. These processes frighten people who then seem to resort to pleas for assisted dying as the only apparent way out of this particular iatrogenic impasse. This then becomes the ultimate technical solution to the enduring existential challenges in finding meaning in the inevitabilities of suffering, loss and death. For Ole, this situation evokes these lines from the Danish poet Piet Hein:  ‘There’s a great similarity between having solved a problem and not having grasped it at all!’ All of Ole Hartling’s work has been informed by a strong sense of society’s responsibilities to the vulnerable in terms of both inclusion and justice. Perhaps this runs in the family:  his father served both as prime minister of Denmark, legislating the provision of day care and recreation for children and young people, and later as the United Nations High Commissioner for Refugees. In this book, Ole argues that state-sponsored euthanasia or physician-assisted dying poses a terrible threat to the vulnerable again in terms of both inclusion and justice. We need to acknowledge that there are situations where government has a responsibility to resist the views of the majority and the issue of capital punishment perhaps provides the best example. Many states have abolished capital punishment despite a large majority of the population being in favour of it, and they have done this because of the issue of the

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terrible and irreversible harms which can so easily follow a wrongful conviction. Euthanasia and physician-assisted dying pose similar ethical problems. All such situations demand courageous leadership. In the UK, the Royal College of General Practitioners (RCGP) is facing a potential legal challenge orchestrated by two of its senior members who want the College to end its opposition to assisted dying. The ruling council of the College decided in February this year to maintain its opposition despite a major member survey noting an apparent reduction in support for the stance – from 77 per cent in 2013 to just 47 per cent – although the two surveys were not directly comparable. The most recent survey showed that 40 per cent would support a change in stance to support assisted dying ‘providing there is a regulatory framework and appropriate safeguarding’, while a further 11 per cent wanted the RCGP to take a neutral stance going forward. A legal letter sent on 18 September 2020 claimed that ‘by continuing to support the current prohibition on assisted dying as a result of a flawed and unlawful decision-making process, the College is failing in its obligations to properly represent the views of its members’. This statement would seem to misunderstand the nature of representative democracy within the College where delegates are not mandated. Bizarrely, in a year when Covid-19 has been providing more assisted dying than most people can stomach, the British Medical Association seems to have been caught in a similar impasse. The BMA surveyed its members on this issue for the first time in February 2020 but publication of the results was severely delayed, ostensibly because of the need for them to be fully discussed at an annual representative meeting. The 2020 meeting had to be first postponed and then held remotely in circumstances which were not to be conducive to full

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discussion of such a serious issue. The results were finally published in October 2020 showing ambiguous and indecisive views, not dissimilar to those expressed by members of the RCGP. One has to wonder whether the leadership of the BMA will find itself struggling with the same challenges. All this turmoil makes this book all the more needed and relevant, as it carefully and convincingly constructs the argument that statesponsored physician-assisted dying threatens the vulnerable, the disabled and the despairing and that humanity’s response to the challenge of unbearable suffering must amount to more than simply enabling the elimination of the sufferer.

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1

Introduction

It is an age-old question whether terminally ill patients can access life-ending medications with the aid of a physician. Some may think that this question is connected with modern times and modern technology, but it is probably as old as medicine itself. Thus, the father of medicine, Hippocrates (c.460–370 bc), must also have been familiar with the problem, for he seems to have taken a position on it in the original pledge, the Hippocratic Oath: ‘I will use treatment to help the sick according to my ability and judgement, but never with a view to injury and wrongdoing. Neither will I administer a poison to anybody when asked to do so, nor will I suggest such a course.’ A few countries have legalized euthanasia, including physicianassisted suicide, but the empirical data from those countries seems to be interpreted differently. Some state that ‘it works well’; others warn against misuse of the possibility of euthanasia and against dependence on it. The debate on assisted dying seems to have burgeoned all over the Western world in recent years, and it follows generally the same lines in all countries. The main arguments for legalization comprise the possibility of providing the means to fight unbearable suffering and

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the respect for self-determination. Since both arguments appear selfevident, it may be worthwhile to look into them more closely. Hence, the main arguments against legalization in my view are to assess whether the answer to suffering is to remove the sufferer or whether self-determination (autonomy) may to some extent be an illusion in this matter. Let me state as a starting point that I do not adhere to numinous arguments resting on and expressing the sanctity of life, that life is inviolate or that life is a gift. These lines of thought are metaphysical and easily become dogmatic and hence unconvincing (see further in Chapter 9, p. 145). In my eyes the crucial arguments against a law on euthanasia are secular in nature and mainly comprise demonstrating that the customary arguments in favour of legalizing assisted dying are untenable. That, I hope, will be apparent in the following pages. Time and again the legalization of euthanasia is supported from a ‘democratic’ perspective, that opinion polls show that legalization is what people want. The British Medical Journal has recently devoted itself to the debate, and the editor, Fiona Godlee, reiterated that there is approximately 80 per cent support for assisted dying among the UK population, while suggesting that it was time to poll UK doctors on the question (Godlee 2018). One of the authors, Jacky Davis, in the same British Medical Journal edition repeated the appealing words that patients with terminal illness ‘should be allowed a death with dignity on their own terms’. She also wondered why the views of the UK medical profession were so out of step with those of their patients, 82 per cent of whom support legalization (Davis 2018). But an immediate question to be asked is whether the 82 per cent are indeed patients. Or are they in fact ordinary, healthy people who cannot

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imagine themselves being crippled, blind, deaf, suffering, on dialysis, demented and dependent on care, in which case they would rather die – hence the majority favouring legalization is to be expected. The idea of polling British doctors was repeated in February 2019 (Godlee 2019) and was later scheduled for February 2020 (Rimmer 2020). Just in advance of the poll the general practitioner Iona Heath and I had written an Opinion that appeared in the British Medical Journal, ‘Assisted dying – a form of abandonment?’ (Heath and Hartling 2020). The results of the survey were published in October 2020 (see p. 119) (BMA 2020). In February 2020, the UK council of the Royal College of General Practitioners (RCGP) performed an all-member consultation (2020). Based on this, the RCGP Council voted that the College should continue to oppose a change in the law (for more details see p. 118). A number of years ago I was asked to teach a course for doctors on clinical decision-making theory. My topic was ‘The ethical components of the doctor’s decisions’. A  short while before, I  had been reading an article on active euthanasia in the Netherlands. I had read it with mounting surprise, but the information was true. Dutch doctors had themselves been involved in drawing up guidelines for euthanasia and were now the ones performing the task too  – and with increasing frequency since the 1970s. The course participants had to be told about it, obviously, owing to the associated ethical dilemmas. The Dutch practice was still relatively unknown in Denmark at the time. I was keen to learn the participants’ reaction. Was I the only one not up to speed with that development? Was it something we Danes

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could also expect and also had to get used to? How could such a practice be introduced, bearing in mind the recent history of Europe? Was I being too sensitive by distancing myself from the ideas? But the doctors reacted as I did. Back then, they doubted it could be right. Nowadays it is perhaps worth remembering that it was felt to be shocking only a few years ago. Most medical associations in, for example, the UK, the United States and Denmark as well as the World Medical Association (WMA) are opposed to the notion that under certain circumstances and within certain rules, doctors can be expected to take away their patients’ lives. But whereas the majority of doctors used to be opposed to the legalization of euthanasia – when subjected to the same polls as the general population  – there may have been a gradual shift in attitudes in recent years. That the Netherlands, Belgium, Luxembourg and Switzerland allow euthanasia or assisted dying in Europe, and that the state of Victoria in Australia and some US states and Canada have adopted the practice in their jurisprudence may present itself as a fait accompli such that doctors too give up their resistance and reluctance while recognizing that they will be expected to be first in line in committing the act. In addition, a shift towards a greater emphasis on the patient’s autonomous wish as the primary basis for euthanasia seems to have taken place in the Netherlands (Kouwenhoven et al. 2019). My stance is that I  am opposed to legalization while also understanding the wish to do good and respecting self-determination. However, I  sometimes find the debate shallow and skewed in the media, while often depicting horrible ends. This ignores the fact that even ancient research has shown that the vast majority of us will

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die peacefully. I  therefore want to introduce new elements into the debate as well as to show that the question is not as straightforward and simple as it is often made out to be. I have included both my own personal experiences and my experience as a medical doctor, while also encompassing a number of patients’ narratives and references from the medical literature. At the Danish Council of Ethics, of which I  was chairman from 2003 to 2007, we debated the question of euthanasia in depth over some three years. To start with, the seventeen members of the Council, of diverse educations and backgrounds, were dubious and divided in their opinion as to whether legalization should be recommended. However, over the course of the discussions, all members ended up agreeing to ‘disrecommend’ such a step (Danish Council of Ethics 2006). Similarly, it is my experience that when people do not just answer a quick poll but go into the matter in more depth, they develop doubts as to whether legalization is so beneficial after all. Therefore, it is my hope that this book will help raise awareness of the difficulties and drawbacks of taking such a definitive step towards patients and our fellow human beings.

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1 The obviousness of the question

While on an emergency call-out, I  met a patient, Robert, who told me about his difficult but changeable situation. He also said he had written about it in a letter to some friends. From what the patient related, the letter might have sounded like this: Dear Friends! Thank you for your lovely Christmas missive. It’s good to hear you’re doing well over there. I had been meaning to reply for a very long time, but the only thing I managed to write was ‘Dear Friends’. The days passed, however, and I  could not find the energy to write. As you know, for a long time now I have been in pain, from virtually the whole of my body. It had been getting worse and worse. I realized it was my prostate cancer flaring up. At one point I was completely desperate and afraid, almost panicky and endlessly tired, because I couldn’t sleep either. Six weeks ago I was admitted as an emergency. I asked the doctor straight out whether they could put an end to my misery. I had spoken to the children; they could

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see no alternative either. I was willing to sign anything, anything at all, I said. I would take responsibility myself, of course. She said there was no question of that, giving me a ‘lethal injection’. I told her how illogical that was. After all, under any other circumstances I’m allowed to make up my own mind – for example, whether I want medication, a blood transfusion and so on; and at the time I could have refused the operation. I think I also said the medical profession let people down when it came to the crunch. She admitted that it might be illogical. ‘But we can’t. It’s not legal.’ She added that she and the other doctors would do whatever they could to help me. Actually, they have all but eliminated my pain. You probably can’t quite imagine it, but it’s miraculous when I compare it with the way I was. I’m pleased my request was not granted. I am not well, I  do know that. My situation is certainly not without its dangers, but I take one day at a time and no longer think about leaving the land of the living. In a country with a law on active euthanasia, Robert would undoubtedly meet the criteria for being granted active euthanasia. In that country you might find the draft, among the papers left behind, of a letter headed merely: ‘Dear Friends, …’. --------------------------Some school pupils emailed me: Hello! Our project assignment this week is about active/passive euthanasia, and we would like to know your opinion about active and passive euthanasia, for instance:

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Which is ethically more correct:  To let a person suffer and refuse to help them to die because you believe that suffering is part of life – or, conversely, to help that person eliminate the suffering and end their life in accordance with their wishes? Why do you think passive euthanasia is legal and active euthanasia is illegal? Do you think it’s OK not to grant a person their wish to die? Animals are put down if they are suffering what we assume to be unbearable suffering  – so how come humans don’t have the same right? Do we remove patients’ self-determination by not giving them the right to choose their own death? Why do you think most doctors and politicians are against euthanasia when the majority of the population are in favour? (State your reasons) When the suffering becomes unbearable for a patient, is it not our duty to relieve that individual of their suffering? Two other pupils were more succinct, asking, ‘Is it murder or mercy to perform active euthanasia?’ and adding, ‘We don’t need to hand this in until Friday, but please feel free to reply by Wednesday at the latest,’ showing me that the pupils have a straightforward and somewhat crude expectation that even complex ethical issues can be addressed and handled with rapidity. I think the array of questions also shows that the pupils’ view on the face of it is that euthanasia must be the right thing: to allow patients, rightly, to be able to have their life ended if they are experiencing great suffering, if their condition is hopeless and if it is their own wish.

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Many people are preoccupied with the subject, and that applies to young people too. I have often been contacted by school pupils of all levels and by trainee journalists, asking me questions about euthanasia when they are writing an assignment; or by journalists following up a case in the media and just wanting to ask me whether introducing euthanasia would not be the right thing to do. In their assignment or article, they intend to describe the status quo and find out when a law on assisted dying might be passed, and why I  think it hasn’t happened yet. The reasoning behind introducing such a law appears straightforward: Suffering must be relieved, and the patient’s own will must be respected, because the individual must be the most obvious person to determine whether life is worth living. Some hasten to say that they themselves are supporters of a law on assisted dying; or they say they are certainly inclined to advocate it but would like to hear from anyone who opposes it first. I explain my opposition, but am often met with disbelief to start with: ‘So, do you think people should suffer? Should we not be allowed to control both our life and our death ourselves?’ I reply that I don’t advocate suffering, and I do advocate respect for the right of self-determination and free will. Saying that should be superfluous, since most people agree with both, as it is generally taken entirely for granted as the starting point for such a discussion. But I go on to say that such a law may spell misfortune for patients and doctors, and for the doctor– patient relationship; and maybe for our culture too. And after the conversation the questioners sometimes say the whole thing was probably not as simple as they first thought.

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Something has then been achieved; their absolute certainty has been given a slight nudge, a little doubt has been sown. That’s why I always go out of my way to reply to school pupils and journalists. Yet at times it is like punching a feather pillow – a transient indentation is made, but the whole soft mass will re-form and level out again. Not long after, someone else follows, again articulating the thought that euthanasia has to be the humane answer to suffering. On the face of it, the thought appears to be so obvious as to seem to brook no contradiction. But when something seems so right that no one even spots there might be any objection to it, there may be good reason to examine it more closely. And if you do that, you cannot help but discover that it is more complicated than meets the eye. In the euthanasia issue, you need to check the tenability of the assertion that making it legal to relieve people of their life will alleviate more suffering than it causes. Even if the field is carefully regulated, one of the first things to arise will be doubt as to whether it will ever be possible to draft a law so robust that it affords protection for the most vulnerable. As the general practitioner Iona Heath wrote in 2012:  Most of the discussion of and support for assisted dying revolves around exceptional individuals who are intelligent, articulate, and facing the prospect of suffering and who clearly understand their situation and predicament. Not infrequently, the debate about legalizing active euthanasia is conducted by people who are good at articulating their reluctance to end up in situations of unbearable suffering and helplessness. Yet legislation has to protect everyone

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including those who struggle to express or even fully understand what is happening to them. Anyone who dismisses a dilemma or has failed to grasp it can settle a matter with the no-nonsense phrase:  ‘Opinion cannot be split on that’, whereas someone else would say that that is precisely the case. The word dilemma originally means ‘two opinions’, and on this issue we are dealing with a genuine dilemma. The proviso is to want what is good – it is not a dilemma per se, because it is the starting point. In ethical matters the dilemma always consists of working out how to achieve the good. --------------------------A word here on the terminology used in the current debate about endof-life. I return to this issue and the use of euphemisms in Chapter 10. In his book Euthanasia (in the ‘All That Matters’ series from Hodder & Stoughton), Richard Huxtable, professor of Medical Ethics & Law at the University of Bristol, also grapples with terms and definitions (Huxtable 2013). He states that ‘euthanasia’ should be used for the intentional ending of a life of suffering. He mentions that a distinction might be drawn between ‘active’ and ‘passive’ euthanasia: ‘Giving a lethal injection would count as “active”, while some would say that denying (or removing) life-supporting treatment amounts to “passive” euthanasia.’ Euthanasia is divided into ‘voluntary’ (the person agrees to it), ‘involuntary’ (the person opposes the act) and ‘non-voluntary’, when the person lacks the ability to agree or object (a baby or a demented patient, say) – a matter of competence. ‘Assisted dying’ conveys a concept of voluntary euthanasia where the assistant is a medical doctor, whereas ‘mercy killing’ (or

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‘compassionate killing’) suggests that the performer of the deed is any person, for example, a loved one. ‘Assisted suicide’ denotes that the final act is performed by the suffering individual being assisted by another person. If that person is a doctor, the term could be ‘physician-assisted suicide’. It is regularly stated that physician-assisted suicide is ethically more acceptable than euthanasia in as much as the end-of-life medication is self-administered by the patient. Thus, it does not require the physician to actively kill the patient. The doctor prescribes the medication, but it is not his or her final responsibility that it is taken. It is like handing a loaded gun to a suicidal person – it is for this person to pull the trigger – a final expression of autonomy (compare the device constructed by the Australian general practitioner Philip Nitschke, p. 26). The contention is also that this somehow exonerates the doctor. The Oregon Death with Dignity Act from 1997 that legalized physician-assisted suicide has been described as a more attractive and safer alternative to euthanasia, first and foremost because it gives the impression that the dying is a result of the patient’s own free will. It is, however, the physician who decides whether the patient’s request for assisted suicide can be granted, and as will appear in the following chapters the pressure on a suffering patient may still exist. Dutch jurisdiction from the first days when euthanasia was debated in the 1980s has looked upon euthanasia and assisted dying as two aspects of the same matter, or two sides of the same coin, and the Dutch Termination of life on request and assisted suicide Act (2002) regulates assisted suicide in the same way as euthanasia (Nys 2017). Likewise, the World Medical Association (WMA) deems both euthanasia and assisted suicide as unethical (cf. p. 116).

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Oregon’s Death with Dignity Act only covers the time until the lethal medication is prescribed; thus, there are no measures to secure that the patient in fact takes the remedy consciously or voluntarily. This involves some risk (Hendin and Kamisar 2009). In the majority of cases there is no information about how much time has elapsed until the death took place. Reported complications (seizures, difficulties with ingestion, regurgitation, regaining consciousness) are few, as no data exists in 105 out of 168 cases (Oregon Public Health Division 2019). This means that the process of death cannot be evaluated; hence it is difficult to determine whether the death was dignified as the name of the law implies. It is also increasingly realized that a self-administered oral drug can be ineffective in bringing about a rapid and easy death. Therefore, a change to the law has been proposed so that patients that request assisted suicide should be given the possibility of receiving a lethal injection (House Bill 2217 2017). This underscores that it may be difficult for society to fight a development towards active euthanasia once a line has been crossed by having legalized assisted suicide. I shall mainly use the words euthanasia and assisted dying in this book with the implicit idea that it is voluntary, but I shall dwell on the question of whether the distinction between ‘voluntary’, ‘involuntary’ and ‘non-voluntary’ can always be made with precision. Translating the Danish terms used in the debates about ending life brings about other problems. Active death-help (literal translation of the Danish aktiv dødshjælp, equivalent to the German aktive Sterbehilfe) is the term most commonly used in Denmark for active euthanasia. But it is in itself an imprecise expression, and what it really signifies has turned out to be unclear to many people. The actual word

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‘death-help’ does not make it clear that it actually does involve a form of help that consists of taking a person’s life, and hence not help given to a person during the course of death. So, then, does the word ‘deathhelp’ mean to help to die or to help with dying? Or in other words, is it death as a form of care or is it care for the dying? Furthermore, the adjective active seems redundant: the action – euthanasia – is always active in this connection. ‘Passive death-help’ (Danish:  passiv dødshjælp) might be used in the same way as the term ‘passive euthanasia’, but again people tend to mix up the terms. Therefore, it would instead be more descriptive and precise to talk about ending futile medical treatment (treatment cessation) or not starting treatment at all or using palliative treatment of symptoms with, for example, effective analgesics.

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2 Death as option or destiny

As the Danish theologian Rudolph Arendt (1992) succinctly put it, ‘We can determine the time of our death by curtailing life at our discretion, but we cannot determine the time of our death by prolonging life at our discretion. However you look at it, death is and remains a destiny and as such places a limit on our self-determination.’ Still, for the modern human it is a prevailing conviction that life and death lie in their own hands. This belief is being conveyed to us in Western democratic societies as we are brought up. There was a teacher who took her pupils across to the cemetery at sunrise. She wanted them to look at the gravestones and read the dates. There is a year of birth and a year of death. In between there is often a dash. The teacher wanted to remind them that the small dash is what life is all about. It represents an entire lifetime of opportunities and choices and options. Birth is a destiny, death is a destiny, but that thing in the middle is not just a destiny, it is also an option (an add-on). Destiny encompasses events and life conditions to which we are subject and which lie outside our power. Opt-ins and opt-outs, on the other hand,

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apply to all those situations that lie within our sphere of power; where we have the possibility of choosing; where ‘we are the architects of our own fortune’, as the saying goes. Nowadays you might say that ‘you project-manage your own life’ or ‘you have a project for life’. It was an educationally minded teacher who wanted to bring up her pupils to become informed, enlightened, responsible and democratic citizens. That is good, but it is also the appealing message of the present age, the right message: I choose, I determine. Life is my own. No one must mess with my free choices and my freedom. The paradox is that, in our age of self-determination, where all the decisions seem to have been left to the individual, where everything has been placed in the hands of the individual, the individual themselves can be let down. How can giving over complete decision-making power to the individual be a failure? Well, it can happen, when amid the respect for the right to self-determination and free will it is forgotten that we have all been placed in a larger context; that we do not live independently of others but in a community, ignoring vulnerability and frailty as a basic human condition. In asserting respect for our right to self-determination, we are left to our own determination – left to our own devices. It may be the beleaguered person with waning strength and flagging spirits. Referring to a person having their right to self-determination can accentuate their aloneness, and it can bring dissociation and coldness into their relations with others. Failure and abandonment can grow ever greater by attempting to turn what is otherwise destiny into an opt-in. Gaining power and control over the whole thing, birth and death – in addition to the life in between – can turn into a task that is scarcely deliverable.

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The idea that we are born into dependency of fellow human beings and that we are vulnerable was articulated nicely by the Norwegian authors Jan-Olav Henriksen and Arne Johan Vetlesen in 2016:  From the very outset the new-born human child depends on there being others present – someone to provide nourishment, warmth and security. That dependence on others is rooted in the individual’s vulnerability. Vulnerability establishes bonds with others. Without bonds to someone outside of itself, the human being cannot cope, for the human being is not a self-sufficient being, and the lack of self-sufficiency applies not just at birth; rather, it is a characteristic feature of the species which lasts for life. People differ from animals by being conscious of time and the fact that they are going to die. We know that we live for a certain time and in a particular time. We know that death is certain, but for most people the knowledge is of no relevance – right now. It is knowledge that we ‘suspend’. The knowledge of death is ‘suspended knowledge’, said the Danish theologian and philosopher K. E. Løgstrup, explaining that at the same time it is a condition for having the courage to live and being able to make plans. It is generally pointless thinking endlessly about death or about when it will occur, as death is outside our scope for manoeuvre anyway. It is destiny. It is outside our power. It is. Euthanasia is not. Euthanasia is apparently within our sphere of power. Given that we are powerless in the face of death, we can at least determine when it is going to occur. However, it does give an impression of power in the midst of our powerlessness, for resigning oneself to powerlessness is

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difficult for the modern human, who enjoys a sense of being able to control life and death. It may look as if euthanasia is an acceptance of death, but if anything, perhaps, it is a desire to control it. Whereas death is destiny, it could be that the ideas about assisted suicide and euthanasia suppress death by wanting to make it into an option. We can argue the pros and cons of a choice, and of when and how we are to make that choice. We cannot do anything about our destiny; in fact we barely talk about it or discuss it. So, the English midwife Jennifer Worth has a point when she says in her book In the Midst of Life from 2010:  ‘It is surprising how many people are quite unable to talk about death, yet are happy to talk about euthanasia, and they do so with the assured confidence of one who knows all the answers’ (Worth 2010). We are happy to talk about euthanasia and discuss its justification as well as any conditions and rules governing it, but we do not speak of death, because we cannot discuss the justification for it, and it does not play by our rules. We prefer, in other words, to talk about what we think we can subdue, and where we have scope for action, rather than about our powerlessness. Among other things, the recurrent opinion polls and questionnaire surveys on the subject offer scope for speaking and saying something about euthanasia. And many have now been done.

Opinion polls on euthanasia Do you think that, under certain circumstances, it should be allowed to offer euthanasia to severely ill patients with unbearable

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suffering who have no prospect of a cure, and when the severely ill patient voluntarily and advisedly requests it? (From an opinion poll) The Western world is debating whether assisted suicide and euthanasia should be legalized, that is, whether it should be possible, without risking legal proceedings and punishment, to do away with the life of a fellow human being (a patient) where certain conditions have been met. The debate advances in waves that come and go. Not uncommonly a wave starts against the backdrop of a one-off incident mentioned in the media, where anyone can see great suffering and futility. It is described in shocking detail and painted with little nuancing. Then come the proposals to legalize assisted dying by way of a response to what is called the problem of suffering. Random people off the street are interviewed, and hastily set-up opinion polls are conducted. They generally show a majority in favour of legalization, and demands are made that the politicians now have to listen to the voice of the people. In the aftermath, odd sceptics are heard; but those waves subside too, and once again there is silence on the subject for a while. Why do the decision-makers vacillate now that the media show so clearly what people want, and now that the arguments in favour of legalization are so obvious? I will repeat them: unbearable suffering must be avoided, and the right to self-determination respected. So why not pass such a law, which naturally has to be worded with care and clear rules. However, a crucial point is how clear such rules can be made. A process of death has grey zones and cannot be made any the more black or white by being constrained within a set of rules

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designed to entitle a person to accomplish it. This is expanded upon in Chapter 5, p. 59. One of the sources of error with such opinion polls is that the question is generally put to healthy people, as the majority of the population at large are. They are neither severely ill nor dying nor in dire need of help. They perceive themselves as independent, and most of them get by on their own. They are familiar with severe and fatal disease from relatives, from hospital visits, from reports or from the media and think they know what it is like to be severely ill themselves. They base their stance on their conception of severe illness. The voice of the dying themselves is rarely heard. People speak of the process of dying without really being in the situation. A professor of geriatrics, Diane Meier, in 2015 expressed this thought in the following way: ‘The movement to legalize assisted suicide is driven by the “worried well”, by people who are terrified of the unknown and want to take back control.’ In the book Night Approaching, the Swedish author Carl-Henning Wijkmark (2007) attributes the following observation to his main character: ‘It may seem an odd paradox, but the weaker I became, the less I wanted to die. (I hope that supporters of euthanasia are aware of this phenomenon, which I suspect is a common one.)’ During a debate meeting on euthanasia, one of the speakers, who was an adherent of legalizing euthanasia, carried out a small straw poll. He asked how many members of the audience would rather live for a shorter time with a painful and assuredly fatal disease than live with it for a long time. Many people put their hands up: under those circumstances they would rather live for a shorter time.

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When that is the option presented, it is hard to choose differently. That would also be my choice. But the speaker used the little interaction with the audience to conclude that, even among the audience, there was also a majority in favour of legalizing euthanasia or assisted suicide. In polls the question of euthanasia is formulated according to its being ‘well intentioned’, and I  have yet to see a poll that has been worded in value-neutral terms. Fairly consistently, too, the polls lead to more than half and often more than three-quarters of respondents saying yes to euthanasia; 70–80 per cent is not infrequent. I have no doubt that what many people are really answering is, if they were to choose, they do not think that they themselves or other people should suffer, so it is not so strange that the percentage is high. Looking at it more closely, then, it is clear that the question is a leading one. It simply contains the two main arguments I  have discussed, for euthanasia:  to avoid unbearable suffering and to respect the right to self-determination. Added to this, the actual word euthanasia is a positive word. It is Greek and originally means ‘good death’. Likewise, the terms ‘assisted dying’ and ‘assisted suicide’ include the concept of help. Unbearable suffering cannot be borne hence it is unbearable. When there is no chance of the patient recovering, there is nothing more to be done. And the words voluntarily and advisedly point precisely towards good concepts like self-determination and free will. The fact that something is voluntary is good a priori. No coercion here, it’s an offer. It’s freedom. Advisedly is also good. Not a rash decision, but a thorough and painstaking decision-making process, carried out by a qualified, choice-making person.

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Tweaking the wording of the question just slightly would presumably give different response rates. It might read:  ‘Do you think that, under certain circumstances, it should be allowed to kill severely ill patients?’ Therefore, I have substituted the word ‘kill’ for the expression ‘euthanasia’, and only that very formulation will make clear what it is actually wished to have legalized. Some may even answer: ‘No, not kill … but euthanize!’ because it is not certain that respondents know what active euthanasia is. No, what is certain is that many do not even know that. An acquaintance told me he was a supporter of euthanasia, because when his father lay at death’s door, the doctors stopped treating him, giving his father peace, and that was good. I explained to him that it is both in keeping with good medical practice and legal to discontinue a treatment that can no longer help a dying patient, and that it is therefore not euthanasia. ‘Euthanasia is killing the patient,’ I  said. ‘Well, yes … but no, I wouldn’t advocate that!’ he then said. I hope this book illustrates that, ethically, euthanasia is a complex question, and that any decision to legalize it will therefore not lend itself to being settled by referendum either. But this is no longer inconceivable. New Zealand actually held a referendum on assisted dying in conjunction with the general election in October 2020 (Jha 2020; Snelling and Geddis 2020). As in other countries, the movement for legalization had started from an isolated case where everybody could see the distress and tragedy (Jha 2020). The result of the referendum was that some 65 per cent supported the ‘End of Life Choice’ bill while 34 per cent opposed it. The referendum was binding, and the law is expected to come into effect in November 2021 (Snelling and Geddis 2020).

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Recent history, for example, in the UK, might have warned against referenda on complex questions. It is impossible to answer deeply complicated questions with a yes or no. Politicians may decide what question is to be asked, but they do not decide the answer. The result will be more or less random, and it is almost unfair to a population to ask a question where one answer will have consequences that nobody will be able to foresee. The result in New Zealand was fundamentally predictable. It directly paralleled the opinion polls mentioned above where it seems so counter-intuitive to disagree with the premise that suffering must be avoided, and that the right to self-determination must be respected. The attire may be democratic, but referenda divide people; they do not unite people, and they tend to over-simplify complicated issues. The Italian man of letters Umberto Eco was critical of the mechanism of simplification already in 1998 when he said, Certain ethical problems became clearer to me on considering some problems in semantics  – and please don’t worry if some people say that we are talking in a complicated way; they might have been encouraged to think too simply by mass-media ‘revelations,’ predictable by definition. Let them instead learn to ‘think complicated,’ because neither the mystery nor the evidence is simple. --------------------------How is the patient going to be killed if euthanasia does proceed? Most people imagine it would have to be done by administering a poison. Here is an older example, described in the medical journal

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The Lancet. On 22 September 1996 a former carpenter, Bob Dent, from Darwin in Australia, died, aged 66. He was the first patient to receive euthanasia, under the law that applied briefly in the state of the Northern Territory. It was passed on 1 July 1996 and repealed again barely a year later in April 1997 by the federal government (Collins and Brennan 1997; Kissane, Street and Nitschke 1998). Bob Dent had cancer. On the appointed day, he was hooked up to an intravenous drip set, designed by his GP, Philip Nitschke. The doctor had devised a delivery control system with a computer:  five images are displayed consecutively on a screen. For each image the patient has to press the space bar to answer in the affirmative in order to continue. On the first screen the connection setup is explained. The next screen explains the medication, which is two sedatives and finally the poison, which paralyzes the respiration. On the third screen the computer asks, ‘Do you realize that if you press Yes you will be given a lethal injection?’ On the fourth screen, ‘Are you fully aware that if you press Yes at the next screen you will die?’ And on the fifth screen, ‘In 15 seconds you will be given a lethal injection’ (Alcorn 1996). After Bob Dent’s death Philip Nitschke said, ‘It (voluntary euthanasia) takes a toll out of those people who are participating, but perhaps, ultimately, it is the greatest thing you can do for a person. … I did not feel in any way that I had done the wrong thing.’ That it is ultimate is true.

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3 Active or passive euthanasia

I have met people who fail to understand that I can be an opponent of active euthanasia and assisted suicide. Once they have heard me say it, however, they want me to elaborate on my way of thinking. Every so often I have asked them to tell me what euthanasia is and, as mentioned, it turns out that many people mix it up with so-called passive euthanasia, that is, discontinuation of a treatment. Journalists regularly mix the terms up as well. Examples of discontinuing life-sustaining treatment have been referenced from abroad (the United States, the UK, Italy). There have been long, drawn-out proceedings and lengthy debate, and the final decision to discontinue treatment has been made by a court, in some cases after a bitter family row, perhaps after appeals and sometimes with the involvement of religious authorities. These proceedings come as a surprise in Denmark, but I have often seen the journalist accompany his or her reporting with a comment to the effect that, after all, we in Denmark have not legalized active euthanasia either, even though that is not the crux of the matter.

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A friend tells me: My brother had had prostate cancer for three years. It was an aggressive form, and it had spread to the bones in both pelvis and back. In February 2003 he died. I got a letter from him in January. He was a skilled painter, and he had previously done a watercolour of an old fishing cutter that had been hauled ashore. He sent me the picture and wrote: ‘Dear … I found the fishing cutter on the island of Bornholm one lovely summer’s morning. It was a summer when I felt a bit like painting, so I painted a small watercolour. However, the picture ended up in the drawer permanently. For one thing there’s so much other stuff hanging on our walls, and for another it couldn’t compete with larger pictures needing to be hung, but this autumn and Christmas the little picture has begun to intrude on my consciousness somewhat, because it actually expresses my situation and frame of mind really well. So now it’s coming out of the drawer and is going to be my (slightly belated) New Year’s greeting to all of you who so faithfully keep abreast of how we are. The old tub has been hauled well away from the surf, clearly put out to graze. There are holes in the hull and deck, and the floorboards are rotten. The paint is peeling off, but the colours are still discernible, and please note that the sun is shining, despite everything. There can surely be no doubt that the old girl has never been ocean-going. She’s done a bit of coastal fishing, mostly in fair weather.

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There is an obvious suspicion that the craft has functioned as a pleasure boat to an equally great extent. I know. The image of life as a sailing trip is a well-worn cliché, but nevertheless I feel like I’m a kindred spirit with the little old crock now. Happy New Year and fondest greetings ….’ The final period was tough going; great pain, fear and worry, excruciating nightmares, which precluded him from merciful sleep. He was an introverted person, but during those years of sickness he had nevertheless become more open with regard to sharing his thoughts about his illness with us, and that made it easier for us all. He was given palliative care and had been hospitalized in order to have a spinal block. It was given one Thursday, and I visited him in the evening. He was in good spirits, the staff were caring, and he had agreed with them that pain relief was to be given high priority. By Friday things were really bad. The block had only had an effect for a few hours and owing to some – presumably – crumbling vertebrae it could not be reimplanted. He had been moved to a private room and given intravenous fluid. I had come to be with him for a few hours. He looked at me with such a sad gaze, which I will never forget. It was the last real contact I had with him. He wanted to live, but he was not up to it. My expectation was that he would be kept free of pain and dosed with morphine as and when he needed it. On the Saturday we were all convened to the hospital: ‘If you want to be there, now is the time,’ was the message. Then I saw that he was dying, without consciousness. The nurse came in regularly to see to him, and whenever he seemed racked with pain, she would adjust the drip. I  realized that one

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last round of effective pain therapy could precipitate death but was nevertheless taken aback when his breathing stopped. He sighed a couple of times and was dead. --------------------------One of the stereotypes in the debate about euthanasia is that, according to the law, it is not something we have in Denmark, and yet we do have it, on the quiet. As a doctor I  have not rarely been confronted with this view: ‘You’re already doing it covertly after all’ – adding, slightly obligingly, ‘but I’m quite alright with that too when there’s nothing more to be done. There’s no point prolonging it.’ And it is occasionally followed by ‘But since you’re doing it anyway, might it not just as well be legal, to make it all open and above board?’ The view is monotonous and based not infrequently on a person’s own experiences, as outlined above, or on what others have reported: ‘But then more medicine was given, and then so-and-so died, and it was the right thing too, because …’ Here the doctrine (or principle) of double effect seems to be in play. It says that if doing something morally good has a morally bad side effect, it is acceptable to do it provided the bad side effect was not intended. Obviously, the chronological succession of medication given to a dying person and the subsequent onset of death is very easily perceived as a causal consequence of the medication. In the grey zone that forms the transition from life to death, causal links are sought. There is a quest for a kind of meaning or explanation of the fact that death is occurring now. But it can be difficult to distinguish between

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what is causal and what happens by coincidence, as the Czech-born Dublin doctor, Petr Skrabanek, once put in his elegant sentence: ‘It takes only a slip of the mind’s typewriter to turn “casual” into “causal”.’ I sense that the myth of surreptitious euthanasia  – for it is a myth now  – is almost indestructible. In a poll done a few years ago a number of doctors were asked whether they had experienced a patient dying within a period of time after administering a pharmacologically active substance. The interpretation of the poll was tendentious:  If treatment had been initiated by injecting an analgesic every four hours in a terminal state and the patient had died in the interval between two planned visits, it was construed such that the doctor had given the final injection, after which the patient had died. For example, an injection was given at 4.00 pm and the next visit was scheduled for 8.00 pm. The patient had then died at 6.00 pm, and the four o’clock injection had thus as a matter of course been the last. The hospice doctors Rob George and Claud Regnard (2007) address the doctrine of double effect by quoting several oft-seen statements. One of them is as follows: ‘We know that morphine kills because a patient often dies after a morphine injection.’ And they explain:  Dying patients die and they often receive morphine for pain. That an injection coincides with death says nothing about a causal relationship, although it may feel like it. However, when reason and emotion are in conflict, emotion usually wins and an emotional link between morphine injection and death is common.

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This completes the circle: clinicians believe that morphine kills and ‘experience proves’ that those on morphine die. A few years later, a group of specialists in palliative care – including George and Regnard – sent a letter to the British Medical Journal, ‘So, farewell then, doctrine of double effect’ (Regnard et al. 2011). It must be acknowledged that the so-called pain drip, or morphine drip, has actually been used this way in Denmark, that the analgesic medicine administered into the vein was gradually increased (sometimes doubled) at regular intervals. Some thirty years ago one of the instructions on the pain drip read something like this: ‘Increase dose until there is respiratory depression’ (sic!). But respiratory depression is not a point of pain relief unless the aim is precisely something different: euthanasia. Nowadays the intravenous pain drip is very rarely used in our country. Here we have benefited from the knowledge afforded us by hospices and palliative units. The so-called Robdrup Case of 1994–5 was an epoch-making one in Denmark. The patient was an elderly man, and his family (spouse and son) complained that the pain relief dosage for him at a hospital ward in Copenhagen had been increased automatically until death occurred. They reported their understanding of matters, that their relative had gradually been killed. At one point a police inquiry was considered, but it was dropped, and the case ended with the Patients’ Board of Complaints and the Health and Medicines Authority issuing the ward in question with a reprimand. Among other things, the indication for increasing the medicine had not been entered in the record, or it was mentioned very briefly and nondescriptly. Several times it just said the dose had been increased

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at … o’clock. Following this case, in a guideline on pain therapy for the dying, the Danish Health and Medicines Authority stressed that pain relief may only be given on the indication of ‘pain’. The dose of medication, in other words, must be ‘pain driven’. This has been understood and incorporated in the procedures at wards around the country, and today intravenous morphine drips are a rarity; and administered in the way described, with automatic dosage increases, they practically do not occur. But apart from the perceived causality between medical treatment and the onset of death, the words in themselves seduce. As mentioned in Chapter 1, there is a clear distinction between ‘active’ and ‘passive’ euthanasia. Linguistically, however, the concept of passive euthanasia is very reminiscent of active euthanasia and focusing on the word euthanasia makes one think that it is more or less the same in the active and passive forms, respectively, namely having the purpose of the patient dying. In one instance by way of adopting a passive stance, in the other by means of an active deed. It is not so surprising, therefore, that participants in questionnaire surveys cannot make the distinction, but it assumes the additional consequence of being made to think that the difference between one and the other is also genuinely insignificant – almost a dispute over words – so that active euthanasia might just as well be legalized. Passive euthanasia is entirely in line with the Danish Health Act. It is possible and legal to cease (or omit) treatment that no longer benefits the patient. Moreover, the doctor has a duty to alleviate, for example, by administering whatever analgesics or sedatives are necessary. The Act expressly permits symptom alleviation (palliation) to be given to a dying patient, even if it is life-shortening. However,

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as an important point, it must be added that palliative treatment with effective analgesics is not necessarily life-shortening. Sometimes it is the converse: The patient is brought out of pain-induced shock, for instance, when there is an increased amount of adrenaline in the blood, which can produce life-threatening cardiac arrhythmias. In some instances, effective alleviation can be life-giving and life-preserving. But palliation or treatment with anxiety-relieving drugs (anxiolytics) can be life-shortening, and if that happens, then it is in accordance with the Danish Act, which says outright: ‘A terminally ill, dying patient can be given whatever analgesic, sedative and similar drugs are necessary in order to alleviate the patient’s condition, even though this may result in precipitating the time of death.’ You might put it this way: in the case of a debilitated and dying patient the ‘thread of life is so thin as to break easily’. Palliative treatment with effective analgesics can – but does not always – cause that ‘thread’ to ‘break’. The patient may be so debilitated as to barely be able to ‘tolerate’ relief, but that does not mean that relief should not be given; it should and must. The spirit of the law is that one must not be so afraid of death as not to dare provide relief, because the alleviation of suffering is a basic medical and nursing duty. As mentioned earlier, active euthanasia should be called euthanasia, it’s as simple as that, as the neutral and also internationally used designation; and passive euthanasia should be replaced by terms like ‘cessation of futile treatment’ and ‘palliation’. It is good to get rid of words like the Danish dødshjælp (death-help) because it is misleading. It is also good to dispose of the word passive, because discontinuing treatment is not a passive decision, and because effective palliative treatment can be anything other than passive. Palliative treatment

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or palliation is an active help in those cases where one cannot cure but can alleviate. It is not just the cessation of treatment. It is care when help is needed, not to die but with dying. In my eyes the most adequate pair of terms for active euthanasia and passive euthanasia would therefore be euthanasia and treatment cessation or palliation.

Acting and omitting to act The Swedish author P. C. Jersild (1995) recounts the following story from the Netherlands: There was a young woman under 30. She had an inoperable cancer of the tongue that could no longer be irradiated. It had grown to the point that she was no longer able to eat, but she had a hole in the stomach through which she was fed nourishment. The cancer grew and started to obstruct the air supply, so that a tube had to be inserted in order to also manage the supply of air for the short time she still had left to live. This patient was unable to speak but wrote on a piece of paper: ‘I don’t want this last operation, because I  know I’m going to die from a lack of air anyway, and in that case, I’d rather be allowed to die.’ And allowed she was; she was euthanized. --------------------------Advocates of legalizing euthanasia will refer to the fact that, ethically speaking, euthanasia and omitting to give life-maintaining treatment can amount to the same thing if the result is the same, that the patient dies. They question whether it is even possible, ethically, to

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distinguish between active and passive euthanasia, that is, treatment cessation and the use of, for example, analgesics and tranquilizers. Below I reproduce some oft-heard chains of argument. Not infrequently, the prelude is some dreadful and also formidable tale of illness, like the one related by Jersild, for example. This woman undergoes severe suffering, and it is then asked why she could not have been spared this earlier on. Treatment is no longer possible, and at one point it is clear that the only really good thing that can happen to her is that she be allowed to die. Under such circumstances death cannot be viewed as the evil that must be avoided. It is the good which one can only wish for, but then one finds oneself up against a wall, legislation that says it is forbidden. Why must it be forbidden? How can it be wrong to choose the good, which is the overriding principle governing ethical action? One might add the statement that the patient will be lucky to live in the Netherlands, while in other countries she will be mercilessly left to see it through to the bitter end. In short, it is said to be inconsistent that, despite everyone seeming to agree that treatment cessation and effective palliation are not only legal even if it shortens life but also ethically defensible, there are still those who oppose euthanasia. If the overriding ethical principle is to choose the good, and for the patient in agony the good is therefore to die, why allow only the one, not the other? Furthermore, the argument goes: envisage two patients here, both of whom are severely ill and in a state of agony. Considered from any angle, their suffering is unnecessary. It is pointless death playing the long game. One of them succumbs to pneumonia. The patient rejects treatment with penicillin – that is the patient’s right, even if the

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treatment might be a life-saver. The doctors abstain from treatment, therefore, and the patient dies shortly afterwards. The other is less fortunate, so to speak, but he asks the doctor for help to die, that is, euthanasia, only in this case it is not legal. But would it be more wrong than the first case? The two patients have the same justified wish to die, and the doctors’ intention – that death must be allowed to occur – just like the consequence – that death does actually occur – will be the same. Just as respect for the patient’s self-determination and the assessment of his quality of life make abstaining from treatment acceptable in one case where pneumonia sets in, so too it would make euthanasia acceptable in the other. Or in other words, if there are good arguments in favour of permitting no treatment, there are equally good arguments in favour of permitting euthanasia as well. There seems to be nothing amiss with the logic in these arguments and deliberations. But perhaps it is a kind of logic that can be neither contradicted nor accepted. For even though the outcome – death – from treatment cessation and active euthanasia is identical, and the desire for good may be said to be the ethically relevant thing, there are some clear differences. There is a difference between taking life (euthanasia) and allowing life to ebb away as treatment is discontinued and symptoms are alleviated (palliation). As the renowned British physician and professor in palliative care Robert Twycross wrote already in 1995, ‘When viewed from the academic (or editorial) ivory tower the arguments in favour of legalised euthanasia may very well seem logical and powerful. At the bedside, however, the arguments against are overwhelming.’ Thus, logic dictates that if the good for a severely ill and suffering patient

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is for death to occur, it is not crucial whether death is brought about by our active action  – killing  – or by our not working to counter death, for example, by refraining from providing penicillin therapy or treatment for cardiac arrest. In the case of euthanasia, the doctor is the powerful executor of the killing action. The time is agreed with the patient, possibly following conversations with any relatives as well, and the doctor performs the action. The doctor has the final say. In the second case, life can no longer be sustained. The patient and the doctor may possibly have fought a joint battle to keep death at bay but must mutually acknowledge that it is impossible. At some unknown point in time, death has the last word, as is one of the conditions of life. The dialogue that has to be had with the patient in the two different situations will be coloured by whether the doctor has to seize power and kill, or the doctor has to acknowledge his powerlessness and allow someone to die. However, the logic that the outcome is the same  – death  – after treatment is discontinued or in the event of euthanasia does not hold water at all in cases where the patient is not terminal. In recent years euthanasia has also been used vis-à-vis non-dying patients, for example, a patient with depression or a patient with world-weariness (Boer 2014; Jones 2017; Nys 2017). ---------------------------

Man’s power over life and death Underlying everything is the notion of mankind’s power and the idea that it is somehow limitless. It is unlimited in the sense that mankind

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is able to engineer death, whether it be done by taking life or by not obstructing the course of nature, over which we implicitly have power too. In a way it reflects our age’s denial that there is a world with its own independent and causal dynamics outside of mankind’s sphere of power. Or, to put it more directly, it is a denial that there are diseases and illnesses which we cannot cure, and that death cannot be averted because it is beyond our control. Euthanasia and cessation of treatment are so totally and utterly different, as can clearly be seen from the way an injection of lethal poison will kill both a sick and a healthy person, whereas refraining from treatment or providing palliative and soothing, sedating medicine at normal dosage will not have a lethal effect on a healthy subject or on a patient who is not dying. To administer lethal medicine (poison) with the resultant death of the patient is to cause the patient’s death, but to switch off a respirator or refrain from giving medicine is to remove an obstacle to the patient dying of his or her illness. The crucial difference, then, is that the former is to choose a path that causes death, and the latter is to choose a path that does not avert death. And choosing a path that does not avert death will be the obvious and correct thing to do if that person’s condition is hopeless. No one in their right mind is going to initiate a resuscitation attempt with cardiac massage in a patient who has suffered a cardiac arrest but is dying of a fatal disease. And no one wishes to deliberately prolong a pointless or agonizing condition. Although we know that treatment cessation and palliation can bring about or hasten the patient’s death it will not be looked upon as failure of our treatment if, despite our expectation, the patient survives. One might put the contrafactual question:  If the patient

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had not died or death had not been hastened, would the treatment then have been a failure? With euthanasia the answer is ‘yes’, with treatment cessation or palliation the answer is ‘no’, since the patient’s death was not the purpose of the treatment, but rather the stopping of a treatment that no longer benefited the patient. A court case from the United States can also illustrate the difference. A patient, the victim of a criminal attacker, was put on life-support systems. When it became apparent there could be no recovery, the support was removed. The attacker was then charged with murder. His attorney claimed that the death was caused not by his client’s action but rather by the removal of the life-support systems. The court did not agree. The victim had sustained severe traumas during the attack, and it was these that had led to his death (Graves 1989).

The bathtub example I devote special attention to the following, because the so-called ‘bathtub example’ has been prominent as a special – almost critical – argument in the debate. Most doctors will scarcely be in any doubt that the difference between bringing about death at a fixed time and refraining from futile treatment, when the patient subsequently dies at an unknown time, is crucial and quite simple to assimilate. It has been claimed that the difference between action and omission to act constitutes the crucial difference between euthanasia and cessation of treatment. The rationale behind this differentiation is the ethical principle called the acts/omission doctrine. The doctrine states

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that there is a difference between whether an event is a consequence of an action or a consequence of an omission. It appears to be worse to carry out an action that has foreseen negative consequences than to omit to act, even though this omission also has foreseen negative consequences. This difference has been mentioned as the justification for rejecting euthanasia concurrently with the acceptance of treatment cessation. The patient’s plight may advocate palliation, though also euthanasia, as stated, but the reason that people oppose the latter is that it involves an action and not merely an omission. Or, in other words, in the case of euthanasia, the patient is killed; in the case of palliation, life is allowed to fade away. Acceptance of the ‘acts/omission doctrine’ has come under fire from philosophical circles. First, there are cases where death occurs immediately after treatment is ceased. That applies, for example, when a respirator maintaining the patient’s breathing is switched off. Second, some moral philosophers will ask whether the difference between action and omission is genuine and decisive, in ethical terms. ‘People can become equally dead by our omissions as well as our commissions,’ as Callahan (1989) has put it. The American philosopher James Rachels, using the so-called ‘bathtub example’ in an article from 1975, criticizes the acts/omission doctrine. Rachels uses a line of argument. His thought experiment has since been a recurrent component of euthanasia supporters’ arguments, and the bathtub example will be found in several guises. Rachels’s original example involves two cases, featuring Smith and Jones: In the first [case] Smith stands to gain a large inheritance if anything should happen to his 6-year-old cousin. One evening while the child

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is taking his bath, Smith sneaks into the bathroom and drowns the child, and then arranges things so that it will look like an accident. In the second, Jones also stands to gain if anything should happen to his 6-year-old cousin. Like Smith, Jones sneaks in, planning to drown the child in his bath. However, just as he enters the bathroom, Jones sees the child slip and hit his head, and fall face down in the water. Jones is delighted; he stands by, ready to push the child’s head back under if it is necessary, but it is not necessary. With only a little thrashing about, the child drowns all by himself, ‘accidentally’, as Jones watches and does nothing. Jones could save him but merely sits down and waits, so that he is sure he drowns. And indeed, his passivity (act of omission) is no less reprehensible than if he, like Smith, had actually used force to push the boy’s head down under the water. Rachels’s conclusion is as follows: The only difference between the two cases is that in one the uncle kills the cousin, in the other he lets him die. What Jones does is just as wrong as what Smith does, ethically. There is no ethical difference, and therefore there is no ethical difference between killing and allowing to die. The example is thus designed to illustrate that discontinuing treatment of a patient, who then dies, is no better ethically than actually killing the patient. The contention is, additionally, that if there is no difference ethically between allowing to die, which is permitted, and killing, which is not permitted, one may just as well permit euthanasia. Rachels himself acknowledges that the thought experiment has little in common with the doctor–patient situation in which the euthanasia problem belongs. With the example, he is merely pointing out that it is neither the active commission nor the omission per se

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but, on the contrary, the intention underlying the action or act of omission that constitutes a moral difference. But precisely because the example does not adequately fit the doctor–patient relationship, the seemingly compelling logic of the bathtub example never really comes across as convincing. This can be seen more clearly by posing the questions: ‘How do I benefit the patient?’ and ‘What is my motive?’ Both Uncle Smith and Uncle Jones have malice aforethought. Their starting point is themselves and their own needs, and the motive for their action or omission to act is self-interest. The starting point for the doctor standing at the sickbed, by contrast, is the patient and their needs; and the motive is not selfish, therefore, but indicative that the patient must avoid undue and onerous treatment. Another important difference is that the cousin has not been threatened beforehand. Before the accident he was healthy; he could be rescued, were there a will to do so. But there is not, as the uncle feels no responsibility for him, and the cousin’s fate occupies his thoughts only in so far as he stands to benefit from his death in person. The fatally ill patient is in a life-threatening situation beforehand, by contrast, and the doctor has nothing to gain from the patient’s death. The patient is in the process of dying despite the goodwill. The doctor would prefer to save the patient if there was any way of doing so, but the doctor is powerless. This leads on to the difference between the bathtub example and examples involving patients having more to do with the relationship between the persons involved – here a criminal cousin and a victim versus a doctor and a patient.

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Thus the bathtub example purports to illustrate that there is no ethical difference between acting and omitting to act, and the conclusion is convincing in that situation. To put it in ‘philosophical’ language, the acts/omission doctrine does not apply. But the example is based on a distorted representation of human relations, which is precisely the reason it can illustrate what Rachels wants it to illustrate. From the perspective of ordinary relations between human beings, it will be realized that the bathtub example is a special case which describes meanness and is therefore not descriptive of other, nonmean human relations, including the doctor–patient relationship. The difficulties with Rachels’s sophistic examples are also tied up with the notion of mankind’s ‘limitless power’, as mentioned above. In other words, that death as part of life is brought about by mankind, not just directly but also indirectly. Even not preventing the course of nature is regarded as an effect of human power. In the doctor–patient relationship it is clear that – even allowing for the conclusion that the difference between action and omission to act has the same consequence for the patient, namely that the patient dies  – euthanasia will exceed what may be done within the relationship, because the role of doctor establishes, so to speak, a particular perspective and describes a constraint on medical practice, making it more guilt-incurringly active to kill than to stop treating or relieving. Allowing life to ebb out, in other words, can be subsumed in the relation that constitutes the doctor–patient relationship, as it also entails staying with the patient to offer support and relief for as long as life is present, but at the same time without wanting to prolong it meaninglessly and at any cost.

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It can also be expressed another way:  the bathtub example and the reality of the doctor–patient relationship do not play out on the same pitch. With the bathtub example, the ball is being played on the logical practice court, and one is tricked into settling the game there. But the actual court is located elsewhere. When it boils down to it, no one – neither doctors nor others – perceives the two situations – action and omission to act – as being ethically on a par in practice. As a doctor, at any rate, I can say that no doctor is in the slightest doubt as to when he or she will be in one situation or the other. To sort of summarize the above, when the consequence of action and omission to act is the same  – that the patient dies  – it is an irrelevant difference that the intention of ceasing treatment is alleviation, whereas with euthanasia it is that life should cease. Thus far Rachels is right: The distinction stemming from intention is scarcely tenable, for if the patient’s state is hopeless and agonizing, the doctor’s intent in connection with both euthanasia and the discontinuation of treatment  – that death may occur  – may well be the same. No, despite the fact that the difference between action and omission to act will be distinct to most doctors, rejection of the bathtub example can scarcely be justified by the underlying intent being different. On the contrary, one thing only should be clear: the fact that action and omission to act in the bathtub example are equally wrong does not mean that omitting to provide life-prolonging treatment and action (euthanasia) are equally right within the doctor–patient relationship. Thus, the bathtub example is not a fair and indicative example of medical practice, since it involves the co-presence of meanness in the picture.

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4 Medical technology

To introduce this chapter a quote from the Danish theologian Rudolph Arendt (1992) is relevant. He said, A medical science that would recklessly seek to prolong life at any cost with all means available to it, and the desire for the right to euthanasia, may not be as contrary to each other as they may at first sight seem. One might ask with good cause whether they are not two sides of the same thing; that is, an attempt to supplant death as the destiny that lies beyond man’s purview. One might imagine that the debate about assisted dying is relatively new and that, conversely, due to medical science and its technologies now being able to prolong life so much, we have to have options and rules for putting an end to life. First, however, the fact that medicine does not know when to stop is not reason to euthanize per se; second, this is to severely overestimate what medical science is capable of at the same time. In reality, there are great limits to what it can do with regard to prolonging life, as it is called. Third, the ideas surrounding euthanasia and assisted suicide are by no means new.

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They were discussed and considered long before there was any more sophisticated technology. As mentioned in the introduction the father of medicine, Hippocrates (c.460–370 bc), in his pledge spoke against giving poison to anybody. Likewise, medical technology was not anywhere near as advanced as today either, though even back then euthanasia was being discussed. About eighty years ago the British author G. K. Chesterton described, among other things, the shift in motivation that would be capable of taking place when he said, ‘[there is] at present only a proposal for killing those who are a nuisance to themselves; but soon to be applied progressively to those who are a nuisance to other people’ (Chesterton 1937) (cf. Chapter 8, p. 125). So, there is reason to emphasize that the ideas about assisted dying are not the upshot of new technological developments in medicine. Since the 1970s, subject to certain rules, it has been possible to perform euthanasia in the Netherlands, without it having resulted in any legal actions. It was not legal under their penal code, admittedly, but a doctor who took the life of a patient was not prosecuted under the Dutch Coroners’ Act once certain conditions had been met. In legal terms, however, this construction – with a ban under one law, the penal code, but de facto exemption from punishment under another, the Coroners’ Act – was so peculiar that on 28 November 2000 the Dutch lower house passed an actual law on euthanasia, thus legalizing the current practice regarding euthanasia. That law was finally passed in the upper house on 10 April 2001 and enacted in 2002. The rationale for such notions of euthanasia is not the technological developments of recent years, as is further borne out by the fact that more than 90 per cent of the euthanasia is performed by general

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practitioners in private homes, where the patient is not surrounded by any technology at all (Kouwenhoven et al. 2019).

Life is rounded with a sleep He [John’s father] looked at him, as he spoke, with mild earnest eyes, drew a deep sigh, and died; yet it appeared as if he still slept. Hans Christian Andersen (Danish fairy-tale writer) at the start of The Travelling Companion, of the protagonist, John’s father A survey from the very end of the 1800s by the renowned physician William Osler (1849–1919) showed that more than 90 per cent of us can expect the euphemism of falling asleep to aptly describe our death. Very seldom will it be what is called a struggle to the death, or death throes. That is a concept more at home in the media’s rehashing of the question of assisted dying and in dramatic narratives. In 1911 Osler wrote that he wished to protest against the pictures which are given of the act of dying, ‘The Tortures of the Last Illness,’ ‘The Uselessly Prolonged Torments,’ ‘The Unbearable Memories of the Chamber of Pain,’ ‘The Pangs of Death,’ ‘The Awful Struggle,’ ‘The Sharpest Peak of Human Pain,’ and ‘Horror.’ The truth is, an immense majority of all die as they were born – oblivious. A few, very few, suffer severely in the body, fewer still in the mind. Osler says almost all Shelley’s description fits:

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Mild is the slow necessity of death: The tranquil spirit fails beneath its grasp, Without a groan, almost without a fear, Resigned in peace to the necessity, Calm as a voyager to some distant land, And full of wonder, full of hope as he. That the dying process is usually smooth is corroborated by the Belgian oncologist Beuselinck (2017). But with a story like the one told by Jersild (p. 36) – which I have also heard retold by others in this debate – we have tuned in not only to a horrific but also a horrifying fate. The English hospice doctor Robert Twycross called these unbearable, but extreme tales of sickness ‘heart-rending’. ‘A doctor who has not felt tempted to deliberately take the life of a patient probably has limited clinical experience or is incapable of feeling compassion for those who are suffering,’ I heard him say in a lecture. ‘But what can you do then?’ I asked; ‘there are apparently examples of you being powerless at the hospice. It’s no wonder consideration is given to euthanasia.’  – ‘No, it’s no wonder at all,’ he replied, ‘but in a way a hospice is a euthanasia-free zone,’ he added, ‘and I  am sure that euthanasia is fundamentally incompatible with the hospice philosophy.’  – ‘Yes, but what do you do?’ I  persevered. He then explained that these rare situations exist, and that there can be phases of a fatal illness when the patient will not be constantly aware of his or her dreadful state. And today we have wonderful drugs that can more or less switch the patient’s consciousness on and off. If we turn the drip down, the patient can come to and receive brief visits from his or her

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loved ones, a handshake, a smile, a kiss, and the patient realizes they are there, and that we are there, helping. If we turn it up again, the patient drifts back into unconsciousness. It is often the case that the periods without consciousness will get longer during those final hours. ‘But is that not a kind of euthanasia?’ I asked. ‘No, and that’s an important point,’ he said; ‘these anaesthetics do not threaten life, it’s not the medicine that takes the patient’s life, it’s the patient’s disease.’ What Twycross is describing here is called terminal or palliative sedation. In Denmark it is very rarely used. The above description may, however, be an idealization. There are nine different terms – for example, ‘continuous sedation’ – used in the literature, and there are different practices as well. Hence, although it is desirable to differentiate euthanasia from palliative sedation the line between them may be blurred, and in Belgium continuous terminal sedation is more common than euthanasia. Moreover the reporting is less regulated (Sterckx and Raus 2017). --------------------------In the vast majority of cases the pathways to death which I myself have encountered as a doctor and as next-of-kin could best be described using the expression ‘to fall asleep’. If it is one’s nearest and dearest, it is a painful loss, but that pain is one of grief. If I  had strength enough left to hold a pen, I  would write how pleasant and easy a thing it is to die. William Hunter (1718–1783), Scottish physician and anatomist on his deathbed

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The difficult pathways to death are the ones which are remembered, however, and which people talk about and fear. Such experiences – albeit impossible to shake off  – are very rare nonetheless, although they do get recounted. They are also the ones the media focus on dramatically with headlines such as ‘He lost his battle with cancer’. Emphasizing these rare cases in the argument for euthanasia is equivalent to positing a situation in which homicide would be the ethically correct thing:  A soldier sitting in his jeep gets jammed behind the wheel. The vehicle is burning, and the fire is getting nearer. He shouts to his pal: ‘Shoot me to stop me being burned alive.’ Faced with this dilemma, many would presumably opt to shoot, even if the idea is fundamentally repugnant. (However, if one had two firearms available, one loaded with a bullet, the other with effective anaesthetic, as used on wild animals, for example, I  dare say most would opt for the latter.) But we encounter that type of ‘acute’ dilemma that is relished in ethical debates. Another example: A man is standing with a knife to my daughter’s throat. I will do anything to prevent him from harming her. If I were capable, I would kill him, if necessary. But that does not imply that I am in favour of killing. Or: With torture you can extract information about a bomb that is concealed on a bus, and thereby save many people. The ‘ticking bomb argument’ can be reinforced by saying, ‘Your family is on the bus.’ In that case, will you use torture to obtain that important information? Answering yes will be taken as endorsing torture. These examples hardly ever occur, or at any rate are extremely rare. I am aware that usually the point of depicting the above situations is not to show that, for example, killing is morally acceptable but rather

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to show that not all cases of killing are morally wrong. However, sometimes such examples are contrived as a sophistic line of argument for the purpose of persuading people that one’s principles do not hold water when it comes down to it. There is no rebutting this, other than to answer, No, necessity makes law-breakers of us all, but that does not mean those laws are wrong (cf. Chapter 11, p. 167). Nor does it make it right to murder or torture. Extreme and rare situations will never be avoidable, and it is important to remember that the law should not be written against a backdrop of the extreme but based on generalities. ‘Hard cases make bad law,’ says the legal profession in England. If ‘the extreme’ forms the basis for a general law, it will potentially impact across the board in the context of euthanasia, because some may feel obliged to request it when, in their own and others’ eyes, they meet the conditions for it (cf. Chapter 8, p. 125). I met Lene during my student days. We got married in 1968. We had qualified as doctors in 1972. A short time before that we had had our first child, Ulla. The last six months of revising for exams was interrupted by changing nappies, breastfeeding, disturbed and lost sleep, and whatever else the deal includes when an infant makes its entrance into the family. Then Simon, Niels and Anna came along too. Lene became a GP, practising in Vejle, a town on the east coast of Jutland, for the past many years. Lene noticed a lump in her breast in 1995. It turned out to be cancer. It left her in peace for some years, but in 2000 it erupted, metastasizing to the bones. A number of operations and treatments followed. In the autumn of 2007 she had to give up her practice, to

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her chagrin. Shortly before that she had told me: ‘I think I must actually be the sickest person in my practice.’ Her strength ebbed away. She was exhausted and felt unwell. ‘You’ll have to help me if things get bad,’ she said in April 2008. She meant assisted dying (euthanasia), of course, and I promised I would, but in the end, it never came to that and she never repeated it after that. During the month of May, she gradually grew more and more tired. We were put in touch with the palliative team, and I  took terminal-care leave. The palliative team were professional and supportive, and compassionate without being sentimental. That spring was blessedly warm, and she was able to rest in the garden most of the time. She gradually slept for many hours every day. She was not in a great deal of pain, no more than could be kept in check. The kids came by regularly. On the evening of 18 June my sister, brother-in-law and brother were visiting. We had supper together. At 9 o’clock I  put her to bed in the bedroom. ‘Are you comfortable?’ She shook her head. I straightened up the pillows. ‘Is that better?’ ‘Yes, now I’m comfortable’. A short time afterwards she fell asleep. I retired a little later and she was sleeping peacefully. When I woke up during the night, she was still fast asleep. I got up early, took the dog out. Then I made breakfast and went up to tell her it was ready, but she was dead. So, it had happened in the short time I had been out of the bedroom. She had passed into her final sleep. For her it was a peaceful end – on 19 June 2008. For me it was shocking and upsetting. Rationally, I ought not to have been so surprised. She was very ill by that point. Anyone would have seen that, and I’m

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even a doctor. But here I was her next-of-kin above all. As someone who is so closely attached, you don’t see the one you love as a patient. I  have talked to others who have been in that situation, and they have had a similar experience. Although death is expected, we do not expect it. It cannot help but come suddenly: either owing to the form it takes – the sudden death – or strangely enough also when, as here, it happens in a gradual process with increasing fatigue and eventually ‘that dreamless sleep’. The sudden thing here is that the separation sets in all at once, and all at once life splits into a before and an after. With euthanasia, everything can be experienced less suddenly, since it is within our gift to determine the day and the hour. Surely that’s good, people will instinctively think, if they are horrified at the actual experience of the sudden, because they can then get used to the idea. Yet is it good for both the dying person and the survivor that the time can and must be decided? Perhaps there is also a risk of death being decided and appointed too early on, once all rationality suggests it is the most reasonable resort (Beuselinck 2017). Jean-Paul Guilbert lost his wife, Inge, who died after having been very ill for the past two years. In a documentary he relates that he also regards the final period as a blessing. Just four days after her death he says, ‘We were really fortunate, having those two years,’ because the spouses ‘managed together to get through everything’ it was important to talk about. And he repeats it six months later, when he meets the documentary-maker again: ‘If we hadn’t had those two years, I don’t know where I’d have been now. It would have been harder in that case.’

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A Dutch woman had requested euthanasia, and her request had been granted out of consideration for her illness, which was agonizing and deemed hopeless. (According to the Dutch rules a patient does not have to be dying if the conditions of a hopeless state and agonizing illness are met.) The time had been fixed. Her despair was clearly mounting as the day approached. Whenever the staff changed the intravenous fluid, she would look up out of the corner of her eye and say, ‘Not yet, remember.’ The offer of help turned into the threat of when. With its true-to-life dialogue, the 2014 film Silent Heart, by the Danish director Bille August, lends clarity to several aspects of the problem of deciding on and timetabling death. The protagonist, the mother, has amyotrophic lateral sclerosis (ALS) and wants to commit suicide before she grows too weak to see it through. She gathers those closest to her so that they can be together with her for her last two days. But the mother’s staging of her own death also reflects a self-obsessed and powerful ruthlessness, because it means that everyone has to be involved and held responsible for the decision. She is evidently a strong person, and what she puts those around her through in this way, especially her children, is nothing less than fierce. The younger of the two daughters opposes the contrived and stilted project. She has no desire to lose her mother. It seems to be an altogether healthy form of resistance. She still has so much time to spend with her mother and despairs at having to just accept that it all has to end so abruptly now. To start with, the elder daughter is completely awkward in her exaggerated thoughtfulness and understanding. Their last time together must be good, after all, and she wishes to pay proper respect to her mother’s right of self-determination. But the facade cracks

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when all of a sudden, she senses that there are things going unsaid, and that other motives may also be mixed up. Above all, the film shows that being ignorant of the actual time of death, and even being allowed to suspend the knowledge of such inevitable death, may be blissful. On the other hand, the actual act of fixing the time of death will torment both the mother and the nextof-kin. The mother appears serene and has decided that the family should be together to enjoy some good, last shared experiences. But it’s a family like any other, having had a life together for better or worse, with a variety of things in its baggage. That is why the mutual cordiality among them seems so sham, including her own, and she herself grows anxious. ‘I’m afraid!’ she exclaims several times. So, despite being rationally justified on the face of it in her hopeless situation, this is a planned construct that includes so many irrational and emotional components as to be uncontrollable.

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5 The two main arguments in the pro-/ anti-legalization debate

As mentioned, two arguments are generally cited in favour of assisted dying, namely that unnecessary (or unbearable) suffering must be avoided and people’s right to self-determination must be respected. The arguments emanate from the basic ethical requirement of wanting good, and initially they seem convincing. Of course, suffering must be avoided, and of course the right to self-determination must be respected. I believe that too, but if I subsequently fail to answer the question ‘Should assisted dying be legalized?’ in the affirmative, it is due to the fact that the truisms we take for granted do not necessarily add up to that conclusion. The arguments in favour of legalizing euthanasia and assisted suicide are easy to follow as a starting point, then, but they can be simplistic. As simplifications, they admit of an apparent certainty, but in so doing they also become appealing. Euthanasia is not to alleviate and liberate a patient of suffering; it is not to remove the suffering from

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a patient. It is to remove the patient. And what about the presumed respect for self-determination with regard to timing one’s own death, which also needs to be examined more closely. The arguments about the right to self-determination and compassion for unbearable suffering are interconnected, yet at the same time mutually exclusive. Self-determination must not be respected completely. As a reason for the doctor to perform euthanasia, it is not enough to say, ‘The patient asked me.’ The patient’s quality of life-value is also required to be deemed sufficiently low. The justification for so-called voluntary euthanasia is thus underpinned by the notion that certain lives are not worth preserving rather than the existence of a request. Assessing and appraising whether the patient is suffering enough for the request to be accommodated is necessary, that is, the patient’s life-value must be so slight as to render euthanasia the more merciful option. That is the point of the considered assessment. Hence respect for the right to self-determination is relative; it has to be weighed against what is felt to be compassionate. But if compassion is to underpin the idea of euthanasia, then other patients who are suffering but cannot ask for euthanasia  – owing to infirmity or dementia, for ­example – or minors must also be eligible for being killed. They do not have the option of selfdetermination, but their suffering can be just as great. Does the mentally incompetent person suffer any less? In a nutshell, why should the good, compassionate action, euthanasia, be restricted to those who are legally capable and competent if their quality of life happens to be assessed as low or their condition can be described as wretched or unworthy? (In both the Netherlands and Belgium, they

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have acted on the consequences of this logic in a way – see Chapter 8, p. 125) John Keown (2002) illustrates this reasoning by presenting two imaginary identical twin patients who are both affected by the same terminal illness and suffering to the same extent though one is mentally competent while the other is not. If the one who is competent is given access to euthanasia because he can make a responsible decision and is experiencing unbearable suffering, it would be difficult to build a strong case opposing the extension of euthanasia to the second twin. This is because even though he does not have the mental capacity to make a decision, he would be suffering unbearably in a similar manner to the first twin. So, although the arguments do interconnect, as described, and cannot be used alone, I shall deal with them one by one.

Avoiding unbearable suffering The thought that suffering should be avoided and alleviated as best as possible is not merely that of anyone who has taken the Hippocratic oath but of any normal thinking and feeling human being. The argument holds an altogether obvious appeal for everyone, and the entire gamut of pity, fear of suffering, fear of death and desire for rational drive, dynamism and decisiveness is doubtless involved in the immediate process of taking a stance. Suffering must be managed, we cannot just leave it be. As it moves from the abstract to the practical, and close to home therefore, the desire for the patient to escape more suffering may include the wish for that patient to die – in close

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relations often worded along such lines as ‘If only our dear so-and-so could now be granted peace.’ Unbearable suffering is not just unbearable for the patient, it can also be unbearable for those who are closely connected with the patient. They see their loved one suffering pain, respiratory distress, nausea, anxiety and fear. I believe that mercy killing does cross people’s minds or is even contemplated when they follow the progress of an illness in one they hold dear, and when the situation is characterized by futility and hopelessness. This wish for him or her to be ‘released’, so to speak, obviously does not stem from any malice. I  know from my own experience that being close to one who is going to die, and whom one loves, is harrowing. Two thoughts wrestle with each other. One is that the person I hold dear, and who is so close to me, must now be allowed to let go – to ‘stop fighting and give up the struggle’; the other is that it would also be a relief for me myself, especially because it is so gruelling to be close to the suffering while at the same time basically impotent to do anything about it. But what emerges from that mental tug-of-war is that all wishes can or need not be translated into action – here euthanasia. It is important that we do not get to have our way in every area of life. If there was a law permitting it, the dilemma between wishing that one’s loved one is granted peace and experiencing a sense of duty to make it happen – that is, with the help of euthanasia  – would be a pressing one. The Dutch wife of a dying patient was placed in this untenable position – as she put it so succinctly – of ‘being my husband’s murderer or having him tortured’ (Prager 1990).

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The proposal to legalize euthanasia is sometimes justified by saying that this humane action, euthanasia, which is even in keeping with the patient’s own wish, must be decriminalized. So, it has something to do with guilt and blamelessness. He who takes on the task must be rendered blameless. Most people imagine it being a doctor, and that doctor must be able to undertake putting-to-death of the patient without incurring guilt. In practice that means without running the risk of being prosecuted. But the idea that we can be rendered blameless is fundamentally an illusion. We cannot go through life without taking the blame for both actions and acts of neglect, both for what we do and for what we fail to do. Whatever we choose, we will not be blameless. And when we love, most of all, is when we never become blameless. As the Dutch woman puts it, she may feel guilty for her failing courage to have her husband put to death, but if she does have the courage, she may feel guilty in a different way. However we explain it to ourselves, we will have a kind of original guilt that accompanies us by virtue of existing. It is part and parcel of actual existence, and that guilt grinds us down, particularly when we are at life’s crucial moments. There is no solution, because it is not a problem that can be solved with legislation or with any amount of logic and rationality; it is a basic condition. --------------------------In his memoirs, the Danish author Johannes Møllehave talks about his mother’s death. She had cancer, and the last fifteen years of her life were a succession of treatments and operations. But she was indomitable and had a rare sense of humour. For the last month she

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was alive Møllehave lived with her in a small house on the island of Langeland. He sees her being ruthlessly worn down by the illness. More than one night in Langeland, I thought of forcing a pillow down over her face – and I deluded myself into thinking it would be compassion. I asked the doctor to give her more than he himself could justify, but he refused … And then, after one such sleepless night of standing at the water’s edge, wishing her dead  – I  returned to find her awake, feverish, emaciated and racked with pain – and yet so genuinely happy: ‘Look, I’ve been given another day!’ And then you thought, here’s me, ready to kill her. Out of compassion! I would not be able to write a treatise on euthanasia. Was it her or me I wanted to free? After another night when the illness had been tearing and grinding away at her, he experiences her cursing him: She opened her eyes and cursed me. I’ve read about curses in the Old Testament, but I’ve never heard them in other connections. She said:  ‘You’ve only wished me dead! May you yourself die in pain! May your house burn down! May your children die!’ I’ve tried telling myself it’s something I dreamt; after all, I hadn’t slept for ten days either, but it was all just too real. She cursed me. … And it was true that I had wished her dead; and one morning after another her joy at the arrival of the day had, in those few painfree moments, deemed my wish to be a wish made by someone without insight. … Does anyone have the right to wish for the

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death of another person? And can they be quite sure that it was out of love – not impatience, and not to spare themselves? I wonder whether indeed that curse was not deserved? --------------------------The Danish historian of ideas Johannes Sløk made no secret of the fact that his lifelong ardent advocacy of euthanasia was due to him, as a young priest, having met a desperate woman who had lost her spouse and children. She no longer thought she had anything to live for. He could give her nothing, bring her nothing; he had only his empty hands. Sløk subsequently expressed his point of view in stark terms, saying that despairing, disconsolate and depressed people should be able to demand help from the doctors to carry out suicide. He proposed a clinic, which people who had decided on their own death could approach. In this account from Sløk’s encounter with the woman, I hear two discordant notes, one as the principal theme: desperate powerlessness; the other as the theme that takes over and gradually becomes deafening, namely overestimating what assessment we should take on. Why? Because our judgements are short. They extend only as far as we can see. Sløk could see no further than her desperation. It was also difficult to see past, for it towered up in front of him; and he could hear nothing other than his verdict: This life is bereft of hope. Proponents of assisted dying commonly unearth case histories describing great suffering. We almost dare not think about, let alone be at close quarters with such suffering. Yet we also know people who, from an outsider’s perspective, have a lamentable existence and enjoy life nevertheless. Wheelchair patients tell us others think they have a

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poorer life than they themselves think. A survey of dialysis patients revealed that those around them – even including those who assisted with the dialysis – considered the patients’ quality of life to be less than they themselves did. The cartoonist and author Rune T. Kidde once said that if he went blind, he would not want to live. He did go blind from his diabetes and then said he could not understand that he had said such a thing – that he had thought such a thing. So, we realize that such vigorous and spirited examples are known, and I do not say that in order to romanticize the tragedy. But the key thing is that those around us are quick to see the poor, the wretched – and sometimes quicker than the people involved themselves – when tasked with gauging the value of life. The relatives are at pain to show compassion when they find it all to be devoid of dignity, which is the expression often heard. Naturally, they are sympathetic to those they care for, but death can be hideous, and they may also be frightened by the thought of having to experience something similar themselves. That in itself can prompt them to wish to put a stop to the process of death. Specialists in palliative care from Flanders, Berghe, Mullie, Desmet and Huysmans (2017) conclude:  When nothing more can be done, we can – impatient with death – still perform the last and final act, euthanasia as the cure for a dying process that is too slow. Backed by the idealisation of euthanasia in popular media, celebrating oversimplified autonomy, this constitutes a new social framing of death by euthanasia as the new dying: timely, properly scheduled, highly economic, without

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ambiguity or uncertainties. … Euthanasia becomes the victory of postmodern man on suffering at the end of life. The question remains: ‘Which is prior: unbearable suffering for which euthanasia is the ultimate solution? Or does the suffering become unbearable because, henceforth, there is such a way-out as euthanasia?’ Could it be that, in the long term, unbridled euthanasia thus enhances the suffering it pretends to relieve? There may be reason to ask the curious question whether mercy killing is merciful. The Danish philosopher Jacob Birkler (2015) gave an instructive example:  What is the typical response from a relative if a member of the immediate family commits suicide, whether it is down to illness or profound degradation? Very often the reply is ‘It came right out of the blue. If only I’d known she was having such a difficult time of it, I would have been there for her rather more.’ The immediate reply is never ‘If only I’d known she was going to commit suicide, I would have helped her with it.’ Even when we feel a loved one’s great suffering, we try to support, help, ease, comfort and so on. In theory, and that means when people are not in direct contact with a distressed fellow human being, many will regard euthanasia as the humane answer to unbearable suffering, since euthanasia is thought to provide the possibility of a ‘good and dignified death’. But when it comes down to it, it is a contradiction in terms that euthanasia is supposed to improve life by destroying it. As mentioned, euthanasia is not about alleviating or removing a person’s suffering but about removing the one who is suffering. Or as they say, ‘Euthanasia is

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killing the pain by killing the patient.’ Thus, euthanasia not only ends the suffering but also the patient’s biological and social life (Materstvedt 2012). In other words, memories, previous experience, identity and the possibility of receiving smiles, care and love are all removed. Euthanasia means something good to the patient but after that the patient means nothing anymore (Velleman 1999). Whether the suffering is unbearable will vary. Some people find life itself unbearable and commit suicide. They can be depressed, forsaken, overlooked and they can perceive life to be empty and meaningless. Some commit suicide on account of physical illness. But should this entire spectrum of unbearable suffering and unbearable life be turned into a medical matter for assessment (Callahan 1992)? There may be medical professionals who will unhesitatingly answer yes, thinking perhaps that their training gives them a special omnipotent qualification to handle all manner of welfare-related issues. In moments of hardship the big issues take on urgency, but questions about the meaning of life, why I have contracted that illness, why I have to suffer, why I have to lose my loved ones, my health and my life all amount to expressing a desperate lament. That lament is formulated questioningly: Why am I the one to be afflicted by this? But existential questions are not questions in the general sense, to which anyone expects there to be answers. I do not believe a doctor’s training makes him or her any more able to reply than anyone else. If the doctor forgets this, it may lead to the thought that a lethal injection is the answer to those questions. It is the illusion that a technological answer is always to be found to an existential question. The Belgian oncologist Beuselinck (2017) says in the same vein,

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When patients no longer believe that their lives are worth living, this compels doctors to become judge of autonomy questions and of existential/mental suffering while seeking to resolve these problems through the administration of death. … [Then] the doctor is acting outside his or her proper role and competence, both in relation to the indications, and in relation to the proposed solution. --------------------------A colleague and friend told me about his mother, and I asked him to send me his narrative. It is somewhat detailed but I have included it here in its full length (with his permission) for two reasons. One is that it shows that suffering is multifaceted although it from the outside and from rational points of view immediately would be denoted unbearable and devastating – the stepwise deterioration might at first glance be seen only as merciless, but in fact can also bring about a gradual acquiescence that may be blissful. The second reason is his expressing the belief, in the final paragraph, that he was saved from making a hard choice in a dilemma. This is his story: My mother had an operation for a growth in her colon. They had removed the tumour and put the intestine back together so that she could avoid having a colostomy. But she ended up with a stoma after all, because a leak had occurred in the suture, resulting in an abscess in the abdominal cavity. Mother, who had been optimistic, now became very dejected. ‘You have to have faith in it,’ I said. ‘Is it worth it?’ she asked.

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The hospitalization period turned out to be long because of the complications that supervened. There were many very old ward cases there. Some of them were demented, others were particularly taxing in some other way. Still others made demands that were unreasonable – some as good as viewed the staff as servants. But my mother was reticent about calling for help. She was younger than the average, not quite sixty. Her despondency bordered on withdrawn depression, and for that very reason she made few demands. At one point she contracted cystitis and was unable to control her bladder just when she felt the urge to urinate. They had fitted her with a nappy. Once my sister had asked where she might quickly find a bedpan for the commode. But the answer came back:  ‘Well, there’s not really much point now  – she’s wearing a nappy’. My sister was flabbergasted and stammered out: ‘No, but I think it might be nicer for her to try and control it herself ’ – a lame objection of which no notice indeed was taken. And when at one point I myself had asked one of the nurses if she could fill me in on the situation, the reply was: ‘No, she’s not my patient.’ – ‘So, whose is she?’ – ‘Sally’s.’ – ‘Can I have a word with Sally?’ – ‘I don’t keep her on a short lead, you know!’ As you can see, the tone was sometimes dismissive, and my siblings and I got the impression that both we and the patients were an inconvenience – and I suppose that was one way of looking at it. I complained in a letter to the hospital. The tone became rather irate, but both I and my siblings were concerned. My younger sister and elder brother constantly consulted me because I’m a doctor, and naturally enough I was the one they shoved to the front in our

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dealings with my mother, and with the doctors and hospital wards she came into contact with. Our parents had divorced 16  years previously, and although mother was modest and did not ask for help outright, we were nevertheless the ones at the coalface when it came to providing backup in word and deed. And more so after she had fallen ill. I lived closest, so much of the practical stuff fell to my lot. My letter to the ward manager (copying in the hospital administrators) prompted an obliging reply which, as expected, referred to under-resourcing and being generally busy, but was in fact apologetic too, and further offered us a meeting if any additional elaboration was needed. Albeit obliging, it seemed evasive in all its kindness. Nonetheless, we got the impression that it helped. Our mother was given a little more of the ‘VIP’ treatment. Since then I have always advised friends and acquaintances to complain upwards if they have been unable to get through or have felt badly treated. Otherwise there is no telling whether the management definitely knows how things are; and no one’s treatment is the worse for it. I do not believe, for example, that there is any need to fear that someone will get their own back on the patient. Basically, people’s intentions are good more often than not. But at the same time there can sometimes be a culture that nurtures the idea of patients being there for the sake of the staff, while by the same token patients and relatives take up the staff ’s time. And if such conditions really are a result of some incipient brutalization, not just a reflection of thoughtlessness, then objections must certainly be raised. Although Mother never managed to have her intestine replaced, as she had hoped, she grew a little more used to the colostomy

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bags and the daily routines with them. My sister asked whether I had spoken to Mother about her illness. I had certainly avoided doing so to start with. We doctors find it hard, perhaps because we also sense our own failure. But actually, she knew what was what. She knew it was cancer but had gathered that the operation had gone off well. Later on, I read the medical records together with her. They regarded her as cured, and it was good to be able to say that. But the colostomy troubled her; she was so meticulous about herself and having to change herself that way was all very new and unfamiliar to her. Gradually, however, she resigned herself to it and received excellent help and instruction from the nurses on the ward and from the district nurse. But she deteriorated. There were more hospital admissions, and she received new treatments, which she carried on with after being discharged. It wore her out. Outwardly, she was composed, but her eyes revealed her fears. I and my siblings visited her as often as was possible. Almost under its own steam, a kind of rota emerged – a duty roster. We had not bargained on her noticing it, but one day she said: ‘Well, it’s your sister’s turn to come tomorrow. She’ll call this evening to ask whether it’s convenient to look in tomorrow.’ What was exhausting during that period was trying to stress the bright sides; they were not that easy to spot. I used to beat around the bush rather than talk about anything menacing. If I  noticed she wanted to broach a topic, I changed the subject. I was in two minds as to whether she wanted to. Or was I  afraid? Eventually I got to the point of wondering whether I was letting her down by being evasive. So, one day I just came out with it and said that I was afraid of losing her. She said something along the lines of: ‘There’s

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nothing I  can do about that. I  can’t comfort you, and you can’t comfort me. But it’s good that you say it, and I wouldn’t exchange my life for a different one. It will be shorter than I had thought, but it’s mine. I’ve had love. I’ve given love. That’s the most important thing. I’ve given life to you three. That’s the way I’ve been thinking all this time. I wouldn’t swap.’ Then we got around to talking about which hymns to sing, about her wanting to have a funeral service, and where the urn was to be deposited. We cried together, but it was strange – I was more light-hearted than I had been for a long time by the time I went home. I called my siblings straight away to tell them that Mother was totally serene. My sister got paid leave from work to care for her, and we others relieved her as soon as we were able. We got to know a string of home nurses and a string of different natures:  some forthright, competent and with a natural way about them; some professional, some more frosty:  ‘Onwards and upwards!’ Others were too full-on, ‘over the top’, and others still too breezy: ‘Bye for now – enjoy yourselves!’ During the final days we took turns to keep watch. Mother was awake for short intervals before she dozed off in her tremendous tiredness and because of the painkillers she was on in tablet and injection form whenever the home nurses came at regular intervals several times a day. But before that she would often get to the point of becoming anxious and complaining. We straightened her pillows, gave her water to drink through a feeding cup and stroked her on the cheek, kissed her and held her hand, but waiting for the home nurse to arrive was fatiguing. Whenever I  was ‘on duty’, I  would

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sometimes administer the next dose a little before time. That was after consultation with the nurse, but otherwise the agreement was that I was not to play the doctor here, merely a relative. I remember one night, when I  was sat at her bedside. It was very quiet. In the lounge I  could hear just the trot of the wallclock:  tick-tock; then the winding of the striking mechanism, when it would otherwise have rung, only we had disconnected the mechanism that struck the hour. Mother dozed, but in between she would sigh deeply or groan. When she groaned, it was bad, but she was barely conscious, I believe. I thought it would be good if her timely release came soon. But at the very instant I thought it, I also pondered why I wished for it. Would it not also be a relief for me? Was it my mother who would be at peace, or me who would now be at peace from my mother? Indeed, at peace from more upset and more fatigue. She would wake up occasionally and then say such affectionate things to me. It was as if she wanted to dredge up all the good from her reservoir of love. Some days later I relieved my sister in the morning. Mother was asleep. My sister thought mother was in pain at times, when she would surface a little. My sister had not managed to get very much sleep. She had tried in the armchair in the living room but was unable to sleep for the clock ticking. But she did not dare stop it. Throughout the day mother had flashes of wakefulness, when I got her to drink a little. She would not touch food. By now I had become more generous with the painkilling medication I  was giving her. I administered it at shorter intervals. I could not bear to hear her groaning. I nevertheless held back, because I did not

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want to give her such a large dose that her sleep would last several hours; suppose she did not wake up … There must be no direct link between the injection I  gave and her dying. In a way, too, I found myself wishing the whole time that she would wake up so that I could tell her again how much I cared for her. Whenever she surfaced after a laboured sleep, I got the impression she was troubled. But why must there be no link between the medicine I administered and her being able to pass away quietly? Perhaps because I  did not dare trust my motive. Whenever her breathing vanished completely and became inaudible, I  could wince at the thought of her being dead. But shortly after that she would breathe in with a long deep sigh. Then some deep breaths, which gradually became inaudible again. I  have previously seen Cheyne-Stokes’ respiration in patients. In their case the temporary lack of oxygen to the brain was pathophysiological, but here it was more like the body would not let go of the soul. The thought of helping her to ‘shuffle off ’ her ‘mortal coil’ occurred a number of times, and it was contributing to my weariness. Late that afternoon I went home when my brother relieved me. Mother had been unconscious for most of the day, and I had managed to doze off for a bit in the armchair for brief moments. I staggered into bed and fell into a deep sleep until well into the night, when the ringing of the phone woke me. My sister told me that Mother had just died, just as she and my brother were both there. She said Mother had been awake for a brief moment and had been asking after us. But then she had just sighed and died, as they held her hand. It was strange, but I felt anger at not having been there. It was almost unfair that she had to die while I  was gone. The district

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nurse was there when I arrived. She looked bleary-eyed. She had opened the window briefly, ‘to let the soul out’. Mother’s eyes were closed, her lips so pallid that they were the same colour as the skin on her face. She looked lifeless, soulless. Her hands were folded, and between them they had placed a rose. She had been ‘released’. We sorted out all the practical arrangements. It is barely two years ago now, but occasionally I still think of the pangs of conscience I had had a couple of times – a bad conscience at not having had the courage to help her escape this world on one of the occasions she appeared to be having a tough time of it. But at the same time, I still have my grave doubts. It is strange that I cannot attain clarity as to what was right. I am an opponent of euthanasia, but I can feel that the thought and the desire were there. And yet it is still good that there is a distance between our desires and our actions. Frankly, I have wished some of my fellow men dead at times. I am glad that my wishes did not become reality, for then I really would have had a bad conscience. But I have actually wished some people dead for their own sake too, so to speak. Some very sick patients or some severely disabled children who have been admitted to our ward. I’m glad there’s a barrier to that kind of thing, for if it became a genuine possibility, I would actually feel guilty if I failed to act. ---------------------------

Respect for the right to self-determination Another word for the right to self-determination is autonomy. It comes from the Greek and originally means ‘self-rule’. These days

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autonomy is an enshrined principle, and it is a strong trump in any ethical discussion. Many also regard it as the most powerful trump in the argument for euthanasia and assisted suicide. The argument is based on mankind being self-reliant. The individual’s decisions cannot be taken by others or replaced by others’ decisions. Of course, that is the case. Who should make my decisions, if not I myself? If others took my decisions, they would not be mine. Particularly in our part of the world and in our age, the pro-euthanasia arguments that make reference to the right to self-determination and a free will make a persuasive point of departure. No one must touch our freedom and our right to self-determination. Those responding to the question of euthanasia, when given in an opinion poll, can scarcely imagine not being able to make up their own minds. And getting into situations where they would wish not to have the option of having to choose is not the first thing that comes to mind. The strongest doubt of all to arise is whether the right to selfdetermination is always and under all circumstances exercised as the result of free will, by which I  mean a totally unconstrained will. In this debate it is as if it is forgotten that all essential decisions we take are made in some relation to others. It is forgotten that no choice is free-floating. We seem to forget the adage of John Donne from 1624 that ‘no man is an island’. No serious decisions are made in isolation. Decisions we take affect other people, and they are affected by other people. We are vulnerable people, in common with others  – in dependency of others. We have all been contextualized in settings involving our fellow human beings to a greater or lesser extent  – socially, and among colleagues, friends and family (cf. the quotation by Henriksen and Vetlesen on p. 19).

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How autonomous is an ‘autonomous decision’? Can there be problems exercising autonomy in the context of decisions about one’s own death? An ‘internalised external pressure’ has been further specified by the American professor in ethics Daniel P. Sulmasy (2017):  The pressure to conform to the views of peers is so great that prevailing social mores are often introjected and re-interpreted by the subject as his or her own autonomous preferences. This can clearly happen in the setting of legalized PAS [physician-assistedsuicide], in a society in which celebrities say on TV, ‘If I ever get that way please shoot me’, and polls show the vast majority of persons supporting legalized PAS or euthanasia. Legalization flips the default switch, psychologically, for those who suffer from chronic, disabling, and eventually lethal conditions. … And so the patient asks ‘Doctor, would you give me the pills so I can end it all now?’ Since the words come out of the mouth of the patient the request may seem autonomous, but it may well be, in reality, merely the introjection of the disdain in which the patient is held by a community that fears its own suffering and wants to eliminate reminders of that possibility from the environment. The physician accedes to the request and, on the surface, all seems well. Yet an ominous fracture in the moral bedrock of society has taken place deep beneath the tranquil surface. (Sulmasy 2017) --------------------------Many people view autonomy in connection with assisted dying in the same way as our God-given right to choose our own course in life. It is a continuation of an ideology that characterizes our life. If we are masters

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of our lives, then surely, we can also master death. We are mentally competent, surely. It is forgotten that the decision – the decision about one’s own death – is not made in a day-to-day context and is not made in a situation where the person is in supreme self-control, because wishing for one’s own death is not a day-to-day state. It is a wish that arises against a backdrop of desperation and a feeling of hopelessness, and possibly a feeling of being superfluous. It is under these circumstances that the right to self-determination must be exercised and the decision be taken. Such a situation can be a fragile basis for autonomy and a fragile basis for decision-making. It is a decision that is taken not nearly as well as when healthy. The choice regarding one’s own death therefore becomes so completely different from the majority of other choices usually associated with the concept of autonomy. If assisted dying had been legalized, the possibility would inhabit everyone’s consciousness – the patient’s, the doctor’s, the relatives’, the care staff ’s – even if not formulated as an out-and-out offer. But if a law on assisted dying gives the patient a right to die, that right may turn into a duty to die. ‘How autonomously can the weakest people act when the world around them deems their ill, dependent and pained life unworthy?’ asks the Norwegian philosopher Knut Ruyter (1998). Able, healthy people are scarcely able to imagine themselves in a situation where they do not decide freely. ‘For it is always the person not in the predicament who knows what ought to have been done in it,’ Dickens says in his A Christmas Carol. A person in severe suffering and despair can be competent but is scarcely in mental balance. A  Dutch study which evaluated the state of mind of patients who requested euthanasia showed that very few of them were in mental balance. Most were depressed, frightened or just plain petrified.

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The distinguished professor emeritus of Law at the University of Michigan, Yale Kamisar, has, over the years, consistently opposed the idea of legalizing assisted suicide. As far back as 1976 he asked the question, Is this a kind of choice that we want to offer a gravely ill person? Will we not sweep up, in the process, some who are not really tired of life, but think others are tired of them; some who do not really want to die, but who feel they should not live on because to do so when there looms the legal alternative of euthanasia is to do a selfish or a cowardly act? The patient can find himself or herself indirectly under duress to adopt a stance, to choose and perhaps to choose precisely that particular option if his or her state is otherwise considered sufficiently pained and the quality of life sufficiently low. The patient must be at liberty to choose euthanasia freely, of course  – that is how it is presented – but the point is that the patient cannot get out of having to choose. It has been called the ‘prison of freedom’. The Dutch cardiologist Richard Fenigsen (1989) tells the story of a woman in the Netherlands who no longer felt able to look after her sick husband. She offered him a choice between euthanasia and admission to a home for the chronically ill; afraid of being in unfamiliar surroundings and in the hands of strangers, the man chose euthanasia. It was his freedom of choice. With any decision comes responsibility. What should a patient set store by when deciding whether he or she wants to carry on living? The nice thing to do in other of life’s choice-situations is to take

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others into consideration. So why not here too? ‘Normal’ considerate behaviour will only compound the already depressed person’s feeling of being a burden. In this way our own conscience will also forbid us from burdening our families and society with our sick, unworthy life. ‘It is the right to be a burden that is at stake,’ the theologian Ole Jensen said. Already in 1994, the UK House of Lords’ Select Committee on Medical Ethics stated, ‘We believe that the message which society sends to vulnerable and disadvantaged people should not, however obliquely, encourage them to seek death, but should assure them of our care and support in life’ (Lancet 1994). The English general practitioner Iona Heath (2012) expressed it this way:  It seems to me to be impossible to ensure that an apparently voluntary request for assisted dying is not in some small way coerced. It is all too easy for sick and disabled people to believe that they are becoming an intolerable burden to those closest to them, and indeed they often are a burden. In such circumstances a request for assisted dying can become a sort of sacrifice on the part of the dying person, with complicit, self-interested support from relatives, professionals or carers. A particular possibility will always create a kind of compulsion to take a stance on it. A  parallel is when, in connection with ‘free abortion’, people talk about ‘compulsory abortion’ following in its wake. Because the possibility has been created, the pregnant woman is forced to consider it. A young pregnant woman can be coerced – and

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it does happen. Her parents may mention that she will otherwise have to give up her traineeship. The father of the child-to-be can refer to her having the option of an abortion and refuse to provide support other than that imposed by law. An example worth mentioning of a theoretically free choice which is not actually so is that in some third-world countries, a person can sell one of their own kidneys for money. The cash can be used to buy food or consumer durables, or to afford a dowry or seed corn. It happens in Pakistan, among other places. A Pakistani has autonomy, does he or she not? And in this respect then he or she is indeed at liberty to do whatever he or she pleases with his or her kidneys. It is, after all, his or her own kidneys and his or her own free choice, isn’t it? I believe the answer is that it is a society’s job to protect its weak members. Society must not provide options for absolutely any decision whatsoever, including possibilities which its members ought to be protected from having. Supporters of a law on euthanasia will argue that, if there were a legal option, the pressure potentially placed on the debilitated and maybe onerous patient to opt for euthanasia could also arise in connection with treatment cessation, that is, in situations where medical treatment and medication are discontinued because the treatment no longer benefits the patient but just prolongs an agonizing condition. Why should direct or indirect pressure be more pronounced or more likely in the case of euthanasia than the decision to discontinue treatment? A patient can feel pressured into relinquishing a treatment and all sorts of motives can underlie such pressure. One can imagine the treatment being too costly or the bed occupied by the patient

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being needed. Examples of this kind have been described, where patients are subjected to pressure. There is no need to even consider cynical motives; it may merely be that the doctor finds the treatment pointless and futile. Moreover, it can be contended that the argument that euthanasia cannot be undone might perfectly well apply to the decision about treatment cessation. The risk of making an error of judgement can also be present. The objections have logical force, but that need not endow them with any crucial practical importance. The fact that life ebbs away, and that we allow it to happen, is part and parcel of our reality and the practice of medicine. The fact that life ebbs away is precisely not synonymous with the doctor being the one to bring about death. It is the illness that ends fatally, but as previously mentioned (p. 40) there is a difference between choosing a path that leads to death and choosing a path that does not avert it. That was alluded to under the deliberations on man’s power over life and death in connection with the two situations: euthanasia and discontinuation of treatment. Basically, it remains a question of whether euthanasia can be accommodated within the doctor–patient relationship and, without wishing to overstate the case, within the culture we want to prevail in our society. In 1993–4 Dutch television produced a documentary, ‘Death on Request’, about Dutch euthanasia practice. It follows a 63-year-old resident of Amsterdam, a former restaurateur, Kees de Joode, through the last months of his life. The footage has been cut to make about a one-hour film, and one of the producers’ screening conditions was that it was not to be shown in abridged versions in any country.

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I saw the film on Danish TV in 1995, and it made a strong impression, as it has done on everyone who has seen it. I saw it again on a palliative treatment course in Nijmegen in the Netherlands in 2002. About fifty course participants sat in total silence. It is about life and death, point blank – no one is unaffected. --------------------------Kees de Joode had amyotrophic lateral sclerosis (ALS) and knew his illness was incurable. He had decided to opt for euthanasia when the time came, and amongst others he himself, his wife Antoinette and his GP, Dr Wilfred van Oijen, had consented to take part in the documentary. Originally, the idea was to have the final shots show a closed door, behind which the euthanasia was to be performed, but when people – here the couple, the doctor and the TV crew – are together over such a long and serious trajectory, a trust instinctively develops between people, and the camera follows the patient right into the actual moment of death. I remember that the review of the film in the British Medical Journal (BMJ) included the sentence:  ‘Have no doubt. This is propaganda’ (Millard 1995). But I realize that one’s view of the film depends greatly on the eyes of the beholder. The Danish man of letters, Thomas Bredsdorff, wrote in his 1995 TV review something along the lines of: ‘After this film there will have to be a national petition for those of us in this country to have just as civilized legislation as they have in the Netherlands.’ I myself saw a poor and clearly lonely man who had come to a decision which he now had to stick to because he had embarked on

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‘the project’. And finally, I saw what for me resembled an execution. That is how differently a film on this subject can be perceived. The documentary film is clearly a debate outline in favour of euthanasia, but in my eyes, it ends up indirectly telling another story. It illustrates a number of the problems:  the dubious conditions governing the right to self-determination, the pressure from the surroundings, the patient as a burden that can be eliminated, the distortion of the doctor-patient relationship, the assessment of lifevalue and the need to gloss over the action. I think the term propaganda is correct. The film is accompanied by mournful cello music. The doctor comes across as relentlessly sombre and grimly persistent. He sits in his car, deep in thought. He gets home from work but is snappy to his wife; he has more serious things to think about. Goes straight out into the garden and looks up towards the eternal stars in the evening sky. He goes to the pharmacy, where he buys the necessary medication for the euthanasia. He pays regular visits to the home, like the painstaking GP he is. He is also seen on a completely different call to the worried mother of an infant. He examines and reassures. It has nothing to do with the main scenario but has been deftly contrived to show us the good doctor covering both life and death. One life has served its purpose and must be terminated, the new one must be attended to. But the patient is the protagonist. He is severely debilitated by his illness and moves around his home in a wheelchair. At one point another doctor turns up:  ‘You know why I’m here?’ Kees is in the know. Rules are rules: Another doctor has to give his consent that the condition is hopeless and check whether

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the patient is sure about his decision. Then the doctor says:  ‘I understand your decision, because otherwise you are going to suffer dreadfully. You will choke to death.’ The latter is downright wrong; it is an altogether unreasonable threat to confront the patient with. Patients with amyotrophic lateral sclerosis do not choke, as this word may suggest: a pinching around the throat or air hunger. They slide slowly across into a general stupor known as carbon dioxide narcosis and sleep due to the weakened lung function. Kees keeps a diary on his computer, which he can operate with one finger. At one point he writes: ‘How long can I keep putting my wife through this deferral of the decision?’ And he is deferring the decision. Several dates are fixed and then dropped again. I think it is meant to show that the decision is well-advised, but it will show what a desperate choice it is, and that Kees is not making such a free choice after all. His wife Antoinette is present a lot. She does most of the talking, as Kees speaks so slowly that no one can be bothered to wait. During one of the home visits, the doctor is met in the hallway by Antoinette. She says, almost ruefully: ‘So, anyway, he keeps putting it off!’ But finally, the date is fixed. It’s set to be Kees’s birthday on 3 March. He is set to complete the circle, which is feasible when you time the event yourself. The doctor has arrived now. Kees is sitting in his wheelchair drinking from a beaker through a straw. They talk about the long sleep that awaits him. At some point the doctor inches forward a little in his chair and I dare say also says something about it being just about time to … Yet it is Antoinette who exclaims testily: ‘Let him at least finish his drink first!’

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Shortly after, he wheels his chair into the bedroom. With Antoinette’s help he is put to bed. The doctor places the hypodermic needle in his arm, injects the sedative and Kees’s breathing becomes regular. He sleeps. Then the syringe is exchanged for another and, slightly absurdly, van Oijen carefully makes sure  – true to form  – that he first lets the air out of the syringe before injecting the lethal dose of poison. The breathing stops. The doctor asks Antoinette:  ‘Wasn’t that beautiful?’ She bears that out. And true enough, it is aesthetic and clinical, and yet so cruel. He also asks – and this must be for the sake of the film’s message – ‘Was it right?’ Antoinette nods and says yes, it’s right. The thought crosses one’s mind: What would the doctor do, I wonder, if she had exclaimed: ‘No, this suddenly strikes me as being all wrong!’ There is a fundamental difference between human and medical judgements, diagnoses and prognoses, which are more or less uncertain, and euthanasia, which is definitively certain – there is no possibility of regret or of undoing the deed here. --------------------------On the Nijmegen course in 2002 a number of participants pointed out that the doctor in the documentary was acting on the basis of his helplessness and ignorance of options other than euthanasia. Incidentally, the Dutch attendees told me that van Oijen, who had become almost world-famous as a result of the film, was convicted six years later of having euthanized an 82-year-old woman against her will, but because he regarded her condition as hopeless. He had used – so one of the counts reads – an ampoule of poison which is no longer recommended for the purpose but was in his jacket pocket, left

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over from a previous euthanasia. Furthermore, he had given the cause of death as ‘natural death’. Nevertheless, as with similar cases under Dutch jurisdiction, he got off without a sentence on the grounds that he had acted in the best interests of the patient.

Inherent problems of autonomy A person who uses his or her presumed right to self-determination to choose euthanasia or assisted suicide definitively precludes himself or herself from deciding or choosing anything. Where death is concerned, one’s right to self-determination can only be exerted by disposing of it for good. By one’s autonomy, in other words, one opts to no longer have autonomy. And those around must respect the right to self-determination. That respect refers to a person who is respected. But, as emphasized by the philosopher Jacob Birkler (2015), ‘this is precisely the person who disappears. We respect “you” by removing “you”. The respect for self-determination can thus be regarded as self-refuting.’ By analogy, freedom has historically excluded the right to voluntarily become another person’s slave. According to Callahan (1989), the philosopher John Stuart Mill puts it like this: ‘By selling himself for a slave a person abdicates his liberty; he forgoes any future use of it beyond that single act … The principle of freedom cannot require that he should be free not to be free. It is not freedom to be allowed to alienate his freedom.’ The historian of ideas Johannes Sløk – despite being a supporter of legalizing euthanasia – conceded that autonomous choice is not like

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other choices. He put forward the following consideration: ‘The actual concept of death has no content, for death is the same as nothing, and one cannot choose between life and nothing. Rather, therefore, one must speak of opting out; one opts out of life, without thereby choosing anything else. Death is not “something other” than life; it is the cessation or annihilation of life.’ --------------------------Autonomy is a consistent principle running through the care and management of patients and is enshrined in law. But this autonomy centres around the patient’s right to say no to an offer of treatment – and any offer of treatment whatsoever at that. It applies even if the treatment is life-saving; it could be a blood transfusion, for instance. It is presumed that the patient is adult and competent, or has legal capacity, as they say. In other words, legally a patient has an absolute right to refuse treatment, even if it were to cost him his life. It seems logical, therefore, that it must also be the patient’s supreme right to demand that he be relieved of his life. Why should the right to selfdetermination not apply in this key area  – the right to one’s own death? The answer apparently goes without saying, and it is this logic which is specious, and with which we are confronted (cf. p. 8). The autonomy of a patient means that he or she has the right to decline any treatment. But it does not entail a right to have any treatment the patient might wish for. Thus, the patient does not have the right to demand treatment that signifies another’s duty to fulfil that right. If that were so, autonomy would be the same as ‘autocracy’, which I  suppose translates as ‘rule of the self over others’. In other words, even though the patient has the right to reject any intervention

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on his or her body and soul, he or she does not have the right to demand any intervention on his or her body and soul. Rejecting any claim that the person might make is not a violation of a patient’s selfdetermination, therefore. There may, for example, be medical reasons for not complying with a demand. One way of expressing it is that the doctor also has autonomy, allowing him or her to say no. To be perfectly precise in this context:  As autonomy is defined, refusing to be willing to kill a person cannot be a violation of that person’s autonomy. An objection to this contention is that it is indeed not the patient’s right, in the sense that it is then the duty of the doctor. The wording of a law on euthanasia is envisaged as simply not making it illegal to comply with the patient’s wish to be euthanized. With such a law, it must be the individual doctor’s decision whether or not to accommodate the patient’s wish, but the law must guarantee the doctor inculpability if he or she does so. As stated above, the purported autonomy in connection with euthanasia is not equivalent to the legal concept of patients’ autonomy. More broadly, however, it is questionable whether individual autonomy, as it is generally understood, can be directive in favour of euthanasia. This will only be applicable if autonomy is defined, as mentioned, as autocracy. Euthanasia involves two people’s autonomy and by its very nature cannot be an individual action. It is different with suicide. Whereas suicide is something individual (private almost), euthanasia is an action that requires two people to make it possible – and for us to have a culture and a society that approve of it. Euthanasia, also including assisted suicide, differs from suicide in that, unlike suicide, it requires the doctor’s moral and physical help.

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It is a binding agreement between two people: the one who is to be killed and the one who is to kill. But our society does not condone killing as a relationship between two legally competent, consenting people otherwise. Those exceptions from the killing ban which are known involve states of war or self-defence and thus are not justified on the grounds that the killing is done for the ‘benefit’ of someone else but, conversely, that it may be necessary in order to protect oneself or others in self-defence or war, for example. At the same time, if the action is to be decriminalized, as some people wish, it means that the doctor will be forced to enter into deliberations and arguments for and against a request for euthanasia or assisted suicide each time, that is, whether he or she is willing to grant it. And that also means the doctor having to assess whether the patient’s life is worth preserving. As a doctor I  feel that, by advocating the idea of euthanasia, we will be plunged to an unreasonable degree into having to assess whether other people’s lives are so poor and unworthy that their life has to be terminated by means of active assistance. Dr. Katrine Sidenius, Danish physician and gynaecologist – 1946–2012. Member of the Danish Medical Association’s Ethics Committee. My second wife Thus, autonomy is not the only factor or the key factor when deciding whether euthanasia can be granted. In other words, it is not only the patient’s own evaluation that is crucial. The patient’s life-value is also required to be assessed as sufficiently low. A Dutch doctor who carried out euthanasia explained in a lecture that the preparations are very thorough indeed, and that he always spoke with the patient at

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length and repeatedly in order to convince himself that the patient’s request for euthanasia was meant genuinely. If he was unsure whether the patient meant it, he would reject the request. As he said, ‘I talk to the patient in some depth and ask probing questions. But I am not always satisfied with the patient’s answers!’ As a starting point, that is reassuring, but it also shows that the patient has a limited right to self-determination nevertheless; at any rate, he or she is subject to the doctor’s assessment and degree of satisfaction with the way they answer. A competent and legally capable person must have the option of voluntarily choosing euthanasia in the event of unbearable suffering, but why does the suffering have to be a requirement? Why should autonomy even be subject to this restriction? The answer is straightforward: Our concepts of euthanasia imply that compassion must form a crucial aspect of the decision about euthanasia – mercy killing and compassion killing are synonyms for euthanasia. But, as previously mentioned, that leads instantly onto the question of why euthanasia should not also be performable on people who are not in a position to ask for it themselves but are also suffering. Some people find the reasoning unproblematic. It stands to reason that relieving suffering is a duty after all. But in this particular context it is not unproblematic, because it effectively shifts the focus from the autonomy claimed. According to prevailing ideas about autonomy, patients initially evaluate their quality of life themselves, but ultimately it is those around them who end up gauging their quality of life and their life-value. That is to say that the justification for so-called voluntary euthanasia is borne on the premise that certain lives are not worth living rather than the presence of a request. In the

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process, respect for the right to self-determination becomes relative; the whole point is that self-determination is not fully respected. The British professor of medical law John Keown rightly stated in 2002: Consequently, the real, rather than the rhetorical justification for voluntary active euthanasia is not the patient’s autonomous request but the doctor’s judgment that the request is justified because death would benefit the patient. Another inherent problem with autonomy is that freedom of choice involves the basic problem of the patient not being exempt from having to choose. This has also been mentioned earlier. Any possibility contains compulsion; the actual act of choosing becomes compulsory. But it has an even wider significance, that is, that the possibility of euthanasia per se legitimizes and motivates euthanasia. Or put another way, the possibility of allegedly voluntary euthanasia entails an indirect obligation for vulnerable and dependent people to make that choice. In the US state of Oregon assisted suicide has been a possibility since 1997 (Chin et al. 1999). In 1998, 12 per cent of the patients in hospitals and care homes reported feeling like a burden to their relatives. One year after its introduction this figure rose to 26 per cent. In 2018 this figure had risen to 64 per cent (Oregon Public Health Division 2019). It is a trend that speaks volumes:  the possibility of assisted suicide leads to assisted suicide. The philosopher Knut Ruyter (1998) talks about the development of a ‘euthanasia mentality’ that characterizes the view of the sick, disabled and dependent held by those around them, and the view those people have of themselves. Benoit Beuselinck points out that

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‘euthanasia is rapidly becoming a normal way of dying (the so-called normalisation of euthanasia)’ (Beuselinck 2017). --------------------------Barbara Wagner had recurrent lung cancer and Randy Stroup had prostate cancer. Both were on Medicaid, the state’s health insurance plan for the poor. The state of Oregon denied both treatment but told them it would pay for their assisted suicide. ‘It dropped my chin to the floor,’ Stroup told the media. ‘How could they not pay for medication that would help my life, and yet offer to pay to end my life?’ US lawyer Wesley Smith refers to this example in a column in The Telegraph in 2009 under the heading ‘Right to die’ can become ‘duty to die’: According to Oregon’s legislation, assisted suicide can be performed when special conditions have been met. Of the case in point Wesley says: ‘Imagine that you have a lung cancer. It has been in remission, but tests show the cancer has returned and is likely to be terminal. Still, there is some hope. Chemotherapy could extend your life, if not save it. You ask to begin treatment. But you soon receive more devastating news. A letter from the government informs you that the cost of chemotherapy is deemed an unjustified expense for the limited extra time it would provide. However, the government is not without compassion. You are informed that whenever you are ready, it will gladly pay for your assisted suicide.’ Wesley makes it plain that the state of Oregon has not yet proved that its assisted suicide law (the Death with Dignity Act) can be adhered to without misuse. ‘But the more one learns about

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the actual experience, the shakier such insurances become,’ he says. The rationale for introducing assisted suicide in Oregon was that it provided an option for managing the most severe pain and suffering which there was no other way of treating, but it turns out that the service is being offered to patients who do not yet have pain symptoms, in many cases those patients who feel they have become a burden to their relatives. Those patients suffering from depression and other mental illnesses have also received ‘help’ without having tried any other treatment in some cases. Wesley ends his piece with the words: ‘For those who dig beneath the sloganeering and feel-good propaganda, it becomes clear that legalizing assisted suicide leads to abandonment, bad medical practice and a disregard for the importance of patients’ lives’. --------------------------There are other examples of the detrimental effects of making assisted dying possible. In 2015 the Supreme Court of Canada ruled that medically assisted dying should no longer be prohibited (Supreme Court of Canada 2015). There are now thoughts of further expanding the law to make assisted death available to people who are not terminally ill (BBC News 2020). Patients with neurological disorders and extensive needs for help have requested support but have instead been offered assisted dying (Favaro and St Philip 2019; Saba 2019). In an open letter to the Canadian Minister of Health a group of doctors have claimed that lack of economic resources in palliative treatment has forced patients to ask for physician-assisted suicide (Wallace and Parent 2019). The UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas Aguilar, has sharply criticized the

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influence that the legalization on assisted dying has had of the life of handicapped people (Devandas Aguilar 2019).

Autonomy versus paternalism The ideology of self-determination is acknowledged in our age, whereas paternalism is denounced. The euthanasia option is persistently said to be respect for self-determination, whereas not wanting to give people such an option is a reflection of paternalism. That is how it is described, but in reality, it can be exactly the other way around. A  Norwegian survey of doctors’ attitudes towards euthanasia showed that those doctors who took the most positive view of euthanasia were otherwise most paternalistically minded (Førde, Aasland and Falkum 1997). It may seem like a paradox, since autonomy is precisely the thing which is purportedly safeguarded by the right to euthanasia. But the paradox is only an apparent one, surely, as the motive for giving the patient the option of choosing euthanasia – or perhaps encouraging the patient to do so – can be an honest but also a paternalistic conviction that being given the choice to be put to death is best for the person. It may not be such a large leap between the individual taking control of his or her own death and society taking control of the death as such. If an individual can decide that life is not worth living, then society can also decide that the lives of some citizens are not worth living. As will be seen in Chapter 8, signs of this development are now emerging. The Netherlands has seen an even more paternalistic aspect of the debate that euthanasia should also be able to be performed without any request on the part of the patient. One of the arguments put forward

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was that having to take a stance on euthanasia could be a strain on the patient. It would be more merciful to do it without letting the patient in on the decision, given that it was in the patient’s best interest. The final remnants of autonomy would vanish in the process. Secret euthanasia has been called cryptothanasia. The prefix ‘crypto-’ comes from the Greek kryptos, meaning hidden. Anonymous studies have shown that an unknown number of cases of euthanasia – about 20 per cent  – are not reported  – a dark figure. In Flanders in Belgium it is estimated that there is around 50 per cent underreporting (Montero 2017). The figures are interesting in themselves since one of the arguments for introducing the law in the Netherlands was originally to create complete openness in the area. ‘Hidden’ euthanasia is undoubtedly performed with reference to the fact that it is in the patient’s best interest. Obviously, that concept is highly elastic and could also, for example, conceivably ease the passage and legitimization of euthanasia of mentally disabled, severely handicapped and demented people and thus lead to a change in culture, which the lesson of history ought to warn against too. Having commented on a number of examples of euthanasia in the Netherlands, Dr. Richard Fenigsen concluded back in 1989:  ‘Those who contend that it is possible to accept and practise “voluntary” euthanasia, and not allow involuntary, totally disregard the Dutch reality.’ An opinion poll conducted some years ago in Denmark showed that in this country, too, some people hold the view that euthanasia should be performable without a request, when there are otherwise good grounds. Such an opinion poll, incidentally, has no room to elaborate on who should define what constitutes good grounds: the relatives, the staff or the politicians?

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6 Rational versus irrational thinking

Katrine and I  knew each other from our student days. We had qualified as doctors in the summer of the same year, 1972. We were married in December 2009. At that point she was on dialysis due to a kidney disorder. The following experience with her will serve to illustrate that people do not make far-reaching decisions regardless. Existential decisions  – literally decisions about our existence – are not independent of the relations we have, whether they be close relations or relations with those around us generally. Katrine’s natural brown complexion had become sallow, as seen in patients with chronic kidney failure; a greyish tint, as though her suntan had been topped with a layer of ash dust. The dialysis sessions were gruelling, but vital, and had become necessary every other day. Four or five hours’ dialysis, a break the following day, then again. As the time for dialysis approached, the accumulation of fluids started to torment her. Her breathing became laboured, and she had pressure across the chest.

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Then there was the transport to the ward. The waiting time. The tortuous hooking-up to the machinery. The many hours tied to the couch. She was able to talk to the staff and to her fellow patients, each lying there with their own machine, and nap a little; but there were endless disruptions, among other things from the recurrent howling and bells  – alarms that went off from now one machine, now another. There was nothing the matter with the monitoring, and the threshold had been set low, just to be on the safe side. Yet she was vulnerable. One time, she had been left sitting on the edge of the bed for a moment while the nurse adjusted the device on the other side. She had fainted with no prior warning and found herself lying on the floor being helped to her feet by a shocked dialysis assistant. ‘I was sure you could sit for a while!’ – ‘I thought so too,’ she replied. There were knocks, but most importantly – and luckily: the dialysis catheter had not been yanked out. It had been inserted into the large veins in the chest cavity via a vein in the neck. The catheter was her lifeline and positioning it correctly had been difficult. She was capable of reading a little but reading aloud was best. TV was unbearable, what with all the jaunty figures among the announcers and actors. For many hours immediately after dialysis, she was extremely tired owing to the body’s reaction to the volumes of fluid that were being ‘moved’ and cleaned, and to the rapid reduction in the body’s volume of fluid. After that there were a few hours of being more or less comfortable, unless she felt queasy or had a headache. You might call it an oasis of comfort between dialyses. The fear of the next dialysis was gradually superseded by a longing for it, due to the mounting fluid pressure, with shortness of breath and strain on the heart.

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One time, it nearly all went wrong. I got her to the dialysis ward in the nick of time. She had pulmonary oedema and had started to fade away. The paramedics wanted to drive her over to a local hospital, as all emergency patients have to be assessed there first. I  insisted on the dialysis ward at the Copenhagen University Hospital, because dialysis was what was needed. After some short phone calls, they consented. An emergency dialysis slot was found, and we made it. Afterwards she said: ‘I would have preferred to die in your arms though.’ Katrine was an enormously spirited person. Such spirits have helped many people through the ages as well as herself. Most recently her fellow patients received help and support, and a formidable advocate in the form of Katrine. For example, when they themselves were unable to formulate their opposition to some outrage that might be half-hidden behind a load of benign talk about rules and opportunities. But even she could break. She cried at night in her hospital bed  – out of loneliness, exhaustion and privation. She yearned so badly for normal days without pain and nausea, but they were few and far between. And there was an overwhelming certainty that there was no prospect of recovery. ‘I know what I can do,’ she said one day; ‘I’ve been thinking it over. Want to hear?’ I nod cautiously. Her eyes come to rest on me. She is serious. ‘Well, one night I’m going to open up my dialysis catheter. It’s quite possible; they don’t watch me so much at night time. The blood will slowly drip out. Because of the anti-coagulation therapy, it won’t stop. I’ll slowly fall asleep … No, no – when you look at me like that, I won’t do it.’

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Katrine was thinking of taking her own life for her own sake and refrained from it for mine; or perhaps for her own sake too. Did she tell me about it to find the courage to carry on living? Because I believe it gave her strength that, despite pain and misery, there was something to live for. No, I know so, because another time she said so straight out: ‘If you weren’t there, I couldn’t stand it any longer’. It is a declaration of love that breaks your heart while also warming it. But I must consider, coolly and rationally, whether I was being selfish in my desire to hang on to her – almost demanding that she should get through it all for as long as possible and at any cost. Is it OK to dread planning to lose the one we love? Yes, if it was only rational and cool, the answer would be: No, I suppose it is not OK. It is selfish, for the brain may soon think and our speech soon articulate that she would indeed have been better off being rid of her irksome constitution and body. But the language of the heart cannot find those words, it can only express unutterable sorrow at the thought of being separated from its loved one. In that way love is selfish; for love cannot choose to be rational. Love can only choose one thing, and that is love. But if it is selfishness, she does not see it thus. Somewhere she needs my dismay: ‘No, when you look at me like that, I won’t do it!’ --------------------------It is strange that, in this world which ‘lieth in wickedness’, that kind of selfishness can turn into a declaration of love. I myself have been warmed by encountering that ‘selfishness’ from the one I love. When I heard Katrine say, ‘Your being here is good for me. It’s good that you call,’ well, it literally makes me feel sincerely good when the one I love

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wishes to be together with me. Self-centred and self-referentially sensitive in a way, but with the message:  you and being in your presence in particular is what means something to me. It is a banal fact that human thinking is not only rational but also irrational or emotional. We express irrational thoughts and expect to be understood by our fellow human beings. ‘You are the most beautiful person in the world!’ may not be true in a rational sense. But taking reservations will convey a false message. For example, ‘You are the third most beautiful person in the world’ will not be accepted as a sincere statement. Although it is a distinguished place, the receiver of the message will not be satisfied. Two languages are available to us, the heart’s language and the brain’s language or an irrational and a rational language, and part of these may not even be verbal. And sometimes we use both languages at the same time. A very important part of our existence can only be understood at all irrationally (emotionally), perhaps. Something as illogical as a paradox can be understood. You see, a paradox is a logical selfcontradiction, but is understood nonetheless, because it makes sense elsewhere. The unfathomable can be fathomed – not with the brain but with the heart. I am fond of the following paradox: ‘Only because I have you can I cope with the problems you invariably cause!’ It is an absurd sentence and a declaration of love. Among others, moral philosophers can rationally argue that suffering defined as unbearable must be ended and that selfdetermination must be respected. It may be difficult to disagree when using the brain’s language. I have, however, recounted the verbal exchange with Katrine because she taught me something here. The conversation with her emphasizes

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that no serious decisions are taken ‘regardless’, that is, no decisions can be divorced from the relations we have. In particular, though, she also taught me that a desperate person – it may be one of those closest to us but can also be a less familiar person, a patient for ­example – may need to be met with more than just a logical understanding that it is best to go to one’s rest now. Thus, a patient may already feel redundant when he or she makes a rational request for assisted dying, but this feeling of redundancy can be reinforced when he or she is met with a rational understanding that this would be the best option. Would the rational approach include a form of abandonment or even repudiation? Winter 2012 saw the onset of complications to Katrine’s kidney disease in the form of ischaemic leg ulcers, which were very painful. After every dialysis the pain increased. The morphine, which was necessary, was partly excreted during the dialysis, which was also necessary. During the final period she was hospitalized at the Copenhagen Wound Healing Centre in Bispebjerg, which looked after and cared for her, interrupted by trips to the University Hospital’s dialysis ward every other day. On Saturday 29 April, when I  visited, the nurse came over to her: ‘What you enquired about this morning is perfectly feasible.’ Katrine looked at me delightedly: ‘I’ve asked if you’re allowed to sleep over in the patients’ room.’ There was room, because the bed adjacent was empty. Here the staff displayed a discretion for which I  am grateful. I  was able to stay there the next night too, before I had to get back to work in Jutland, as planned, early on Monday morning. On Sunday evening I helped her wash her hair. We said good night. I checked on her at around three, and she was sleeping

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with good, regular breathing. At four I checked on her again. By then her heart had stopped. Katrine had timed it to a tee. I  had been allowed to be with her on that last evening and night and had kissed her good-night for the last time. She was very ill, yet it felt so overwhelmingly sudden: That allof-a-sudden homeless love. We are given life when we enter this world. Be the race short, be it long, it is true to say that once given life, we start to lose it  – day by day. We know it only too well, and people have always known it. We are given life, and with life come joys, sorrows and opportunities. We are placed in a setting, we become part of a larger or smaller community. Perhaps we get someone we love; perhaps a spouse, children and friends. Invaluable gifts that accompany life. But it is a condition of life that we lose. We lose throughout our lives. We gradually lose our senses, lose our mobility perhaps, our health, our powers of reasoning. We lose organs and organ functions, lose control of our vital functions and lose our loved ones. With life, we also get vulnerability, therefore. It is a basic condition. The poet Ludvig Bødtcher wrote a poem in 1865 entitled ‘On a Loss’ to a Mrs. Frederikke Leth on news of her son’s, Hannibal Leth’s, death: Whate’er we love we own on hock until the morrow, On borrowed time, as is the natural order, And if you wish to rid yourself of want and sorrow, Then you must love nothing here on earth; But sorrow is the dark hand of an angel, Cleansing objects of fondness with their worldly worth,

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Raising our spirit towards the Eternal – And that is why you must love here on earth. Sorrow is a sine qua non of love, and vice versa. The aphorism is ‘It is better to have loved and lost than never to have loved at all.’ There is even a touch of logic to it. But when we encounter existentially great and monumental events in life, we do not resort to logic; having something explained that defies explanation and understanding anyway is of no help. Why do we enter the world? Why must we die, and why must our loved ones die? When our children ask us, we can ill answer them, because we are just as ignorant as them. Here we resort to poetry, to tales and to myths. The account of creation, the myth about the stork, Astrid Lindgren’s ‘The Brothers Lionheart’, Hans Christian Andersen’s ‘The Story of a Mother’. The context of ‘Sorrow and joy walk hand in hand’ (from the hymn Sorrig og glæde de vandrer til hobe by a famous seventeenthcentury Danish hymn writer, Thomas Kingo) is a true context, a complementarity, a fact, which can be ascertained. A logical context – again. But does it comfort the one grieving over a loss? Hardly. Yes, sorrow is called homeless love; for deep sorrow is not being able to give your love in the right place, that is, to the one who is missed. The irreparably missed one. What comfort is that? None. It has been described by the paradox: ‘The comfort is that there is no comfort.’ But yes, that is the comfort, for if there were comfort, at the same time it would mean that the loss was fathomable and manageable, and that would immediately make the loss less than it is. And it is not so; it is precisely so unfathomably great as to be unmanageable; and it is a singular joy that it is so.

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The English writer Julian Barnes says in the book Levels of Life from 2013, where he describes the loss of his wife: ‘Nature is so exact, it hurts exactly as much as it is worth, so in a way one relishes the pain. If it didn’t matter, it wouldn’t matter.’

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7 The doctor–patient relationship

As described above, we make use of both rational and irrational languages, and this is important for the communication between the doctor and the patient. In a country with legalized euthanasia, the message is as follows:  You are requesting your own death. That is understandable; you have an unbearable condition, and we cannot do that much more. But you must consider your request carefully. I will return to hear whether you still mean it. (According to the rules the request must be sustained.) I  also need to run it past a colleague before we can proceed with such action. (An impartial colleague must be consulted in order to be involved in establishing that the situation is hopeless and that the patient means what he or she says.) The reply, therefore, is based on a well-intentioned and rational evaluation of what best serves the patient. But at the same time – and less intentionally – the reply will include: ‘We can help you from here on out, because you are altogether dispensable, and disposable, paltry

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as you are.’ Barely anyone speaks with such outright callousness, but what does the patient hear in that resolute offer of euthanasia in the midst of his or her wretchedness? In a country with a sustained ban on euthanasia the message might read as follows:  ‘You are requesting your own death. That is understandable, because you find yourself in a terrible predicament. We will do whatever we can for you, and we will also be with you now that things are so bad.’ The patient will repeat his or her wish to die perhaps, but the final barrier in law need not, as is sometimes claimed by rational minds, be merciless; rather, it can be an undertaking that we dare to be with the patient in their and our powerlessness, and that they must remain part of the community – that is, this life. It is important for the doctor to remain on the side of life when asked to help. It sounds a little pompous, but to bring things back down to earth, the doctor dares to be with the patient when things really take a turn for the worse without having some other agenda in the mix. The Hippocratic principle mentioned in the introduction means:  ‘I will not kill you. Please understand that this means you will be safe under my care. You can trust me.’ In our days, the philosopher Emmanuel Levinas argues that before the Face of the Other, the ethically aware person is compelled to attend to the cry of the primordial imperative of all ethical responsibility, ‘Do not kill me’. A doctor employed at a Danish hospice told me that a patient might well ask him to put an end to his miserable existence, but when he replied that he was not allowed to kill, the patient slumped back onto his pillow with relief and asked, ‘So what can you do for me then?’ How can the patient find it reassuring that the doctor is not allowed to provide the euthanasia requested, that is, to deprive one of life?

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That the doctor has not been granted the powers to allow him to kill the patient? As mentioned above, I believe that it has to do with the fact that an undertaking to euthanize – despite being advocated by all rationality – indirectly becomes at the same time an abandonment or repudiation of the patient (Heath and Hartling 2020). Thus, the dialogue conducted when the doctor remains with the patient on the side of life originates from a different source than a scenario in which the doctor can also be the one to take the patient’s life. It is my conviction that if the doctor who is the one to alleviate suffering is also the one to take life and/or help with dying, it invariably will influence the patient–doctor relationship. It is an often-heard statement that the opening of an assisted dying option makes possible a better discussion of the approaching end (Wilson et al. 2007). But when the patient and the doctor speak openly about the wishes of the patient, the doctor is left with a choice: should he or she improve hope and life or should he or she support the patient in the patient’s giving up? If it be accepted as a normal part of the doctor’s job to help the patient give up, it can influence that relationship. The patient may well falter between suicide and hope and will lose the doctor as an unambiguous ally with life and hope. If assisted dying is legalized it may influence the patient’s own participation in the relationship. Should a doctor not be willing to assist a patient’s suicide, the patient can still get it elsewhere (if it were legalized), and the patient is suddenly gone – dead. The certainty of this possibility can influence the doctor’s unconscious investment in the relationship, or even be seen as a type of competition, where the doctor who remains on ‘the side of life’ has to outdo the ‘assisted

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dying colleague’ as the one who is the best helper of the patient. I – as a doctor – want to remain the one who stands for hope, mitigation, relief of suffering and not being overcome by the patient’s feeling of hopelessness. It may be a help for both doctor and patient that the law still establishes a barrier. ‘Euthanasia does not just change medicine or extend its range; euthanasia replaces medicine,’ Richard Fenigsen (1989) wrote. ‘A generation of doctors is being raised who learn that a doctor may treat a patient or, sometimes, kill him.’ That undermines the doctor– patient relationship, which is based on a certainty that the doctor will do whatever is within his or her power for the patient and never deliberately do anything to harm the patient; that assurance is vanishing. Patients will be able to sense  – and perhaps even be anxious – that the doctor who is prepared to put them to death when they so wish will also be able to do so without them wishing it. But in principle patients have been safe in doctors’ hands, in the sense that doctors did not have death in view. The Belgian oncologist Beuselinck (2017) adheres to a similar point of view: ‘The pressure on doctors also increases due to communication with slogans. If euthanasia is defined as “dying with dignity”, doctors who do not perform euthanasia are implicitly labelled as inhumane.’ Some Dutch general practitioners regularly receive requests for euthanasia; others are never asked by their patients, even though they have the same kinds of patients. How can that be? It suggests that even the very doctor–patient relationship – with demeanour, view, attitude, body language and so on – is a co-determinant of this so-called free choice. Some doctors have also been reported to provide an offer of euthanasia, unsolicited, when considered opportune; or relatives

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and friends have expressed surprise that the sick person has not yet requested euthanasia. This can presumably be subsumed under the expression ‘a euthanasia mentality’ or ‘normalisation of euthanasia’, making it harder to resist offers and pressure because, directly or indirectly, the message conveyed to the sick person is that it is undignified to be hurting, to be troubled, dependent and weary of life. The mere prompting for euthanasia sensed by the sick person can contribute to the feeling of being superfluous. The actual request of assisted dying is very rare in Denmark, even on hospital wards  – and far rarer than is circulated abroad in the media. The top doctor, Bente Sørensen, at the oncology department of the hospital where I am employed told me that, in her long-standing career, only extremely seldom, if ever, had she met patients who had raised the question of euthanasia. ‘It’s simply not an issue in our case,’ she said. This has since been corroborated by oncologists at other Danish departments. Danish legislation also offers some protection – that is one way of looking at it. If the notion that euthanasia is a possibility ever lodges in patients’ and doctors’ consciousness, it will also become a consideration along the therapeutic pathway for patient and doctor alike. What spoken and unspoken agendas will arise then? Is the doctor the patient’s advocate and helper in life, or will they be the one empowered to kill the patient, provided certain conditions are met  – conditions not necessarily determined by the patient alone? Will hidden motives potentially lurk beneath the white coat? The doctor’s role becomes ambiguous, for both the patient and the doctor themselves. The conclusion is that euthanasia is not medical practice. Performing euthanasia can also be a heavy burden on the doctor (Kelly et al. 2019). It is tantamount

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to asking a fireman to start a fire, as one of my colleagues said. The renowned American surgeon and author Atul Gawande in his book Being Mortal from 2014 expressed his concern: ‘I fear what happens when we expand the terrain of medical practice to include actively assisting people with speeding their death. I am less worried about the abuse of these powers than I am about dependence on them.’ Australia’s Northern Territory had legislation on euthanasia from 1996 to 1997 (cf. p. 26). Implementing it ran into many difficulties in practice. The federal government repealed the Rights of the Terminally Ill Act after a short time (Collins and Brennan 1997). I home in on the fact that one of the more serious reasons for repealing the law was that it had created concern among the original population, the Aboriginal people. They are already sceptical towards modern medicine, but they now began seriously to doubt the doctors’ remit. I once asked a Dutch doctor whether he had performed euthanasia. He had, a number of times – ‘but’, he added, ‘there was one time when I  declined to do so on a particular day the patient had requested, because it was my daughter’s birthday.’ I think that what he was getting at was that it was not just a matter done to order, and how seriously he took it. But at the same time, he also managed to express that the good deed which euthanasia is claimed to be cannot be carried out on a red-letter day in the doctor’s life. Or to put it more solemnly, he unconsciously refused to take life on a day when life had entered his own family. If it can rationally be argued that euthanasia is the right thing to do, that it is good medical practice, would this good deed not be an excellent thing to do on a festive occasion such as a birthday too? The doctor’s rationale for rejecting euthanasia on his daughter’s birthday is not rational at all, and it indicates how barrier-breaking

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euthanasia is or how ‘taboo-breaking’ it is. Intellectually and rationally, we may possibly convince ourselves that this is a humane and proper action but making death  – which is otherwise a destiny  – into an option presumably comes at some costs that cannot be considered within an intellectual purview. A Dutch woman relates that her family doctor had prepared to euthanize her 37-year-old spouse, who had leukaemia. A colleague had been involved in the decision, the paperwork completed, and the medicine procured. The day had been fixed. In the morning the doctor had accidentally cycled up alongside the family’s 12-yearold daughter on her way to school. On seeing her now, he said he supposed she must know full well that her father was very sick and that he might be going to die that same day. It was presumably an expression of his caring nature that he wanted to prepare her a little for the event. Later that morning, after the younger sister had also got to school, the doctor performed euthanasia on the father. Six years later the mother still found herself unable to tell the children how the father died. So, she had still not been able to recount this humane action; and that is odd, basically, given the ease of persuading oneself how right it is. What is more, the children had even been afraid of the family doctor for a number of years after, perhaps because he possessed the tremendous power of being able to predict death with precision. Not infrequently, illustrations accompanying debate contributions about euthanasia show a hand guiding a syringe with a needle. And that matches most people’s expectation that it has to take place with the injection of a lethal dose of medicine. Polemically, I have asked

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whether it could not also be done with a stunbolt gun or in some other efficient manner. People shudder – and rightly so. It would not be aesthetic or clinical either. Yes, clinical, because that image conforms to another expectation, namely that a doctor must be the one to perform the euthanasia. Doctors know about medicine and can handle syringes and needles. But it is by no means a given that doctors must be the ones to do it. On the contrary. The World Medical Association (WMA) is entirely unequivocal about this. In 1987 it formulated a resolution on euthanasia, which reads, ‘Euthanasia, that is the act of deliberately ending the life of a patient, even at the patient’s own request or at the request of close relatives, is unethical. This does not prevent the physician from respecting the desire of a patient to allow the natural process of death to follow its course in the terminal phase of sickness.’ In a parallel resolution the WMA also condemns physicianassisted suicide:  Physician-assisted suicide, like euthanasia, is unethical and must be condemned by the medical profession. Where the assistance of the physician is intentionally and deliberately directed at enabling an individual to end his or her own life, the physician acts unethically. However, the right to decline medical treatment is a basic right of the patient and the physician does not act unethically even if respecting such a wish results in the death of the patient. The resolutions were reaffirmed by the WMA in 2005 and again in 2013.

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Despite this, I suppose, most non-physicians think that if a law is made on euthanasia, doctors will be the ones to oversee it. But one way of pursuing that avenue of thought, for example, is that if it is doctor’s work, it should also be quality-assured, as they say. Then procedural and methodological instructions have to be drawn up. Doses of sedative and poison – for example, per kilo of body weight – should be indicated. And I suppose it should also say, as it usually does, that the skin has to be disinfected before administering the injection. That is done in order to avoid bacteria getting into the bloodstream. It is to protect the patient. Suddenly you realize it makes no odds, since you are not in the process of protecting the patient, you are in the process of something altogether different. Some years ago, a man appeared in the media and announced that he wished for help to die. We have seen it before, and also since. Newspapers and weeklies shamelessly translated the tragic into the pathetic – as often before. The man lived in a care home and had difficulty walking. He could not recognize himself at all, being thrown back on the help of others. He had been a travelling salesman, a self-starter who was used to a busy life, travelling around and being in control. What he was now experiencing was a restricted life, in which he felt redundant. His daughter had bluntly stated that active euthanasia was the only proper thing for him, seeing as this was what he now wanted. In a radio programme I took part in, she said: ‘My father has had a great life, but now he is no longer needed. I  think the doctors are letting him down. They may possibly have saved his life over

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the years, but now they’re refusing to do for him what he needs most, deep down, which is to help him exit this world in a dignified manner.’ I asked her whether she herself might not want to do it. ‘Oh, no,’ she said, ‘it’s not legal, you know.’ – ‘But if it were legal and went unpunished …?’  – ‘No, that’s up to the doctors to take care of!’ I persisted and informed her that it wasn’t hard, technically. But no, it wasn’t her job. I pressed home the point even further: ‘So if it really is the good deed, the act of love it’s claimed to be, isn’t the most proper thing for the nearest and dearest  – those who care most – to do it?’ No, it had to be the doctors, she insisted. Most doctors do not want euthanasia to be part of the physician’s work. On the odd occasion I  meet a doctor who is an adherent of euthanasia, my initial reaction is surprise. Can any doctor who really knows about such concepts, who has been educated and trained, and who has gained experience through their work be so simplistic? They are indeed a rare breed, if so. Some years ago, in England several thousand doctors were asked the same question we are familiar with from other opinion polls on euthanasia (see p.  20). Only a small percentage were in favour of euthanasia, and that is in stark contrast to the response rates otherwise achieved when the question is put to the general population. Generally speaking, doctors have no desire whatsoever to be saddled with the duty or endowed with the powers implied by a law on euthanasia. In 2013, the UK Royal College of General Practitioners (RCGP) ran a consultation with a questionnaire comprised of free-text questions designed to gauge GPs’ attitudes and views. Of the 234 members who

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submitted their responses 180 (77 per cent) indicated that they felt the College should maintain its opposition to a legalization of assisted dying; 42 wished to see the College move to a position of neutrality, and 12 were in favour of a change in the law (Royal College of General Practitioners 2020). In February 2020, the RCGP performed an all-member consultation. The response rate was low (6,674 out of 49,539 members). A total of 47 per cent voted that the RCGP should oppose a change in the law on assisted dying, while 40 per cent voted that the RCGP should support a change in the law, provided that there was a regulatory framework and appropriate safeguarding processes put in place. Eleven per cent suggested that the RCGP should be neutral on the subject, and 2 per cent wished to abstain. This showed an increase in responses favouring a change in the law, but the results of the 2013 and the 2020 consultations cannot be accurately compared due to different survey methodologies (Royal College of General Practitioners 2020). In concluding the 2020 consultation the RCGP Council voted by forty-four members that the College should continue to oppose a change in the law. Thirteen members voted that the College should not continue to oppose a change in the law, and five members abstained. The Council also decided that it would not review the College’s position on this issue for at least five years unless there were significant developments (Royal College of General Practitioners 2020). Likewise, in February 2020 the British Medical Association (BMA) conducted a survey among its 150,000 members on assisted dying and euthanasia described as ‘prescribing lethal drugs’ and ‘administering lethal drugs’ (BMA 2020). The response rate was low (19.35 per cent). As with previous surveys the results were ambiguous. Forty per cent

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of responders agreed that the BMA should support a change in the law regarding assisted dying, 33 per cent were opposed, 21 per cent adopted a neutral position and 6 per cent were undecided. On the question of euthanasia, 30 per cent favoured that the BMA should support a law change, 40 per cent were opposed to the idea, 23 per cent were neutral and 7 per cent were undecided. --------------------------I have observed that as a rule  – almost unconsciously, it seems  – Danish doctors distance themselves so vehemently from such ideas about euthanasia that they generally do not even stray into the arena of the debate. It is not a mindset that necessarily remains unconscious, for when asked straight out, doctors are just against it as the practice of medicine but saying so adds little to the debate. As a rule, the debate is instigated by debaters outside the doctors’ ranks, and they then say that doctors are not in step with the population, since the newspapers’ opinion polls show that the population wants doctors to perform euthanasia after all (Davis 2018). I once read a proposal from a Canadian professor of medicine, ethics and law, Carl Elliott, that the task should be performed by those moral philosophers who like to think and argue that euthanasia is the right thing (Elliott 1996). It was polemic, of course, but not without its merits: ‘When a majority of the public and philosophers support euthanasia and assisted suicide but doctors do not, there is a clear solution:  let philosophers do the job. Legislation should authorize philosophers to perform euthanasia and assisted suicide. Lethal injection is a technically uncomplicated procedure that philosophers could easily learn to perform’ (Elliott 1996).

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He mentions that doctors’ aversion is well known:  It would contravene professional oaths and codes of ethics, violating the moral norms of a long professional history; it would damage the relationship between doctors and patients, casting doubts in the minds of patients about the goals of life and health to which their doctors are committed; and it would be a step down a slippery slope leading to morally objectionable forms of euthanasia, such as involuntary euthanasia for the disabled. But philosopher-assisted suicide and euthanasia would avoid all these problems. Philosophers have no professional oaths and codes, and they are unencumbered by the traditions that seem to make many doctors reluctant to perform euthanasia. Nor is there usually a relationship between philosophers and patients that a policy of euthanasia might damage. (Elliott 1996) He highlights his point by adding, Some philosophers, like many doctors, will naturally worry about the way philosophers will come to be seen if they are given the authority to participate in euthanasia. But this worry presumes that euthanasia is an ethically objectionable intervention. If euthanasia is genuinely praiseworthy from an ethical point of view, carrying it out should reflect well on philosophy and will only enhance the philosopher’s professional reputation. … As many philosophers also realize, there is a difference between thinking it best that something should happen and thinking that you should do it  – between thinking that it would be best if a person were to die and thinking that you ought to kill him or her. (Elliott 1996)

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Even more wryly it has been suggested that ‘philosophical killing’ ‘would make a good masters degree for graduate philosophers with a practical bent: MA in applied philosophical killing’ (Daniel Albert quoted by Davies 2002). I have presented the proposal to philosophers who have otherwise advocated the legalization of euthanasia, but they would rather not consider it. In Dostoyevsky’s ‘Crime and Punishment’ the protagonist, Rodion Raskolnikov, gradually argues his way to the conclusion that he must be allowed to kill the evil pawnbroker, Aljona Ivánovna. The rightness of removing this brute must give him that right to act. Raskolnikov is partly inspired by a conversation he happens to overhear between an officer and a student playing billiards in a pub. During a break in the game the student holds forth on what a wicked and odious person this female pawnbroker is, and now the officer says: • ‘Of course, she does not deserve to live,’ remarked the officer, ‘but there it is, it’s nature.’ • ‘Oh, well, brother, but we have to correct and direct nature, and, but for that, we should drown in an ocean of prejudice. But for that, there would never have been a single great man. They talk of duty, conscience – I don’t want to say anything against duty and conscience; – but the point is, what do we mean by them? Stay, I have another question to ask you. Listen!’

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• ‘No, you stay, I’ll ask you a question. Listen!’ • ‘Well?’ • ‘You are talking and speechifying away, but tell me, would you kill the old woman yourself?’ • ‘Of course not! I was only arguing the justice of it … It’s nothing to do with me …’ • ‘But I think, if you would not do it yourself, there’s no justice about it … Let us have another game!’

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8 The slippery slope

An act becomes a habit, which becomes a character, which becomes a destiny. ARISTOTLE

Aristotle’s aphorism can be given a more contemporary formulation when it comes to assisted dying: the more an act is performed, the more it will tend to be justified. It’s simple psychology. Why, I wonder, are ever more dependent people qualifying for active euthanasia in Belgium and the Netherlands? It is a natural consequence of the same psychological mechanism. The more we perform a particular action, for example, euthanasia, the more we justify the fact that those people have nothing to live for. The more we justify that people have nothing to live for, the more people will eventually have nothing to live for. The more people who have nothing to live for, the more recipients of euthanasia. Over the years, opponents of legalizing euthanasia have warned, ‘It will be a slippery slope.’ A slippery slope means that, having once agreed to something, it will later lead to having to accept something that was not wanted from the beginning. It has become an argument

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in the debate, of course, for the very reason that slippery slopes are not unknown. A number of years ago forty-nine patients were killed at a care home in Vienna (Modest 1989). Five nurses confessed that they had begun with those patients who were ‘hopelessly ill’. In the course of several years chronically ill but difficult patients were also killed off. The step from life weighing heavily and onerously on the patient to the patient weighing heavily and onerously on their surroundings had become shorter by degrees. Over the years there have been similar cases in other countries as well. Mercy killing can turn into convenience killing, as one English hospice doctor put it (Ramsay 1994). The mechanism of the slippery slope is not alien to people. Conventional wisdom describes it with the words, ‘Give someone an inch, and they’ll take a mile.’ This is known as the slippery slope argument, and it is also met with in the debate on euthanasia. Thus, opponents of legalizing euthanasia say that once a chink in the law has been made and patients can be killed under certain conditions, it opens the way for misuse, because the assessment as to whether the conditions have been met will be subject to judgement, and because there can be shifts in motives. On this the House of Lords [select committee] said back in 1994, ‘to create an exception to the general prohibition of intentional killing would inevitably open the way to its further erosion whether by design, by inadvertence, or by the human tendency to test the limits of any regulation’ (Lancet Editorial 1994). The statement is supported by contemporary observers: ‘There is an indication that euthanasia, once the barrier of legalisation is passed, tends to develop a dynamic

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of its own and extend beyond the agreed restrictions, in spite of earlier explicit reassurances that this would not happen – in Belgium such reassurances were given when the 2002 law was being debated’ (Mackellar 2017). A fundamental objection to the use of the slippery slope argument is that it is based on how badly things can possibly go wrong, with no certain knowledge. That is to say, any development is pressed into the service of one’s own point of view; or to put it another way, something is rejected by referring to a situation that is worse than the one which should actually be decided here and now. However, there are two essential reasons why the slippery slope argument cannot be rejected when it comes to euthanasia. The first is that the slippery slope follows naturally – almost logically – from the nature of the beast:  The aim of euthanasia is well-intentioned, for suffering must be combated. It will be hard to place limits on benevolence. Who is going to limit benevolence, and all that is wellmeant? Any attempt to do so can be regarded almost as a reflection of malice. It is worth considering whether the real subject still being constantly discussed in the context of euthanasia is the eternal question: why the suffering issue even has to exist at all. But since we live in a powerful age, when we take the view that we have control over most things, we ought to be able to get suffering under control as well. The question is whether rules, guidelines, precautions, psychological assessments and so on will be able to safeguard against a slippery slope effect. For we will always want the good and will always be able to defer to the intention.

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In 1948, the Oxford man of letters, C. S. Lewis, formulated a famous caveat of acting out of a wish of treating others for their own good. He said, Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience. Later the Bulgarian-French historian and sociologist Tzvetan Todorov corroborated this statement by warning against cultivating ‘The Good’. He refers to the novel ‘Life and Fate’ by the Russian author Vassili Grossman, in which one of the characters says, ‘Whenever we see this dawn [of an eternal good], the blood of old people and children is always shed.’ Todorov believes that we must opt out of ‘The Good’ as an ideology and make do with the simple goodness one person can show another. The intention of ‘The Good’ makes us want to impose it on our fellow beings. The British professor of ethics Len Doyal has put it in this way:  Of course, one reason for placing so much emphasis on individual intent may be a concern about slippery slopes to euthanasia. Once it is accepted that the interests of patients rather that the character of the clinician should dominate discussion of the moral and legal acceptability of non-treatment decisions or potential lethal

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palliation then it is just a short step to argue for active euthanasia. (Doyal 1999) --------------------------Why then, can one desire too much of a good thing? Shakespeare, As You Like It, Act 4, scene 1 --------------------------The other reason for taking the slippery slope argument seriously is empirical: we are already seeing the slippery slope in action. A number of countries have given us an object-lesson in this development. The legalization of euthanasia on request is the reason that cases without a request are also accepted. Each time, a ‘greater necessity’ has been cited in the service of good. The killing was committed on humane grounds, even though the rules were not observed. A  Dutch psychiatrist who performed euthanasia on a depressive patient without having followed the rules was acquitted by two lower courts yet convicted by a supreme court, which nonetheless ruled pragmatically to exempt him from punishment because he had acted in the best interests of the patient. There has also been a much-discussed case of physician-assisted suicide of an individual who was ‘tired of life’ (Huxtable and Möller 2007), but later a draft bill referring to the same concept and denoted ‘Completed life’ has been suggested (see below). The Netherlands has drawn up a thorough set of regulations used for guidance and teaching purposes. The aim was to have a set of clear-cut rules, but how clear can they be made? All rules are worded in such a way as to include assessments and judgements, resulting

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in imprecise, judgement-laden rulings. Individual people’s fates vary, and there are grey zones between life and death. The process of death is no more black and white for being forced into a set of rules intended to entitle a person to accomplish it. A similar (inevitable) vagueness appears in the wording of the Belgian Act. Such a request must be ‘voluntary’, well-considered’ and ‘repeated’. Moreover, it must not be ‘the result of any external pressure’. The reference to ‘external pressure’ adds almost nothing since any request that is the result of external pressure cannot, by definition, be considered voluntary. It is not clear what ‘repeated’ here means exactly, other than that the request should be made more than once. (Nys 2017) Years ago, a group of severely handicapped adults wrote to the Dutch government when legalization of euthanasia was in the offing. They introduced their communication with the following words: ‘We feel our lives threatened …’ (Fenigsen 1989). NGOs campaigning for the rights of the disabled have participated in the fight against euthanasia (Campbell 2019). They know that euthanasia comes about in a climate already hostile to the disabled, in an age where being disabled and dependent is regarded by many as worse than death. --------------------------One of the times when the media hosted a debate as to whether there should be a law on euthanasia, I got a letter from a youngish man. He has given me permission to quote it. He wrote,

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I suffer from a severe mental illness, schizophrenia, and God knows I don’t always consider my life worthy, and I often entertain the thought of death as a possible answer to my fate. But I cling to life because I am so privileged to be surrounded by people who, despite my melancholy and despairing nature, consider my life and my person worthy. I am more than deeply grateful for the fact that, in periods when I  have a hard job bearing up, there is someone there to help me. I cannot help but feel that it is disheartening to entertain the possibility of introducing euthanasia, as it would somehow render my fight in vain, since it would just make death an even more urgent possibility that would be harder to ignore. It would, as it were, drain all force from the slender hope on which I  live my life. And I am positive that I am not alone in feeling this. I believe I share it with many of like mind as myself and many other sick people, many of whom find themselves in an even more desperate life situation than myself. And there is, after all, a scary perspective to the discussion of a dignified life. What is a dignified life in society’s eyes? Does it entail being in a position to contribute to the national economy, being adaptable and swept up in a whirlwind of personal growth? And self-realization, and whatever else is dictated by the zeitgeist? For I think some of us must admit defeat on that score, and that will inevitably place even greater pressure on many of us, increasing and radicalizing the feeling of being a burden on society to start with. ---------------------------

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The American doctor Atul Gawande says, In the Netherlands, for instance, the system has existed for decades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. (Gawande 2014) Theo Boer is a Dutch professor of ethics. In July 2014 he referred to the trend in the Netherlands: ‘I used to be a supporter of legislation. But now, with twelve years of experience, I take a different view.’ Boer starts off by reproducing the following statistics:  In 2007 I wrote that ‘there doesn’t need to be a slippery slope when it comes to euthanasia. A good euthanasia law, in combination with the euthanasia review procedure, provides the warrants for a stable and relatively low number of euthanasia’. Most of my colleagues drew the same conclusion. But we were wrong – terribly wrong in fact. In hindsight, the stabilization in the numbers was just a temporary pause. Beginning in 2008, the numbers of these deaths show an increase of 15% annually, year after year. The annual report of the committees for 2012 recorded 4,188 cases in 2012 (compared with 1,882 in 2002). 2013 saw a continuation of this trend, and I expect the 6,000 line to be crossed this year or the next. Euthanasia is on the way to become a default mode of dying for cancer patients. The cases reported in 2015 were 5,561, but this includes an increasing number of patients with dementia and psychiatric conditions. The 6,000 line has been crossed. In 2017 the number exceeded 7,000.

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Theo Boer has carried his point here, as he describes a shift in the type of patients who receive these treatments. Whereas in the first years after 2002 hardly any patients with psychiatric illnesses or dementia appear in reports, these numbers are now sharply on the rise. Cases have been reported in which a large part of the suffering of those given euthanasia or assisted suicide consisted in being aged, lonely or bereaved. Some of these patients could have lived for years or decades. (cf. Appelbaum 2016; Kim et al. 2016) Boer says, Whereas the law sees assisted suicide and euthanasia as an exception, public opinion is shifting towards considering them rights, with corresponding duties on doctors to act. A  law that is now in the making obliges doctors who refuse to administer euthanasia to refer their patients to a ‘willing’ colleague. Pressure on doctors to conform to patients’ (or in some cases relatives’) wishes can be intense. Pressure from relatives, in combination with a patient’s concern for the wellbeing of his beloved, is in some cases an important factor behind a euthanasia request. Not even the Review Committees, despite hard and conscientious work, have been able to halt these developments. (Boer 2014) It may be speculated that when the doctor’s treating of patients is no longer based on medical ethics but shifted to a matter of the competent patient’s right the vulnerable patient may – paradoxically – become the victim.

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It can also be seen as a result of a slippery slope that one of the basic pillars of regulations and laws on euthanasia to date has now been jettisoned, that is, the caveat that it must be a voluntary choice made by a mentally competent person. The Dutch law makes no reference to it directly, but any decision about euthanasia was implicitly conditional on there having been a lengthy doctor–patient relationship beforehand. Now the highly controversial ‘End of Life Clinic’ has been set up to help patients discard their life and also to field enquiries from relatives attending with their sick patients. It naturally follows that the clinic has no prior knowledge of the patient other than the enquiry made by the patient and relatives. The clinic cannot satisfy another condition, either, that alternative treatment options must always be looked into and used, where possible. The clinic only has two options:  to euthanize or to send the patient back home. It should be added that the opening of the ‘End of Life Clinic’ has been received with a degree of relief by some doctors, because they themselves get out of euthanizing their patients or having anything to do with it other than merely referring their patient. Paradoxically, although the concept of autonomy seems to be more prevalent than ever, also in the Dutch debate on euthanasia, it can be seen as another example of a slippery slope that this basic pillar – that is, that it must be a voluntary choice made by a mentally competent person – has been abandoned in some situations. Since 2004 the Dutch courts have operated by the so-called Groningen Protocol, according to which a doctor is exempt from punishment for euthanizing children if the doctor decides to do so in particularly agonizing cases in consultation with the parents (Nys

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2017). However, it should be added that the option has only been used extremely rarely. --------------------------In 2017 there was press coverage of an elderly and demented Dutch woman who had been given euthanasia, even though she had not expressed a clear wish to have it at the time and had subsequently been out-and-out against it. In an advance directive, however, she had previously decided in favour of euthanasia; and when the subject was later raised, by which time she had become more demented, she had replied frankly: ‘Let’s go for it!’ So now the family had come around to the fact that it was going to happen. The doctor in charge had put a sleeping draught in the woman’s coffee first telling the relatives which cup not to take, but neither that nor additional medicine sedated the woman, and she protested when the needle was applied. The doctor asked members of the family to hold her while the actual injection of poison was administered. The doctor held the view – an interesting one, particularly in this context – that protests by demented people can be ignored because they are no longer competent. The procedure was criticized by the relevant Regional Euthanasia Review Committee (RTE), which stressed that the termination of life should have been called off, because it clearly was not the patient’s decision at the time. The event has later been referred to as the ‘coffee-euthanasia’ case. On 11 September 2019, the court in Den Haag acquitted the doctor considering that the previously written statement from the patient was decisive. The case was appealed by the prosecutor to the High Court, which in April 2020 ruled that doctors may legally euthanize some

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patients with severe dementia. In its judgement, the Court sought ‘to give direction to euthanasia lawmaking’.  ‘A doctor may respond to a written request for granting euthanasia to people with advanced dementia. In such a situation, all legal requirements for euthanasia must be met, including the requirement that there is hopeless and unbearable suffering. The doctor is then not punishable.’ Thus, the ruling noted that doctors can legally follow through with the procedure even if the patient can no longer agree to it, due to their illness. In addition, the ruling stated, ‘Even if it is clear that the request is intended for the situation of advanced dementia, and that situation is reached so that the patient is no longer able to form and express a will, there can be circumstances where no follow-up on the request is possible.’ This, however, precisely underlines that after all it is not the autonomy of the patient that is decisive here. Whether euthanasia is appropriate is determined at the doctor’s discretion. The Dutch ethicist Theo Boer in a Danish newspaper commented that ‘this judgment has far-reaching and catastrophic consequences for the way we treat patients with advanced dementia. … It means that protests from demented patients are no longer valid once they have made a written statement. … This also paves the way for also euthanizing people that are demented but who have not previously made a written statement.’ --------------------------In autumn 2016, a new bill generated debate in the Netherlands. The gist of it was that elderly citizens, tired of life, should also be eligible for euthanasia. The bill is referred to as the concept of ‘Completed life’. ‘It is no longer sufficient to offer euthanasia only to those patients

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with incurable diseases. The elderly are also entitled to a dignified death and, not least, to determine themselves when that will be,’ the proposers proclaimed. They aimed to be able to draft a bill during 2017 in consultation with doctors and ethicists. The law must be administered with great care, it says, and ‘candidates’ must be approved by ‘death helpers’ with a formal medical background. In a report from March 2017, however, among others the Dutch Medical Association has opposed the proposal, and so far the bill has not passed into law (KNMG 2017). (An overview of the matter has been given by Wijngaarden et al. 2017.) A Dutch study by Bolt et  al. from 2015 shows that while there is considerable agreement about being able to offer euthanasia to patients with incurable physical diseases, doctors are still hesitant about willingly providing euthanasia to the depressed, demented and life-weary (Bolt et al. 2015). The medical specialty displaying the greatest resistance to euthanasia was geriatrics, practitioners of which can be assumed to have the greatest experience of the ‘target group’. A  study done among Danish geriatricians confirmed this pattern (Matzen et al. 2016). Similarly, the recent survey among all members of the British Medical Association showed that most opponents were found among members of medical specialities such as palliative medicine, clinical oncology, renal medicine, geriatric medicine and general practice (BMA 2020). It can be seen as a kind of slippery slope that more and more is being defined as suffering for the purposes of euthanasia, such as our ageing, and our senses and aptitudes being weakened (Pereira 2011). The Swiss suicide clinic Dignitas provides help with suicide – assisted suicide – also in the case of patients who do not have severe

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health issues. An elderly woman who ingested the poison was not ill but felt lonely and was upset at the imprint old age had left on her appearance. Another Swiss suicide organization by the name of Exit advocates a policy that patients older than 85 wishing to die need not undergo the same prior examinations as those under 85. Psychologists’ consultations have otherwise been set up to establish with greater certainty whether the patient’s death wish is meant seriously, but a spokesman for the organization does not feel that elderly people are up to this. ‘It’s not dignified either,’ as he says. In Belgium euthanasia was legalized in 2002. Here the law was not preceded by many years of public debate to the same degree as in the Netherlands, and it was not particularly the result of desires on the part of the general population, let alone doctors. The Belgian law is more wide-ranging than the Dutch one; in Belgium mentally ill people without the faculty of self-determination are also eligible for euthanasia. Here again the principle of self-determination has been abandoned. The suffering argument carries the day. In 2014 a law was then passed permitting euthanasia of children, effectively disregarding one of the basic elements of former regulations and laws regarding euthanasia in the process, that is, that it must be a voluntary choice made by a mentally competent person. ‘Suffering knows no age,’ as one of the advocates so neatly put it. In the run-up to the law being revised, images of severely disabled children were regularly shown on TV and in other media. That form of propaganda is also known from twentieth-century history (Burleigh 1994).

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The Belgian Act from 2002 makes no distinction between disorders of a physical or mental nature or origin. This, combined with the fact that mental suffering without physical suffering in this scenario is a sufficient condition, has led recently to the relatively common acceptance of euthanasia on the request of psychiatric patients. This demonstrates that practises are now possible that were considered as being prohibited when the Euthanasia Bill was discussed in Parliament. (Nys 2017) MacKellar (2017) is in line with this observation:  Many proposals to change the law have been introduced in the Belgian parliament with the aim of extending the qualifying conditions under which euthanasia can be performed. Each time, there is a certain logical reasoning, based on notions such as equality and justice, behind the proposals highlighting, for example, forms of suffering which were not included in the original euthanasia legalisation. The philosopher David Albert Jones in 2017 stated that there are ‘continual increases in rates of euthanasia, and not only official euthanasia but unreported euthanasia, and not only reported and unreported euthanasia but non-voluntary euthanasia (death by LAWER [life-terminating acts without explicit request] or assisted suicide. … The total number of deaths has climbed steadily and, it seems, uncontrollably.’ Jones adds that there is an increasing proportion of non-cancer deaths, and especially psychiatric and other non-terminal conditions. For example, between 2010 and 2015 the prevalence of euthanasia in Belgium

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for ‘nonpsychiatric disorders’ and for ‘multiple pathologies’ (a term which can cover the ill health of old age), increased from a combined 41 cases (4.3 per cent of euthanasia) to 272 cases (13.5 per cent of euthanasia). (Jones 2017) Jones (2017) summarizes:  The enquiry has shown that euthanasia practice in Belgium raises grave concerns within Hippocratic, utilitarian and libertarian frames. These frames have indeed picked out distinct concerns and vary in relation to the strength of the concern and the degree of certainty. Nevertheless, there is convergence on a central practical conclusion, that from none of these three perspectives does the evidence show the Belgian euthanasia experiment to have been successful. Professor in law Etienne Montero (2017) makes a similar conclusion:  ‘Since euthanasia was legalised in Belgium, in 2002, experience demonstrates that it is an illusion to believe that euthanasia can be permitted as a narrowly circumscribed, welldefined exceptional practice to which “strict conditions” apply and which is under rigorous control.’ The slippery slope also manifests itself in a kind of acceptance or habituation. An obituary of a Dutch doctor in the British Medical Journal says, ‘Died from neuromuscular paralysis and euthanasia.’ Euthanasia has now become a diagnosis on a par with others, no less. It is difficult not to see the change in the law as the result of the ‘euthanasia mentality’ or ‘normalisation of euthanasia’ discussed whereby euthanasia becomes the appropriate and chosen solution

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when there is human suffering. As euthanasia is resorted to more widely, the message conveyed is that it is undignified to be in pain, to suffer and to be dependent. Illness or old age can be unbecoming and can be accompanied by infirmity and debilitation, failure of the senses and dementia. Old people can also be lonely, unhappy and clumsy. Some people are multi-disabled. Some are brain-injured. A euthanasia mentality may pave the way for a brutalized view of weak fellow humans: they (and society) are best served by removing them. As the philosopher Bernard Williams said, ‘ “He would be better off dead” can be said for many dubious reasons: the most dubious is that we would be better off if he were dead.’ The ideas about permitting euthanasia and assisted dying are spreading. There is legislation under review in a number of countries’ parliaments, for example, in Portugal, Spain, New Zealand and Ireland. In 2020, the High Court in Germany overturned the hitherto existing ban on professionally provided assisted suicide. This is thought to pave the way for active euthanasia in Germany. The development is challenging because the issues surrounding assisted dying and euthanasia are particularly contentious in Germany because of its history (Schuetze 2020). There is much therefore to indicate that there is increasing acceptance, which I believe has to do with the notions that no area should be excluded from the domain over which people must be able to exert power. Arguments are not presented in new ways, making constant reference instead to the arguments of suffering and the right to self-determination, as previously reviewed in Chapter  5 and in addition to the recurrent opinion polls.

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One example is an editorial from 2014 in the British Medical Journal entitled ‘Why the Assisted Dying Bill should become law in England and Wales’ with the categorical ‘answer’ already in the subheading: ‘It’s the right thing to do, and most people want it’ (Delamothe, Snow and Godlee 2014). The article, which presents the usual arguments uncritically and makes the usual reference to opinion polls, concludes with the slightly patronizing words:  ‘Let us hope that our timid lawmakers will rise to the challenge.’ However, trend-setting English doctors (including Iona Heath (2012) and Margaret McCartney (2014)) have opposed the pro-euthanasia campaigns running. The euthanasia mentality or normalisation of euthanasia means that euthanasia becomes the obvious answer to suffering; and since it is only ever done in the service of good, no one discovers that it leads at the same time to a view of humanity in which people with physical and mental disorders and functional impairments or dependent people, or people who fall by the wayside in some other way, are considered undesirable and should be assisted to leave this life. D. A. Jones (2017) expressed this view in the following way:  ‘From the beginning the aim was to relieve the suffering associated with terminal illness and chronic conditions, but this was intertwined with a concern that some lives were not only a burden to those who possessed them, but were also a burden to society.’ Reasoning rationally, direct benefit could be had from euthanasia into the bargain. In an article from 1991 the Danish philosophers Nils Holtug and Klemens Kappel wrote, If options were available for euthanasia, it would be possible to resuscitate in a number of those cases where doubt prevailed, and

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if a patient turned out to have severe brain damage, their suffering could nevertheless be ended. Another way in which euthanasia might also conceivably save lives is through organ donation. Some patients will have intact organs that would have gone to waste with passive euthanasia (treatment cessation and palliation) or would not be available without active euthanasia. This can benefit others. Howard M.  Ducharme (2000) attributes this utilitarian idea to the American pathologist Jack Kevorkian, who performed assisted suicide and in the late 1980s advocated ‘medicide’:  the induced death that benefits others by making, for example, experimental research and organ harvesting possible. Ducharme has dubbed this principle ‘thrift-euthanasia’, which is ‘an intentional act of one and more individuals that directly causes, or knowingly contributes to, the death of another in a manner conductive to the benefit of others’. He convincingly argues that for many years it has already been taking place in the United States on a practical level with the aim of procuring organs for transplantation (Ducharme 2000). More recently a British paediatrician, Dr. Dominic Wilkinson, and a psychiatrist, Julian Savulescu, in a bioethics journal propose allowing a patient asking for euthanasia to donate his or her organs (Wilkinson and Savulescu 2012). The concept is called ‘organ donation euthanasia’, and it is estimated that 5–10 per cent of those receiving euthanasia are healthy enough to be able to be used as donors. In his article ‘A Last Act of Grace?’ Trevor Stammers report that in Belgium organ donation following euthanasia has been practised since 2007 although in small numbers (Stammers 2017). The number is expected to rise with the increase in euthanasia in minors and in

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patients with mental illness. This also means that more organs will be suitable for transplantation since there is a lower risk of transferring malignant cells. Eurotransplant has been accepting organ donations from euthanasia cases since 2007, and in 2008 made recommendations on how to proceed. A  practical manual has also been developed (Bollen et al. 2016). ‘A utilitarian ethical analysis will always tend to gravitate towards expanding the pool of donors from whom organs can be taken’ (Stammers 2017). The next step in the development can be expected to be what Stammers denotes ‘euthanasia by removal of vital organs’, which also makes heart transplantations possible. Some regard it as a win-win situation: The patient is released from his or her agonized life and is allowed to become a donor, and the organs benefit others (Ducharme 2000, Wilkinson and Savulescu 2012). Hitherto I have thought that the slippery slope argument against a law on euthanasia was not particularly good on account of the fundamental objection that can be raised to arguing on the basis of an alleged possible future. But with developments in recent years I have changed my mind. The argument has grown increasingly robust.

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9 Solemn arguments

I have occasionally been told that my attitude towards euthanasia and assisted suicide is Christian or ascribable to a Christian outlook. It may be something to do with the Ten Commandments in the Old Testament, the fifth of which reads: ‘Thou shalt not kill.’ I suspect that the assertion is used because it is convenient to classify those one does not agree with as dogmatic, that is, they justify their views on the basis of doctrinal tenets instead of arguments. Solemn arguments against assisted dying say that life is a gift, for example, or that life is inviolate. These can be good opinions in some contexts but to my mind do not hold water in this discussion. If life is viewed as a gift, there must also be a giver, and if that giver is good, it must also be able to accept if we do not want to have that gift. The Danish professor of the history of ideas, Johannes Sløk, in a radio broadcast once illustrated this line of thought by saying, ‘I abide by the view that life is mine, and I can therefore do with it as I please, possibly even discard it as a gift I would rather do without.’ However, such trains of thought soon become metaphysical. Likewise, if life is inviolate, it must be preserved at all costs. But I  do not think so. This has been exemplified in manifold ways in

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the preceding pages. We would then be unable to defend treatment cessation, too, as we would be obligated by something absolute  – indeed, something dogmatic, namely, to preserve every life. At any rate it would force us to devote all our resources to extending life, and that would soon become pointless. Incidentally, there are many examples of us violating nature and what is natural. We use synthetic penicillin to treat the mightily natural pneumonia, we implant artificial hips and help our fellow human beings by doing so – even believing that it is the right thing to do. Indeed, I  believe that religious arguments can be detrimental to sober-minded thinking, such that, if life is to be preserved at any price, even futile treatment must be given and continued to absurdity. The traditional opposition of the Catholic Church to any measure of discontinuing treatment might even have urged secular politicians to promote legalization of assisted dying in a wish to curb the influence of the church on citizens’ self-determination. Together with a general confusion in distinguishing treatment cessation from taking life (see p.  27), this may pave the way for drafting laws on euthanasia. Indeed, that mechanism may have been active in the recent plans for legalization in Spain and Portugal. As stated, I do not use numinous arguments against legalization of assisted dying, for I do not believe that they are weighty, and I do not subscribe to those views. Nonetheless, they have occasionally been laid at my door and subsequently easily debunked. In my eyes the crucial arguments against a law on euthanasia are secular in nature and are specifically based on demonstrating that the customary arguments in favour of euthanasia (avoidance of

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unbearable suffering and respect for the right to self-determination) are untenable.

Dignity There is, however, one solemn concept which advocates of assisted dying in particular are fond of using, and that is the word dignified (and dignity) – and its antonym undignified (and indignity). ‘Dignity of the human being’ or ‘human dignity’ is frequently used in human rights declarations, conventions, resolutions and so on  – wherever solemn language is used. But what is meant by it is seldom more narrowly defined. The discussion on euthanasia often adduces the point that people must be able to die with dignity. It is wished to have death occur at a point when there is still some dignity, as it is phrased. At the same time, then, the implication is that a human being becomes undignified at some point. The concept of dignity is paramount in this context. ‘The principles of autonomy and the alleviation of suffering have often been expressed in terms of human dignity:  The dignity of a chosen death and the indignity of suffering and dependence’ (Jones 2017). A suicide clinic in Switzerland is run by an association bearing the name Dignitas – the Latin word for dignity. In the US state of Oregon, the law is called the Death with Dignity Act. In Denmark there is an association that works to have euthanasia legalized; it calls itself ‘A Dignified Death’. I cannot imagine a single person who would not wish death to take place with dignity for both themselves and others. But to many

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people’s ears dying with dignity has become a paraphrase – and almost a synonym – for euthanasia. Once again it is the euthanasia mentality asserting itself. The words ‘dignified’ and ‘dignity’ are persuasive, because they are associated only with positive thoughts, and that makes it difficult to disagree. We see dignity in the choice made by members of society in bygone ages when, enfeebled and burdensome to the community, they placed themselves outside of it and sought death of their own accord. This was to enable the others to survive and live to fight another day. Was it not dignified, too, almost transcending comprehension, when four young priests during the Second World War handed their life jackets and seats in the lifeboat over to others and drowned? A stamp was published to commemorate their heroic deed. The dignity in these examples comprises the existence of something that is worth more than life, and they show that one’s life can be given for someone else. The theologian Rudolph Arendt (1992) says, Life is too good to throw away, but not too good to give away. On the contrary, it is best, if given away, that it happens either in an instant, or that all of life go with it. The paradoxical thing about life is that it can only be given away when it is held in high esteem. Where life is disdained, it cannot be given away, though certainly thrown away perhaps, which is something altogether different. Only because life is great is it great to sacrifice life. In the campaign to legalize assisted dying the concept of dignity has been displaced  – imperceptibly but displaced quite decisively conceptually  – so as to make the meaning almost the opposite. ‘A

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dignified death’ is not to give life because it is worth a lot, but to want to dispose of it because it is not worth anything. By equating ‘a dignified death’ or actually making it synonymous with euthanasia, this not being in control over the time of death becomes undignified in its own right. The fact that a person can determine and make his or her own choice, and wants to vouch for something, is regarded as dignified. That dignity ties in with the ideology of self-determination – that is, with the notion of freedom of choice, having control over things and having decision-making power. It is alarming if autonomy is made the benchmark for human dignity. For if we link dignity with autonomy, with being in control over things, control of our life and our functions, we will ineluctably end up linking indignity with not having control of our capacity for reasoning, walking, passing water and so on. The people of our age are described as selfish, and yet it is still more difficult for many to receive than to give. Having the strength and the power to provide and to give, that is control. Taking, helping oneself, that is control. But receiving? Receiving indirectly becomes an expression of weakness and loss of control, and hence also an expression of something undignified. We think of the Good Samaritan in the parable as a dynamic individual who knows what needs to be done, who is professional and has the situation under control. But what about the man who was assaulted and wounded, who did not have control over anything? Was he unworthy and without dignity? No, not at all. In reality the parable also shows us that needing help or getting care does not make one unworthy – that receiving does not make one unworthy. ---------------------------

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I once got a letter from a psychologist who was apparently a keen supporter of euthanasia. She wrote, ‘It has to be down to the actual individual to be able to determine his or her own death, and when they themselves consider life to be over, and the waiting time for blessed release and death feels too long.’ She went on: ‘… I think you should be ashamed of yourself for condemning far too many people to carrying on life when they themselves consider that life will be nothing but a desperate desire to die as quickly as possible. Funnily enough, people who have been very active and functioned independently are generally those who wish to be able to choose euthanasia when suddenly saddled with accepting other people’s help to even function. For me, life in a care home in the company of other people, while I myself am functioning very poorly or am dependent on help for even intimate things like visiting the toilet and hygiene, feels like it’s crossing the line and humiliating. I’ve lived an active life and wish to actively take responsibility for when life for me is finished.’ I don’t know where the psychologist has it from that those wishing for euthanasia are generally people who have been very active and functioned independently. Come to think of it, the inactive ones, those who function un-independently – who are they, apart from not being the letter writer? They are just some others. Some who do not want euthanasia, because they have not been active and independent (?)  I  think it is a false antithesis. After all, no healthy people wish for an existence in which they are not healthy but are forced into inactivity. No one wishes in advance to fall ill, to become disabled, or demented, or dependent on others to help with visiting the toilet … it

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ranks among the type of statement where it would be absurd to state the opposite. But it is as if actually preferring to be healthy and independent, like anyone else does, rather than be sick and need help and care, becomes a kind of argument in favour of euthanasia. --------------------------One form of dignity is part and parcel of being a thinking person. That dignity can be rooted in people being able to relate to themselves and others on the basis of overarching – for example, moral – principles. People have the ability to act ethically, and, in other words, have selfdetermination and free will. Hence it is a form of dignity which exists more or less by virtue of ourselves, a dignity which each individual creates and maintains, and is possibly earned. So, it is possible to use an expression like ‘it is beneath my dignity’ (infra dig, colloquially), and we still speak of visiting dignitaries and so on, which echoes this. But there is another form of dignity, and it consists of merely being a person. Dignity granted qua human being. When it comes to that dignity, it is apparently sufficient to be a human being. It is sufficient to be ‘a person’; there is no need to be a ‘personality’ as well. A friend recounts: My mother-in-law turned 92. She fell and bashed her arm one day. After the fall she was no longer able to use her wheeled walker and so could not cope on her own around the home as she always had done. Her life had been good despite a deal of worry and sorrow. She was like a cork that fleetingly disappeared below the surface during

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life’s trials and tribulations, only to quickly surface again and move on – predominantly cheery and grateful. She could also be both harsh and shrewish and she was opinionated. I  had known her since I  was very young, and we became very attached to each other. With her loyalty and practical help, she followed me closely and helped me through laborious times. She was tough – I thought. In her later days she sometimes rather fretted about the prospect of being hospitalized or ending her days in a care home and thus being subject to being cared for by others. She said it was undignified not to be able to manage your basic needs yourself. So, when, after the fall, she was admitted to a big, busy orthopaedic surgery ward, she was completely beside herself. Here she received very hard-handed treatment, which made her unhappy. She gradually grew more and more confused. It was as if the staff did not see her as anything at all but old and difficult. But of course, she was so much other than her illness and her difficult old age. This was followed by a transfer to a respite centre, which made things even worse. The staff were absent, and the lack of care was heart-breaking. She became even more confused, scared, and at the same time demanding as well. In a sorry state, she was admitted somewhere once again. It was better here, and she had a somewhat more peaceful time of it. But she was broken. She could lie on her bed and be so frightened of falling, but a good nurse would say: ‘Look at me, trust me,’ and the priest said to her: ‘You’re falling into living hands.’ She regained a little trust. Life slowly ebbed away, however, and she died – it took two months.

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Along the way I hoped it would end soon, but also remember clearly my relief that it was not a choice I  or we had, because that option would have brought with it the uncertainty as to whether we had chosen correctly. As relatives we were spared that responsibility. Since then I  have often thought that her final days became undignified. Not because she grew weak and required nursing, but because that care failed her. Where we ‘earn’ our dignity ourselves, we become vulnerable, for that dignity can be threatened by guilt and shame. That dignity is fragile, for it depends on our own abilities and depends on whether we are in control of our functions and our life. But in that case indignity is involuntarily linked to not being in control. Dignity here becomes almost synonymous with self-esteem or self-regard, and it can be dismantled in a person who feels unwanted. Those who surround a person – the relatives and hospital staff, for instance – can therefore have a powerful influence on the way a person perceives themselves and their life. A person can lose self-respect. If a person feels rejected and redundant, for that reason he or she may feel unworthy and disowned, having a fractured sense of dignity and perhaps even wish they were dead (Chochinov et al. 2002). The same does not apply to the dignity that goes with actually being human, that inherent dignity. Here, then, one does not become unworthy by losing one’s abilities and by losing control of one’s functions. Needing help or receiving care does not make one unworthy. We can, for example, also treat a person who has lost his or her capacity for thought as worthy and with dignity, and – if he or she

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is close to us – be fond of them too, that is to say, without that person having deserved or earned it. Think of an infant. It has no control over anything much. Indeed, it only survives thanks to someone looking after it and caring for it. Yet it is not unworthy. An infant has its own dignity, which has not come by as a result of its own efforts. An offer of help to a desperate person to assist them from this world with euthanasia  – that offer may be accepted because the person is tormented and feels abject and redundant. At this point, too, I will mention again that the doctor–patient relationship could be undermined if the option of euthanasia were available, because the very act of being poised to offer such an option can be a rejection and a message that the person can be dispensed with. Is the indirectly given option an indirect assault on one’s dignity? Can the actual evaluation of a person’s quality of life and the determination of a person’s lifevalue play a part in devaluing it? We speak, for example, of it being undignified for the patient not to be able to fend for themselves but to need care. The patient has become care-demanding, as they say. Is it conceivable that a person’s dignity is another word for a person’s worth here? A euphemistic paraphrase of the word value? If dignity is interlinked with or in reality means value, it is an objectification, and that is a violation of a golden rule of ethics. It is offensive and painful for a person to become an object. And moreover, not to be valued, but evaluated. And if it takes place under cover of referring to dignity or of the patient’s situation now being unworthy, it is hypocritical and a far cry from the dignity there should be in human relations.

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10 The language

Words and linguistic usage influence our way of thinking. So, the words we use to describe concepts are key to the way we perceive things. When it comes to talking about death (the Grim Reaper), we employ any number of embellishing paraphrases and circumlocutions, or euphemisms. We talk about drawing one’s last breath, embarking on the final journey, going the way of all flesh, passing over or away and many others. Before going off to war, the soldier may say, ‘Take care of the children, should anything happen to me!’ (meaning, of course, should I  die). A  farmer I  met had published his memoirs, quoting passages from his mother’s diary, which relates her mother’s final difficult days in the home, where she died in 1950. The diary gives examples of euphemistic paraphrases: ‘Grandma is still poorly. She’s definitely not long for this world now. May she soon move on to greener pastures.’ That wish is reiterated at intervals of days: ‘May she soon be called home to God … Lord, come soon and lead mother by the hand through this vale of woe.’ In the context of euthanasia, that loveliness is maintained; euthanasia itself is a euphemism, coming as it does from the Greek and meaning ‘good death’. Mercy killing is done out of mercy, and

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mercy killing is compassion. In connection with euthanasia there are also different expressions intended to soften and embellish. I realize perfectly well that there is a difference between saying, for example, euthanasia, putting down or killing. The words have vastly different connotations. In the debate as to whether euthanasia should be legalized, it is politically incorrect, indeed almost objectionable, to refer to the Nazis’ killing of developmentally and physically disabled people. It is regarded as an ill-placed bugbear, and I  realize that it is like mentioning the word ‘bomb’ at an airport. Everything changes after that. Alluding to Nazi Germany triggers the almost knee-jerk reflex response ‘now you’re playing the Nazi card’. It is a debate crusher, because there is nothing more to say in the first instance. It may therefore be necessary to reply:  ‘now you’re playing the now-you’re-playing-the-Nazi-card card’. I dare to do it anyway, as I am perfectly well aware that legalizing euthanasia in our era will not lead to it evolving as happened in Nazi Germany. The backdrop to the Nazi era was different; back then they professed ‘racial hygiene’ (eugenics) and ‘social Darwinism’, and the euthanasia programme (Der Krankenmord. Aktion T-4) was justified quite overtly by arguing that handicapped people were a strain on the economy (Burleigh 1994). The ideas of racial hygiene were developed in the 1920s and 1930s, and additionally championed in many countries, including Scandinavia. The final euthanasia programme in Nazi Germany was implemented by unscrupulous people who consistently attempted to keep their criminal activities secret. No, according to declarations and resolutions, our age is the era of human rights, so first and foremost euthanasia has been propagated

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in such a way that it is a kind of human right to be able to choose one’s own death and time of death. It is primarily the ideology of self-determination that is intended to motivate legalization. It is the desperate and unattainable yearning for ‘control’ that seems to drive much of the debate. In mentioning the Nazi euthanasia programme, then, my point is not to conjure up a spectre of the way things will develop. No, my point is purely to highlight some interesting parallels between the linguistic usage of the past and the present. The linguistic usage in which such activities are cloaked is what interests me. My wish is to point out that the euphemisms were in use back then too (Hartling 2009). The Nazi period saw the start of talk about granting people ‘mercy death’ (Gnadentot). The word was first used in the SS mouthpiece Schwarzes Korps (Black Corps) on 11 March 1937. Taken at face value, the word Gnadentot is a gracious or merciful release from pain and suffering in a person who is fatally ill. In 1920 legal expert Karl Binding and psychiatrist Alfred Hoche had published an epoch-making treatise entitled Die Freigabe der Vernichtung lebensunwerten Lebens (Allowing the Destruction of Life Unworthy of Life). With the treatise they introduced the term ‘life unworthy of life’, which became the cornerstone of the euthanasia programme with the killing of physically and mentally disabled people. It was ‘scientific’ committees and specially appointed doctors who stipulated which lives were worth living. ‘Life unworthy of life’ became the never-failing justification and rationale for the Nazi period’s euthanasia programme, which was instigated in all its horror from 1939.

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The point of departure for the two authors, Binding and Hoche, was the notion that ‘every individual had sovereign powers to dispose of his or her own life; specifically, to commit suicide’. They thought it was an act of healing when a doctor provoked a person’s death: ‘if it spared that person protracted suffering, only a ‘pedant’ would regard this as curtailing a person’s life in any meaningful sense; rather it was merely a question of substituting a painless, shorter-term death for longer terminal suffering.’ But they went further and asked, ‘Is there human life which has so far forfeited the character of something entitled to enjoy the protection of the law, that its prolongation represents a perpetual loss of value, both for its bearer and for society as a whole?’ In 1922, in his book Die Erlösung der Menschheit vom Elend (Mankind’s Deliverance from Misery), the author Gerhard Hoffmann posited four ‘requirements for compassion’:  extermination of the mentally ill; mercy killing for the terminally ill; mercy killing for the exhausted; the killing of crippled and incurably ill children. The 1939 Nazi draft law on euthanasia featured a first section worded not so essentially differently from the conditions seen in modern proposals for legislation on euthanasia. The proposed wording of Section 1 read as: ‘Whoever is suffering from an incurable or terminal illness which is a major burden to himself or others can request mercy killing by a doctor, provided it is his express wish and has the approval of a specially empowered doctor.’ This, however, is followed by Section 2 with a more alarming wording: ‘The life of a person who, because of incurable mental illness, requires permanent institutionalization and is not able to sustain an independent existence may be prematurely terminated by medical measures in a painless and covert manner.’ Thus, in the draft, so-called voluntary euthanasia was dovetailed with

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euthanasia on mentally incompetent patients. The Nazi ideologues diligently stressed the philosophy in the first section – including selfdetermination – which was then able to pave the way for the second. The draft law was never adopted, but the euthanasia programme was initiated with the help of a personal note from Hitler in October 1939 to Doctors Brandt and Bouhler. Yet even this note contained some rather euphonious and seemingly responsible-sounding phrases, not altogether different from what might be heard nowadays: ‘Reichsleiter Bouhler and Dr. med. Brandt are charged with responsibility to extend the powers of specific doctors in such a way that, after the most careful assessment of their condition, those suffering from illnesses deemed to be incurable may be granted a mercy death.’ The language was an important part of the propaganda, which showcased mentally handicapped people as nasty burdens that had to be borne by the healthy population. The institution at EglfingHaar near Munich even organized displays of deformed people for members of Nazi organizations, who could observe for themselves the patients’ freakish features and forms. As described in detail by the British historian Michael Burleigh (1994), the film industry supplied propaganda films with recordings of handicapped people. They were shown in conjunction with ordinary cinema screenings. These days they would have been shown on television. The film Ich klage an (I Accuse) is from Nazi Germany in 1941 and merits further discussion. It differed from other propaganda films of the time in being far less primitive, nor did it take the current political situation as its direct starting point. The talented Wolfgang Liebeneiner was the director. The film describes a devoted husband, a successful professor, who carries out a mercy killing on his wife, who has asked

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him in earnest to do so. She has sclerosis and is severely debilitated, but she expresses her relief, and in a long death scene they assure each other of their undying love. In the court case that follows, the husband accuses the system and its outdated laws, which do not permit the deliverance of thousands of suffering people  – ‘I Accuse’. He is supported by his friend, Dr. Lang, who once saved the life of a child – a child who has since been deaf, blind and an imbecile. In this way the questions of voluntary and involuntary euthanasia are deftly interwoven. The film is so cleverly made that even people who watch it today embrace its message. A poll before and after a screening in recent years generated increased support for euthanasia, even of people who were themselves unable to ask for it – retarded and handicapped children. First and foremost, Binding and Hoche’s expression ‘life unworthy of life’ has a clear linguistic and conceptual link to the contemporary debate on assisted dying. It is not dissimilar to the expression ‘an unworthy life’ or ‘loss of dignity’. A  point of view often heard, as mentioned, is that euthanasia allows death to occur while there is still dignity. At the post-war Nürnberg Trials in 1946, the American physician Leo Alexander was appointed chief medical advisor for the US Chief of Counsel for War Crimes. A few years later he wrote, In an increasingly utilitarian society these patients are being looked down upon with increasing definiteness as unwanted ballast. A  certain amount of rather open contempt for the people who cannot be rehabilitated with present knowledge has developed. This is probably due to a good deal of unconscious hostility, because these people for whom there seem to be no

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effective remedies, have become a threat to newly acquired delusions of omnipotence.

More recent euphemisms The expression ‘life unworthy of life’ has also been seen in the contemporary debate. The Danish philosophers Holtug and Kappel, in a debate contribution from 1991 on euthanasia, wrote, With regard to euthanasia, the situation is, unfortunately, that some people have no prospect of an existence worth living. If they choose to die, it is hard to see that they will have offended against anything. They may have offended the survivors, of course, but that is another matter. If one agrees with this view, there is every possible reason to advocate euthanasia, simply because some lives are not worthy of life. In a passage in Binding and Hoche’s treatise seventy-one years previously on life unworthy of life, it says that killing idiots cannot be regarded as an offence against anyone’s will. ‘Their life is absolutely pointless, but they do not regard it as being unbearable. They are a terrible, heavy burden upon their relatives and society as a whole. Their death would not create even the smallest gap – except perhaps in the feelings of their mothers or loyal nurses.’ A motion for a resolution in the European Parliament from 1991 was entitled ‘Help for the dying’. So far, so good, but on further examination the point of the motion was to euthanize those patients

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who could no longer be cured. It was therefore proposed that the Parliament move that, in the absence of any curative treatment and following the failure of palliative care correctly provided at both psychological and medical level, each time a fully conscious patient insistently and repeatedly requests an end to an existence which has for him been robbed of all dignity and each time a team of doctors created for that purpose establishes the impossibility of providing further specific care, the request should be satisfied without thereby involving any breach of respect for human life; and going on: When, at the end of a long illness against which he has fought courageously, the patient asks the doctor to terminate an existence which has lost all dignity for him, and the doctor decides in all conscience to assist him and to ease the final hours of his life by allowing him to fall asleep peacefully and finally, this medical and humane assistance (sometimes called euthanasia) is respect for human life. Notice the lyrical and positive wording, like the doctor deciding to ‘assist him’ and ‘ease the final hours of his life by allowing him to fall asleep peacefully and finally’. Notice also the many judgements called for. How many times is ‘repeatedly’, how much is ‘all dignity’, how ‘courageously’ must the patient have ‘fought’? But especially: How can a motion on killing become ‘respect for human life’? The motion put to the European Parliament was not adopted.

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According to the minutes of the debate in the Dutch upper house in connection with the final legalization of euthanasia in 2001, the Dutch minister of justice said that an important factor was ‘legislative security for the doctor, for the patient and for society’s interests in general with regard to the government’s effective protection of human life’ – presumably referring to the fact that it took place in a controlled fashion. The minister of justice concluded that ‘the law is a reflection of the conscientious way our society meets patients’ genuine desire to end their life when they have unbearable suffering.’ Again, it is rather surprising that a law to euthanize patients becomes ‘effective protection of human life’. The Supreme Court of Canada in 2015 directed the government to draft a law on physician-assisted dying, stating that assisted death could not be prohibited ‘for a competent adult person who clearly consents to the termination of life and has a grievous and irremediable medical condition (including an illness, disease or disability), that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition’ (Supreme Court of Canada 2015). I venture to say that it is worthwhile comparing the wording with the Nazi draft law from 1939, see p. 158. To summarize:  Binding and Hoche called euthanasia an ‘act of healing’ in 1920. The 1991 motion for a resolution put to the European Parliament called it ‘respect for life’, and in the Dutch Parliament it now became ‘protection of human life’. Binding and Hoche’s ideas gained many supporters in the 1920s. In 1925 people said as part of the debate that it should be possible to do for the terminally ill what anyone would do for a sick animal – that is, put it down.

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I go into the argument a little here because today it also crops up regularly (cf. the pupils’ question on p. 9). For example, the wording is that we often treat dogs better: when old and distressed; when, in a nutshell, they are ready, they are allowed to die. The question is, should people be treated any worse than animals? The comparison between putting down animals and people may seem cogent from a superficial perspective, because everyone surely agrees that people who are suffering should not receive inferior treatment to animals. But can the question be turned around to ask, ‘Do we wish, then, to be treated like animals?’ We kill animals for many reasons. We eat them, and we use their skins for leather and fur. But even where pets are involved, it is particularly obvious that this cannot include voluntary euthanasia, as the euthanasia would not be at the animal’s own option. The point of view therefore clashes with the recurring argument in favour of legalizing euthanasia, which is that it must be a reflection of self-determination or free choice of one’s own death. The fact that euthanasia is respect for the patient’s right to selfdetermination remains the lynchpin in contemporary reflections on euthanasia, albeit with some significant exceptions initially, as discussed previously. The desire for euthanasia must be explicit and persistent. How is such consent obtained from an animal? Well, no  – but we know that it would have requested it, had it been able  – so the riposte goes perhaps. When it comes to euthanizing pets, it is done in the best interests of the animal, it is said. But that is only one side of the truth, the nice side, because we may well put a dog down in order to spare it, because we do not want it to endure more suffering, though indeed also because we do not want to witness its suffering or we are

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impatient, or because it has become messy and a pain to look after, or a strain on the finances. But it is always for the dog’s sake, of course, isn’t it? It has become unhygienic, and it does not like that, we say. Or we have to move, and it won’t be happy in a flat; it would be a shame for the animal. If the ban on killing is made relative – so if killing can be permitted under certain conditions  – there is scope for misuse, because the judgements included in assessing whether those conditions have been met are uncertain and can be subject to drift, and because there can be shifts in motives. At the same time, whatever the motive, it will continue to be maintained that being euthanized is in the patient’s best interests and for the patient’s own sake. Between the arguments of past and more recent ages and euphemistic language, there are a number of striking parallels which our modern-day debate on euthanasia cannot just ignore. I believe that the Danish journalist Helle Ringgaard has a strong point by saying, ‘Introduced by law, assisted suicide is frightening. Never vote for a law you would not let your enemies enforce. One day the “enemy” might be indistinguishable from a qualified health economist.’

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11 Is euthanasia an impossible notion?

When physicians are treating a seriously ill patient, they can be overwhelmed by the patient’s suffering, coupled with a feeling of their own powerlessness and helplessness. The desire to alleviate suffering for everyone involved can even include a wish for the patient to die, therefore. As outlined in this book, I believe it is good to have in place a barrier to action driven by thought. But that does not mean that such notions of euthanasia can be discarded entirely or are without any weight. Advocates of euthanasia certainly have arguments that need to be listened to. You might also hold that euthanasia is ethically permissible but that it should not be legalized because of unpredictable and serious consequences. Is a compromise possible? In his book on euthanasia, Huxtable (2013) adheres to a view that legalization might involve a compromise between the stances held by advocates and opponents of active euthanasia, thereby trying to accommodate the two groups, which both seem to have strong opinions.

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I might also pose the question whether I  myself would be able to perform euthanasia. The question cannot be dismissed as an impossibility, cf. the example of the soldier in the burning car (p. 52). In a sense such a dismissal would be arrogant. There are conceivably situations in which that would be the choice to be made and the action to be performed. In other words, there are ethical dilemmas and conflicts where euthanasia might potentially be the lesser of two evils. In Chapter 9 I discussed the fact that some people justify their resistance to euthanasia with religious arguments. Rather, I  would say the opposite. Ideally, charity might well be the actual motive for mercy killing. The resistance to euthanasia, on the other hand, is better substantiated with secular arguments, as I hope has become clear. There can be situations, then, where a person has no choice but to act because they are called upon to do so out of love. Love can make people break the law, and I would defer to that reasoning. The crucial point here is that, as an act of love in the individual situation, it cannot be subjected to a set of rules. Love cannot be measured and weighed or graduated. It cannot be legislated for, and it cannot be included as a condition, as it cannot be guaranteed, ensured or demanded. It cannot be institutionalized and cannot be incorporated in a statutory text as a section of law or as a condition that must be met. Can a legislative text contain a clause like: ‘Euthanasia may be carried out if done out of sufficient love’? A person who assists with suicide or performs euthanasia has to weigh his or her action against the knowledge that it is illegal and punishable. Real mercy killing does occur but is very rare. In the vast majority of instances, it has been judged leniently according to the circumstances. It has led to suspended sentences, for example.

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I  would rather live in a society that judges leniently according to the circumstances than a society that has institutionalized killing, maybe because the law has been generated on the basis of thorny isolated cases (cf. p. 53). Such isolated cases attract all the attention in the debate. Mankind has always described their existence with an evocative narrative. But focusing on the individual narrative can be an obstacle to being able to think congruently. In the matter of euthanasia, it is as if those individual narratives are sometimes given a kind of precedence. A tale of suffering and deliverance from suffering is convincing in its own right, because that suffering is feared, and deliverance is seen as the good, even if it is achieved by eliminating the sufferer. And that can also be described as a free choice, in which an accomplished writer avoids the nuances that might provide a breeding ground for doubt. Two relatively new novels are good examples:  Me Before You by Jojo Moyes (2012) and The Universe versus Alex Woods by Gavin Extence (2013). Both cases involve a difficult life situation for a person to whom the book’s protagonist is attached. In both cases the person exercises their right to self-determination and receives help with suicide in Switzerland, which – it is said indirectly – has more humane legislation than Britain. The main characters help the person they love, and they respect this person’s right to self-determination. As a reader, I  am fully on a wavelength with this too. I  picture the agonizing situation before me, I understand the death wish; and, as it is described, it is hard not to see the taking of poison as a result of an entirely free choice and as a deliverance. Over the years there has also been a string of films that have used the powerful visual devices available to the medium to show the hopeless

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suffering, the decision to die and deliverance from an onerous life. Examples include director Badham’s Whose Life Is It Anyway (1981) and Amenábar’s The Sea Inside (2004). I think an individual narrative describing the doubt is harder to create. It is rarer, therefore, but a powerful example is Linn Ullmann’s prize-winning novel Grace (2002). The film Silent Heart mentioned on p. 56 is also a contribution to this nuanced approach. A documentary about a Canadian man who had also opted for help with suicide in Switzerland shows that he refuses to drink the poison at the last moment. But here – so I read in the report – ‘the next-ofkin’s hard-nosed caring intervened’: by now there had already been great outlay, a long journey, and it was his decision, after all, and the illness was bad. Another documentary  – if memory serves  – shows a Dutch woman who has decided in favour of euthanasia but, when the appointed day approaches, is seen pacing around restlessly with mounting presentiment and fear. The documentary Death on Request, mentioned on p. 83, also takes this aspect on board, although it is not the intention of that documentary. The individual tale in fiction and film appeals to the modern Westerner, who has assumed ownership of the concept of free will along with history and culture, and primarily sees no limitations to the power of life and death. I myself am a child of my time and culture, and I  share the notion of self-determination. To put it differently, I instinctively feel in harmony with the argument about self-determination, also on the question of euthanasia. I have come to realize that, in the matter of euthanasia, autonomy is in keeping with the concept of duty ethics (deontology) in moral

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philosophy. The individual is irreplaceable and must be respected. I have also realized that my opposition to legalizing euthanasia may, in reality, be based on utilitarian ethics. Will a blanket law benefit the majority? As I have mentioned, there are problems in the Netherlands and Belgium, for example. And problems are also mounting in Canada (p. 95). What becomes the individual’s right can end up affecting a larger majority, and thereby also a given individual. It is even as if society can justify measures targeted at dependent individuals who are suffering and require care on the basis of the ethical duty that can so effortlessly refer to the rare exceptions. I have no doubt that duty ethics appeals more to the modern person than utilitarian ethics. Duty ethics seems to be more in keeping with the egocentric view of life characteristic of our age. ‘What’s in it for me?’ is often the candid message. Utilitarian ethics, on the other hand, has more connotations of cold and sterile quantitative calculations, in which the individual is forgotten. It can be the very opposite, and both ways of thinking are important, therefore. Some reformulation is called for, so as at the same time to make utilitarian ethics about the benefits for the culture and the charitable community we also wish for. The paradoxical thing, you see, is that when that communality between people is forgotten, it can very easily end up taking its toll on the individual, which is precisely what duty ethics commands us to be alert to.

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12 Another possibility

This chapter deals briefly with an alternative to assisted dying, namely, palliative care. This concept has been illustrated by Drs Cavagnaro and O’Brien, who already in 1991 in a letter to the New England Journal of Medicine stated, ‘our present ability to manage most forms of pain associated with terminal illness effectively weakens most of the arguments favouring euthanasia’. St Martin rides into Amiens, and at the town gates he spots a cold, starving beggar. He doffs his cloak, divides it in two with his sword and gives one half to the beggar to wrap himself in. The Latin word for cloak is pallium. The term ‘palliative care’ was formed on the basis of that legend and was first used by the Canadian surgeon Balfour Mount in 1974 in a book on hospices. A cloak is intended to illustrate that the whole patient must be protected, enveloped and blanketed by the treatment – a total care package for body and soul alike. The founder of the principles of modern palliative therapy and hospice treatment is Cicely Saunders. To start with she was both a nurse and a social counsellor, but a patient told her: ‘You must train as a doctor, because it is the doctors who are failing the dying, and doctors will only listen to doctors.’ Aged 33, she then began studying

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to be a doctor. In 1967, after many years of preparation and planning, Saunders was finally able to open St Cristopher’s Hospice in south London. St Cristopher’s quickly became the centre and pattern for palliative treatment methods, and over the years it has received visits from all over the world. Saunders founded and taught palliative medicine. She initiated research into pain therapy and laid down new principles for it. For eighteen years she managed St Cristopher’s Hospice, until she retired from full-time work in 1985. But she carried on teaching and writing and supporting the development of hospice and palliative treatment all over the world. Cicely Saunders was instrumental in creating what might be called the hospice philosophy. She learned it from her patients. When she asked a terminally ill patient to describe her pain, she replied, ‘All of me is wrong.’ That led to her describing the term ‘total pain’. The dying person is afflicted by all-embracing suffering, and it is a physical, psychological, social, spiritual and existential pain. ‘Total pain needs total care.’ The expertise of modern medical science has been of tremendous benefit to palliative therapy. Nowadays relief can be given as never before. That applies to irksome and insufferable symptoms that can accompany a death scenario:  pain, anxiety, fear, muscle tremor, respiratory distress, nausea, itching, hiccups. We do not live in an age like that described by Charles Dickens, for instance, when death could come a’calling amid pain and misery. But even at that time death throes were rare, as had been shown by Dr. William Osler’s study (p. 49).

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In his book ‘Being Mortal’ Atul Gawande describes being called up by an acquaintance (Gawande 2014). It was the husband of his daughter’s music teacher, Peg. She had no children of her own but teaching her music pupils was her greatest joy. Gawande had her in person on the other end. She was terminally ill and told him, in a faint voice, that the doctors had given up doing any more. She herself was completely despondent and resigned. Gawande asked her whether anyone had talked to her about a hospice. They had, she said, but she didn’t see what it could do to help her. Gawande writes: ‘Some in her position, offered “death with dignity”, might have taken it as the only chance for control when no other options seemed apparent.’ But together with her spouse, he suggested that she get in touch with the hospice. Gawande was not her doctor but told Peg that they were sometimes able to help more than she could know. At the same time, he and those around had steeled themselves for the fact that her condition was hopeless, and he had also told his daughter that she probably would not be seeing Peg any more. Peg got in contact with the hospice, and the palliative team set to work with all their professional care and expertise. They managed to adjust her medication and get hold of various technical aids. A miniature miracle happened, and she was discharged, and some days after Gawande’s daughter received a surprising call; Peg asked if she could come over to play. Peg even managed to pull off a pupils’ concert. She lived out her final six weeks doing what she badly wanted to do, before finally dying within a few days. Gawande sums up his thoughts by saying: ‘Assisted living is far harder than assisted death, but its possibilities are far greater, as well.’

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Those working in palliative therapy have been involved in ensuring that ‘a dignified death’ is not merely a beautifying turn of phrase for euthanasia and therefore that advocates of legalizing euthanasia do not have a monopoly on the concept of dignity. The introduction of euthanasia will not give dependent people a free choice. The choice will only be free once we start seriously telling a new story – a narrative that informs why it is worth living as a sufferer and dependent, not just why it is worth dying. A legalization of euthanasia has had practical consequences for palliative care (Wilson et  al. 2007). In Belgium some patients have lost their trust in palliative care services and refuse to be transferred to them out of fear that they would undergo euthanasia. As stated by the Belgian oncologist Beuselinck, ‘Belgian palliative care units, that have opened their doors to patients requesting euthanasia, have seen nurses and social workers leaving the unit because they were disappointed that they could no longer offer palliative care to their patients in an appropriate way. They were upset that their function was reduced to preparing patients and their families for lethal injections’ (Beuselinck 2017). The hospice is laid out and furnished in as homely a fashion as possible. A  plethora of small details are important:  the furniture is from ordinary homes; there are house plants; the dinner service can be patterned, as familiar from private homes; both ambulant and bedridden patients have their own clothes, which can be washed in the hospice’s own washing machine. There is also an in-house kitchen, allowing the patient’s favourite foods to be cooked – by all means by relatives. The dinner plates are small, to match the food

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portions permitted by a patient’s appetite. Relatives can often be accommodated at a hospice and can also receive care. One’s thoughts instinctively wonder, perhaps, whether such a task is almost hopeless or whether too many resources might not be being expended on something that is doomed to end badly, because the life prospects are minimal. But those who are employed at a hospice reply that the task is intensely meaningful. The patients can come to the hospice in the sorriest state. Initially, they may ask to be put out of their misery and for an immediate end to be put to their life. They may be tormented and nauseated. Their fear can be great, a fear that is a multiple of pain, the feeling of being redundant and loathsome to oneself, compounding the nausea and all other symptoms. The idea of palliative therapy is that the patient’s slightest will must be heeded. ‘You mean something until the very last moment of your life, and we are going to help you as best we can, not merely to die in peace but also to live until you do die,’ Cicely Saunders said. Again and again, the miracle happens that pain abates, nausea ceases and a sense of security sets in, because the smallest complaint is heard, because people do not walk past the patient’s door – in fact, because they are experts in palliation. Even those who have been working in hospices for a long time are still amazed. One important facility is the bath. The hospice has special equipment for bathing patients. There is a hoist from the chair or bed to the bathtub, which is adjustable for height. The person’s well-being in the bath can be the first step to the sick person being able to receive care and not feeling abandoned and rejected. The hospice philosophy is to not give up on the patient because one has to give up on the disease. To put it slightly differently, a

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therapeutic aim makes the disease interesting; a caring aim makes the person more interesting than the disease. ‘There’s nothing more to be done’ is an expression of powerlessness, but it is erroneous; there is always more to be done for the person. Why, then, can this care not come under the ordinary hospital service? Most experience shows that it is difficult. Much is done at hospitals, also within caring and nursing, but the aim is fundamentally to heal. Fixed staffing numbers and appropriation levels demand short admission times and technological efficiency, creating a climate characterized by examinations and treatments – all of which is badly needed, and much progress has been made; but in that climate death signals defeat and powerlessness, which the patient will have to share with the practitioner. And ultimately, that will necessarily mean that an ordinary hospital ward is not the ideal place to provide palliative care. There may even be a tendency for hospital patients receiving palliative treatment to feel they have become less ‘interesting’ than when they were undergoing treatment aimed at healing. A friend tells me: My father was a widower for almost ten years and turned 92 in August of the year he died. Earlier that year he had been diagnosed with a cancerous tumour of the oesophagus. On receiving the news, he said: ‘I certainly felt I was being given a final ultimatum there …’. He was a doctor and realized the gravity of the situation. We talked it over, and he was perfectly aware of his situation: that his life was drawing to a close. It was a shocking piece of news nevertheless, and the loneliness I had seen in his eyes would become clear in the period that followed.

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The lump was large, but growing slowly, and he gave the impression of not being that bothered by it. Yet we could see him getting skinnier and skinnier as the summer went by. The doctors suggested inserting a stent inside the cardiac orifice to keep it open. He accepted, but not long after the stent had slipped down into the intestine and was causing him ileus. At that point he was fairly confused at having been hospitalized and being out of the familiar groove. There was a great deal of commotion and many different people around him: shifts changing over, patients six to a ward, visitors, porters, lab technicians taking samples, food trolleys, phones, ward rounds and so on. He had therefore carved out his own little private space beside the bed behind the curtain, where he had his few belongings in an old bag. Ileus is very painful, and indeed it was also taking it out of him completely. My siblings and I were consulted by the doctors before performing any operation. We were very much in two minds but agreed on his behalf. After the operation it was as if the anaesthetic – or else it was the entire situation – had left him completely confused. He was moved to a smaller ward, but ambled round restlessly at night and tried to find his way back to the sixbed ward he was familiar with. Things went back and forth that way for some time. It was a shame for him, as he could not get his act together at all. We realized that it would finish him off. The nurses suggested that a convalescent spell at a hospice might be a good idea, but it called for him  – and us  – to agree entirely why and where it was headed. He had to consent and have palliative treatment from now on.

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As we got into the swing of things, a transformation came over us all. We arrived at the hospice. He was expected, his name was on the door. We were welcomed, shown around and encouraged to make ourselves at home. Here he was not ‘an illness’, but a person with an illness. The time there was one of convalescence for all of us despite the ups and downs. Father became his old self again mentally and once again completely alive to his situation. He ate a little, offered the nurses wine, was able to clown around a bit with them and give voice to his sorrow. We gathered together as a family and his grandchildren had the chance to say their goodbyes. A month or so later he died calmly, one lovely weekday in November – in nature’s way, with everyday life going on all around. It’s a long time ago now, but I regularly think back to that time and am infinitely grateful that we received the care that was so necessary. I  am convinced that the stay at the hospice was lifegiving for all of us. Some years ago Sister Leontine, who is a Catholic nun and trained as both a nurse and a doctor and headed a hospice at St Jan’s Hospital in Brussels, told me that she was occasionally asked by the relatives of a terminally ill patient whether it might not be possible after all to put an end to the misery here and now. They were asking, in other words, for euthanasia of their dear one. On one rare occasion she was overcome by a ‘devilish impulse’, as she said, and she had then replied, ‘I won’t, I can’t and as a doctor I mustn’t. But you can do it yourselves. There’s a pillow, you can use that; I’ll pop out in the meantime – and I won’t tell a soul!’ That impressed upon the relatives what they were

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actually asking of her. She added that she had often experienced how, after the illness had taken its course and the patient had died at the hospice, the relatives would pitch up and say, ‘Thank you, thank you – we didn’t know how much you were all able to do and that there was even so much point to what appeared to us to be just pointless.’ There is a lot of theoretical discussion for and against legalizing euthanasia, but admission to a hospice and palliative treatment – often organized in palliative teams  – is the practical argument militating against such legislation. It is an argument from the real world. As previously mentioned, the vast majority of people are allowed to die peacefully. But for those few where the process is hard going and tough, the gift of palliative skill means the choice need not be between dying in agony and being euthanized. I know that the above description may seem idyllic, even utopian, and of course there will be hard exceptions where patients are neglected and where the final time is not peaceful, but my own experience with palliative teams and the stories I  have heard from relatives of hospice patients form an astonishingly reproducible picture close to the above description. However, I also realize that a practical prerequisite for exerting effective and professional palliative care is that enough hospices and palliative teams are available, but I  would hope that unavailability of palliation should not, in itself, constitute an argument for assisted dying.

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A short conclusion

My concern is that a law on euthanasia will be enacted, motivated by all good intentions, and as the humane answer to human suffering, with reference to the fact that it is what the population wishes. My concern is that it will gradually slip-slide from what is (allegedly) voluntary to also include those who, in the judgement of those around them, are best served by having their days ended. What will happen to our institutions, care homes and so on, which take care of helpless, vulnerable and dependent people? How, I wonder, will those who have such people in their safekeeping view their own efforts and work when their surroundings consider it pointless, suggesting and advocating other possibilities? Arguments against euthanasia can be summed up in the following points: First, the alleviation of suffering by removing the sufferer is a poor (and, in reality, powerless) answer to suffering. Second, on this issue, self-determination becomes largely illusory. Third, deciding which lives are worth living is a very problematic business – a decision that forms the prerequisite for allowing euthanasia to be granted. And that assessment per se can be a threat to the dignity often referred to in this debate. Fourth, I see a risk of the doctor–patient relationship

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being eroded or, to put it another way, both patient and doctor being placed in an impossible situation. We can introduce a law on euthanasia or assisted suicide. We have the power to do so. But will it alter our culture and change the way we look at our fellow human beings? It is not a question whether people have a right to say that they are unworthy. It is a question whether they have a right to be believed when saying it.

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INDEX

active death-help (Danish = aktiv dødshjælp) 14–15 acts / omission doctrine 41–2, 45 Aktion T-4, 156 (see also euthanasia programme) aktive Sterbehilfe (German for active death-help) 14 Andersen, Hans Christian 49, 106 animals 9, 19, 164 Arendt, Rudolph 17, 47, 148 assisted dying also assisted death and assisted suicide 12 (see also euthanasia) and abandonment 3, 95, 104 British Medical Journal 2, 142 Catholic Church 146 debate 1–2, 4, 21, 47, 160, 169 and psychological mechanism 125 assisted suicide 1 13-14, 20–3, 47, 59, 80, 88, 90, 93–5, 116, 120–1, 132–3, 137, 139, 141, 143, 165, 184 (see also physician-assisted suicide) Australia 4, 114 autocracy 89, 90 autonomy 76–9, 82 (see also self-determination) inherent problems of 88–93 and paternalism 96 bathtub example 41, 42, 44–6 Being Mortal (2014 book) 114, 175 Belgium 4, 97, 125, 127, 138–40, 176 Beuselinck, Benoit 50, 68, 93, 112, 176 Binding, Karl 157–8, 160–1, 163 Birkler, Jacob 67, 88

blame 63 Boer, Theo 132, 136 brain’s language 103 Canada 4, 95, 163 cessation of treatment 15, 35–8, 40–2, 82–3, 146 charity 168 Chesterton, Gilbert Keith 48 coffee-euthanasia 135 compassionate killing see mercy killing completed life, also tired of life 129, 136 continuous sedation see terminal sedation convenience killing 126 cryptothanasia 97 Danish Council of Ethics 5 death 39–41, 47, 49–52, 55–7, 83, 89 control of 96 decision of 79 and destiny 17–20, 47, 115 and dignity 147 and euphemism 49, 155 Death on Request (1994 documentary) 83–7 Death with Dignity Act see under Oregon Dent, Bob 26 deontology see duty ethics destiny 17, 20, 47, 115, 125 Dignitas 137, 147 dignity 147–51, 153–4, 160, 162, 183

194

194

Index

dilemma 12, 52, 62, 69, 168 discontinuation of treatment 27, 83 (see also cessation of treatment) doctor-patient relationship 10, 44–6, 109, 111–12 and euthanasia 83, 85, 154, 183 lengthy 134 double effect (doctrine, principle) 31–3 Dutch upper house 48, 163 duty ethics 170, 171 duty to die 79, 94 End of Life Clinic 134 eugenics and racial hygiene and social Darwinism 156 euphemism and death 49, 155 and euthanasia 157, 161 the Grim Reaper 155 European Parliament 161, 163 Eurotransplant 144 euthanasia 55, 183 (see also assisted dying) and abandonment 111 active 9, 11–12, 15, 27, 34–8, 93, 125 arguments 2, 21, 23, 38, 52, 59–97, 138, 141–2, 145–6, 154, 164–5, 170, 173, 181, 183 benevolence 127 British Medical Association (BMA) 119, 137 children 134, 138, 158, 160 Christian outlook 145 compassion 60, 92, 156, 158 and compulsion 81, 93 debate 5, 11, 31, 59, 120, 126, 156–7, 165 definition 12 dementia 60, 132–3, 136, 141 diagnosis 140

documentary 83–7, 170 dying with dignity 112 ethically permissible 167 and extreme situations 53 good death 23, 67, 155 guidelines 3, 127 and handicapped people 96–7, 130, 156, 159–60 hidden also cryptothanasia 97 humane answer 11, 67, 183 idealisation of 66 involuntary 12, 14, 97, 121, 160 and love 118, 168 and medical technology 47–8 mentality 93, 113, 140–2, 148 (see also normalisation of) non-voluntary 12, 14, 139 (see also life-termination acts without explicit request) normalisation of 113, 140, 142 (see also mentality) and organ donation 143–4 and pet animals 164 and pressure 78, 82, 85, 113, 130, 133 and power 19, 83, 115, 141 possibility of 1, 67, 79, 81, 93, 111, 113, 131 programme 156–7, 159 psychiatric patients 132, 139 religious arguments 146, 168 Review Committee 133, 135 and suffering 23, 59–61, 67–8, 92, 127, 136–9, 142, 158 surreptitious 32 unreported 139 voluntary 12, 14, 23, 26, 60, 92–3, 97, 130, 138–9, 158, 160, 164, 183 Fenigsen, Richard 80, 97, 112 free will 10, 23, 77, 151, 170 (see also self-determination)

195

Index

Gawande, Atul 114, 132, 175 general practitioners also general practice 48, 112, 118, 137 geriatricians 137 Germany 141 Gnadentot see mercy death Good Samaritan the 149 Grace (2002 novel) 170 Groningen Protocol 134 guilt 63 Hartling, Lene 53 heart’s language 103 Heath, Iona 3, 11, 81, 142 Hippocrates 1, 48 Hoche, Alfred 157–8, 160–1, 163 hopeless and hopelessness 56, 62, 79, 109, 112, 136, 169 hospice 33, 50, 173–7, 180, 181 hospice philosophy 50, 174, 177 House of Lords 81, 126 Huxtable, Richard 12, 167 Ich klage an (I accuse) (1941 film) 159 indignity 147, 149, 153 intention 38, 44, 46, 127, 183 inviolate life 2, 145 (see also life as a gift) irrational language and irrational thinking 99, 103 (see also rational language) Joode, Kees de 83–7 Kamisar, Yale 80 Keown, John 81, 93 Kevorkian, Jack 143 Krankenmord der, see Aktion T-4 LAWER see life-termination acts without explicit request

195

lebensunwertes Leben, see life unworthy of life legalization also legalize 1–5, 13, 21–24, 34, 59, 63, 78–80, 95–6, 111, 125– 6, 129, 130, 146–8, 163–4, 167, 181 lethal injection also lethal medicine, lethal medication and lethal poison 8, 12, 14, 26, 40, 68, 115, 119–20, 176 life as a gift 2, 145 (see also inviolate life) life unworthy of life 157, 160, 161 life-termination acts without explicit request (LAWER) 139 (see also non-voluntary euthanasia) Me Before You (2012 novel) 169 medical science 47, 174 medicide 143 mercy death and mercy killing 12, 62, 67, 92, 126, 155–9, 168 minors 60, 143 moral philosophers 42, 103, 120 morphine 32–4 Nazi card 156 Nazi draft law 158, 163 Nazi Germany 156, 159 Netherlands the 3–4, 48, 96–7, 125, 129, 132, 136 New Zealand, referendum 24, 25 Nitschke, Philip 13, 26 numinous arguments see solemn arguments Oijen, Wilfred van 84 opinion polls also poll, questionnaire and survey 2–4, 20, 22–3, 32, 34, 77–8, 96–7, 118–9, 137, 141–2 Oregon and Death with Dignity Act 13, 14, 93, 94, 147

196

196

Index

organ donation euthanasia 143–4 Osler, William 49, 174 pain drip see morphine palliation also palliative care, therapy and treatment 33–8, 40–2, 54, 95, 173–8, 181 palliative sedation see terminal sedation palliative sedation see terminal sedation PAS see physician-assisted suicide passive death-help (Danish = passiv dødshjælp) 15, 35 passive euthanasia 12, 15, 27, 34–7, 143 paternalism 96 philosopher-assisted suicide 121 physician-assisted suicide (PAS) 1, 13, 78, 95, 116, 129 poll see opinion polls, questionnaire and survey power 17–19, 45, 141 over death 39–41, 83 powerless also powerlessness 19–20, 39, 65, 110, 167, 178, 183 quality of life and life-value 38, 60, 66, 80, 91–2, 154 questionnaire see opinion polls, poll and survey Rachels, James 42 racial hygiene see eugenics rational language and rational thinking 99, 102–3, 109 (see also irrational language) RCGP see Royal College of General Practitioners redundancy, feeling of and feeling of being redundant 104, 117, 153–4, 177 (see also superfluous) referendum 24

Regional Euthanasia Review Committee (RTE) see euthanasia Review Committee right to die 79, 94 Robdrup case 33 Royal College of General Practitioners (RCGP) 3, 118–9 sanctity of life 2 Saunders, Cicely 173–4, 177 secular arguments 2, 168 self-determination 17–18, 59–60, 76–79, 88–90, 92–3, 169–70, 183 (see also autonomy) and animals 164 and compassion 60 ideology of 96, 149, 157 principle of 138 selfishness 102 Sidenius, Katrine 91, 99–105 Silent Heart (2014 film) 56, 170 Sister Leontine 180 slippery slope also slippery slope argument 125–44 social Darwinism see eugenics solemn arguments also numinous arguments 2, 145, 146 sorrow 102, 105–6 St Christopher’s Hospice see hospice suffering 59 alleviation 35, 147, 183 answer to 2, 11, 67, 142, 183 and assisted dying 10–11, 21 compassion 50, 60 deliverance 169–70 and euthanasia 23, 59–61, 67–8, 92, 127, 136–9, 142, 158 fear of 61, 78, 169 and indignity 147 problem of 21 relief 35, 112 and terminal illness 142

197

Index

unbearable 1, 61–2, 67–8, 103 suicide 90 superfluous, feeling of being 79, 113 (see also redundancy) survey see also opinion polls, poll and questionnaire 34, 49, 66, 96, 119, 137 technology 1, 47–9 terminal sedation 51 Termination of life on request and assisted suicide act (2002) 13 The Sea Inside (2004 film) 170 The Universe versus Alex Woods (2013 novel) 169 thrift-euthanasia 143 ticking bomb argument 52

197

tired of life see completed life total pain 174 treatment cessation see cessation of treatment Twycross, Robert 38, 50 unworthy 79, 91, 149, 153–4, 157, 160–1, 184 utilitarian ethics 171 value of life see quality of life vulnerability 18–19, 105 Whose Life Is It Anyway (1981 film) 170 World Medical Association (WMA) 4, 13, 116

198

198