"This book would be a most welcome addition to the library of any person interested in the debate on euthanasia. Somerville succeeds in discussing openly and honestly both sides of the euthanasia and physician-assisted suicide debate.." Saskatchewan Law Review

Margaret Somerville is Gale Professor of Law, professor in the Faculty of Medicine, and founding director of the McGill Centre for Medicine, Ethics, and Law at McGill University. She is also the author of The Ethical Canary: Science, Society, and the Human Spirit.

Table of contents and prologue


Acknowledgments
Prologue

PART ONE: EUTHANASIA AND THE SEARCH FOR A NEW SOCIETAL PARADIGM
1 Euthanasia, Genetics, Reproductive Technologies, and the Search for a New Societal Paradigm

PART TWO: EVOLUTION OF THE EUTHANASIA CONTROVERSY
2 Should the Grandparents Die? Allocation of Medical Resources with an Aging Population
3 The Song of Death: The Lyrics of Euthanasia
4 "Death Talk" in Canada: The Rodriguez Case
5 The Definition of Euthanasia: A Paradoxical Partnership
6 Legalizing Euthanasia: Why Now?
7 Euthanasia by Confusion
8 (a) Guidelines for Legalized Euthanasia in Canada: A Proposal by Torsten 0. Nielsen
(b) Guidelines for Legalized Euthanasia in Canada: A Rejection of Nielsen's Proposal
(c) Guidelines for Legalized Euthanasia in Canada: A Response, to Somerville's Rejection by Torsten 0. Nielsen
(d) Guidelines for Legalized Euthanasia in Canada: A Response to Nielsen's Response
9 Executing Euthanasia: A Review Essay
10 Why Aren't Physicians Interested in the Ethics and Law of Euthanasia? A Conference Report

PART THREE: UNTREATED PAIN AND EUTHANASIA
11 Pain and Suffering at Interfaces of Medicine and Law
12 Ethics, Law, and Palliative Treatment and Care: The Dying Elderly Person
13 The Relief of Suffering: Human Rights and Medicine
14 Death of Pain: Pain, Suffering, and Ethics

PART FOUR: RESPECT FOR DYING PEOPLE AND EUTHANASIA
15 (a) Death at a New York Hospital by Engelbert L. Schucking
(b) Searching for the Governing Values, Policies, and Attitudes: Commentary on "Death at a New York Hospital"
16 (a) Human Dignity and Disease, Disability, Suffering: A Philosophical Contribution to the Euthanasia and Assisted Suicide Debate by Sylvia D. Stolberg
(b) Unpacking the Concept of Human Dignity in Human(e) Death: Comments on "Human Dignity and Disease, Disability and Suffering"
17 (a) Prothanasia: Personal Fulfilment and Readiness to Die by ConstantineJohn Falliers
(b) Taming the Tiger: Reflections on "Prothanasia: Personal Fulfilment and Readiness to Die"
18 Debating A Gentle Death: A Review Essay

PART FIVE: EUTHANASIA IN THE "PUBLIC SQUARE"
19 Euthanasia in the Media: Journalists' Values, Media Ethics, and "Public Square" Messages
20 Euthanasia and the Death Penalty

PART SIX: ETHICAL AND LEGAL "TOOLS" IN THE EUTHANASIA DEBATE
21 Labels versus Contents: Variance between PhiloSophy, Psychiatry, and Law in Concepts Governing Decision-Making
22 Human Rights and Human Ethics: Health and Health Care

Epilogue
Notes
Permissions and Place of Publication
Index

Copyright Notice: Death Talk by Margaret Somerville ? 2001 by McGill-Queen's University Press. All rights reserved. This text may be used and shared in accordance with the fair-use provisions of Canadian copyright law, and it may be archived and redistributed in electronic form, provided that this entire notice, including copyright notice, is carried and provided that the McGill-Queen's University Press is notified and no fee is charged for access. Archiving, redistribution, or republication of this text on other terms, in any medium, requires the consent of both the author and McGill-Queen's University Press.


Prologue

We all need to engage in "death talk" if we are to accommodate, with some degree of comfort, the inevitable reality of death into the living of our lives. And we must do this both as individuals and as members of society. Until the last few decades, most of us participated in death talk as part of our religious practice. Today, in industrialized Western societies, the euthanasia debate provides a prominent context for such talk. This book contains a collection of papers, which I have written over the last twenty years, on euthanasia and physician-assisted suicide, and the debate that has surrounded these issues.

Death confronts us with terror and aloneness, even if we are accompanied by loving others. We can respond in two ways. In the first, we can take control of death and view it - and life - in a reductionist way. Euthanasia is often a manifestation of this approach. Many advocates of euthanasia, while they value human life and respect it within given parameters, do not view it as having any intrinsic value, mystery, or meaning. Rather, they value human life for what it provides, and believe that, when the human machine deteriorates beyond some point - when we, or others, judge the quality of life as "not worth living" - euthanasia allows a dignified exit from life. One politician of this school of thought (Mr. Jeff Kennett, who was then premier of the state of Victoria in Australia) summed it up in this way: When you are past your "use-by" / "best-before" date, you should be checked out as quickly, cheaply, and efficiently as possible.

This politician's consumer-market-values approach to death - perhaps even seeing the morality of death as being worked out in the morality of the marketplace - can be compared with the approach and attitudes to death captured in a beautifully-bound large book placed on a stand in the non-denominational chapel of an Australian hospice. The messages written in this volume by people - from small children who have just learned to write to spouses whose lifetime partners are dying - capture an intangible reality that I am unable to describe but that can be experienced in reading the entries. The impression I was left with about what human death and dying involves was the polar opposite of the one generated by the politician's remarks.

This reaction opens up the other way to deal with death: to search for meaning in it. People who do so often view human life as having intrinsic value, encompassing a mystery (at least the mystery of the unknown), eliciting a response that contains wonder and awe. They believe that legalizing euthanasia would put at high risk the likelihood that we will find meaning in death, and that this possibility threatens our ability to find it in life. "Death talk" and "life talk" are two sides of the same coin, and the content of these two forms of talk is inextricably intermingled: death talk forms part of life talk and vice-versa. Moreover, we run serious risks as individuals and societies if we fail to balance one with the other. In this book, I want to balance the death talk articulated in the euthanasia debate with life talk and to articulate the harmful impact that accepting euthanasia would have on the latter's content.

One of the great difficulties in the euthanasia debate is that we lack a secular vocabulary that can adequately capture the non-physical - the metaphysical - realities we need to create, protect, and live in if we are to experience fully human lives. Traditionally, we have used the language of religion to create the intangible, invisible, immeasurable reality that is essential to our human well-being, both as individuals and as a society. Often, we still need to employ the vocabulary of that language to capture the dimension of "human spirit" - which we need, whether we are religious or not. The use of this language can cause difficulties for those who reject religion and the supernatural because they see this vocabulary as invoking these entities. But in using this language in a secular context, I do not intend to base my arguments on religion or to rely on the supernatural.

By the human spirit I mean the "deeply intuitive sense of relatedness or connectedness to the world and the universe in which we live." To recognize this dimension of ourselves is to recognize that we are more than "gene machines" and more than just logical, rational beings. We can create this dimension through shared language in the broadest sense of both words. Indeed, one challenge of "globalization" is to find a language and vocabulary that will cross the boundaries of religion and of ethnic and national origin (the boundaries of culture) and capture the profound realities of the human spirit that can give meaning to our lives - and deaths. The euthanasia debate is one important context in which we have an opportunity to contribute to, finding this common human spirit and the shared language that will elicit and describe it.

We are story-telling animals. Some of our most important shared stories are in the form of metaphor, parable, and poetry. We communicate through imagination and intuition as much as reason and cognition. And we can find and communicate certain realities only indirectly. Some kinds of knowledge can be sought only by setting up metaphorical-metaphysical spaces within which we hope to encounter them. This is true with regard to knowledge and wisdom about death.

Setting up a space of that kind depends on having a sense of belonging to a community. Many of us have lost this sense and, consequently, have difficulty finding or entering the metaphorical-metaphysical space we need when we, or those we love, are dying. In facing the circumstances of death, it can be much harder for us than it was for our ancestors to fulfill the need to cry and to laugh through the tears; to come together to share the pain of loss and the joy of memory; and to participate with others in poetry, ritual, and song. Euthanasia is one response to this loss.

Our fear of death might be getting in the way of our ability to see death as a means of finding connection with others, forming community, experiencing transcendence (a feeling of belonging to something bigger than ourselves), and leaving a legacy. These are all means of helping people to experience a "good death." Euthanasia also is connected with our fear of death and of overcoming it, and likewise has the goal of providing people with a good death. But euthanasia blocks our access to a good death through the other ways outlined, which means that we lose important opportunities for experiencing such a death.

We must, to paraphrase the words of an Australian aboriginal elder who was speaking to white Australians, find a "new dreaming" - especially one that can hold us when we are facing death. We must be able to experience belonging to something bigger than ourselves; a sense of hope - a connection with the future; and a sense that we are loved and can love in return. All these feelings are possible for dying people but, probably, only if those who care for and relate to them can also give and accept the experiences that generate them. Calls to legalize euthanasia often reflect a loss of these possibilities for dying people or those close to them - or at least a fear of their loss.

In this book I explore the causes, scope, and impact of the contemporary euthanasia debate. I argue in Chapter 1 of Part One that this debate is part of the search for a new cultural paradigm on which to base the societal structure. This search is also being undertaken in the context of genetics and reproductive technologies. What we do and choose not to do in relation to both the passing on of human life (genetics and reproductive technologies) and the ending of it (euthanasia) will create the metaphysical reality, the sense of meaning, within which we live our lives. We have always used birth and death, the two great "marker events" of human life, as central to our search for meaning.

As long as we humans have been around, we have become ill, aged, suffered, and died, and others have always been able to kill us. Euthanasia is not a new question. But our kind of society has rejected it for over two thousand years. Why, then, has the legalization of euthanasia been seriously considered in industrialized Western societies within the last twenty years? These are the same societies that have made astonishing advances in the ability to relieve pain and suffering. Not all of us agree on the reasons, though most of us admit they are multiple and complex. These factors are explored in Chapter 6, "Legalizing Euthanasia: Why Now?" one of several chapters in Part Two on the evolution of the euthanasia debate.

One reason the euthanasia debate might have emerged now in industrialized Western countries is that recent extraordinary medical successes have expanded our life span and changed the diseases from which we are most likely to die from acute ones (which killed us quickly) to chronic ones (which do not). In general, people who die of chronic diseases cost the health-care system much more than those who die suddenly. We are also aging populations, which means that more of us are likely to die of chronic diseases. In short, our medical successes benefit us, but they also present us with their cost and the need to recognize our inability as a society to provide all the health care that might benefit everyone who wants it. It is, and should be, very difficult to face someone whom we know we could help with very expensive medical treatment and refuse access to it. Recently, the connection between euthanasia and the saving of health-care resources has been articulated in public forums, although the topic has always been discussed privately. In Chapter 2, I address the question, "Should the Grandparents Die?"

The reasons behind calls for the legalization of euthanasia are complex, as is the debate itself. Consequently, we need to be aware of the ways in which the case for one side or the other is promoted. The case for legalization has been promoted, for instance, through confusion with other acts or situations that do not, in general, raise ethical and legal difficulties. This confusion must be identified and carefully explored. I aim to demonstrate in Chapter 7, "Euthanasia by Confusion," that such an investigation could make us see some of the arguments differently. Another reason given for the need to legalize euthanasia is that it is necessary to relieve pain. In Part Three I discuss pain and pain-relief treatment, and their relation to euthanasia. We have been grossly negligent, even malevolent, in our failure to treat pain. And, looking back, I find it difficult to imagine how we could have been so inhumane. Increasing sensitivity to the pain of others, especially on the part of health-care professionals, has been a major advance of the last twenty years. This awareness is particularly true with respect to those who are unable to communicate their pain easily, whether because they are too young, too old, or of a different cultural or linguistic background.

Because euthanasia is a topic of debate, it matters how we carry out that debate. Often this debate centres around what is required to respect dying people. The chapters in Part Four deal with that issue. Some of these chapters consist of my responses to others' contributions, some of which were, in turn, responses to mine. They also include my reviews of two books written by advocates of legalization.

The two chapters in Part Five deal with euthanasia in the "public square." Much of the euthanasia debate is carried out in the mass media. Consequently, journalists' values, media ethics, and the messages that are conveyed to the public are important considerations.

Finally, in Part Six, I examine some foundational concepts in health ethics and law that are relevant to the euthanasia debate. Chapter 21 explores some of the concepts that govern decision-making concerning medical treatment at the end of life - autonomy, self-determination, competence, and voluntariness. The approaches taken to these concepts in law, psychiatry, and ethics are compared and contrasted.

In exploring euthanasia, we need to undertake a broader analysis than one based merely on ideas that are familiar to people living in an industrialized Western democracy. Human rights was one of the most important global concepts of the second half of the twentieth century, and, in recent years, human rights in health and health care have been a focus of attention. Human rights is not, however, a universally accepted concept in all circumstances - in part because the language of "rights" can seem too Western and too legalistic to some other societies and cultures. We have always recognized that human rights necessarily encompass human responsibilities, and yet, in the West, we have been nervous of expressly naming the latter for fear they could be used as instruments to deny human rights. Governments might argue that human rights depend on fulfilling human responsibilities as defined by the state. In Chapter 22, on human rights in health and health care, I identify a concept of "human ethics". This concept is not meant in any way to detract from the importance of human rights. Indeed, the contrary is true. The idea is that human ethics might be a more neutral and a more universally acceptable term than human rights, at least that term standing alone. In short, human rights and human responsibilities both express the concept of human ethics - and it expresses them; they are interchangeable. Adopting the concept of human ethics would mean that, even if a state does not recognize human rights (legally enforceable claims of individuals or groups against the state), it would still be bound by fundamental principles of human ethics. One of those principles, I believe, is that, except in essential self-defence, we must not kill each other - not even for reasons of the utmost mercy and compassion. Consequently, euthanasia would contravene the requirements of human ethics.

The euthanasia debate has much to teach us. Those who oppose euthanasia might wish that the debate had never emerged, yet, provided the outcome remains that euthanasia is prohibited, the net result of this debate might be beneficial. We have already learned much. We know, for example, that people who want euthanasia have lost all hope. When we are terminally ill, by definition, we cannot, apart from a miracle, hope for long-term survival. Yet there are things we can still hope for - to see a loved person, to see the next sunrise and hear the dawn chorus of birds, to cuddle a kitten or pat a friendly dog. Hope is our connection with the future, and that future need not be distant to play its essential role in allowing us to experience hope. Hope is our connection with life and with the continuation of life - even when we know we will die (which is true for most of us for most of our lives).

Euthanasia confirms the power of death over hope, of death over life. It fails to recognize the great mystery that allowing death to occur, when its time has come, is an act of life. Euthanasia is an act of death. There is a vast difference between natural death and euthanasia. In our often unsubtle, un-nuanced, very physically oriented, non-metaphysically sensitive world at the dawn of a new century, many of us are failing to recognize how some deaths, and some forms of death, are compatible with life and hope, but others, especially those resulting from euthanasia, are not. It might be that in less sophisticated times, certainly in less scientifically sophisticated ones, we comprehended this distinction through our intuition. We knew through true simplicity.

Often, when we gain knowledge, we move from true simplicity to a chaos phase in which we find it difficult to structure our new knowledge and to formulate appropriate responses. It is only when we can structure the chaos to understand the deep roots and complexities involved in what we do, and the symbols and values affected, that we can make decisions on an adequate and comprehensive basis. These decisions are often similar to those made on the basis of true simplicity, but the resemblance is superficial. These decisions are based on apparent simplicity, which comes with deep understanding.

I believe we have moved from a stage of true simplicity concerning how our societies should handle human death to one of chaos, which is the context of the euthanasia debate. We should now move to a stage of apparent simplicity in which we will recognize the complexity and mystery of death, which exactly mirrors the complexity and mystery of human life. Our decisions at this third stage should be ones that respects the mystery of our humanness, while recognizing the suffering of terminally ill and dying people and our most serious obligations to relieve it. This transition requires that we respect death, and that, in turn, requires that we live out our own lives to their natural ends. In saying this, I do not mean to romanticize or glamorize death. On the contrary, we need to be realistic, to accept that death can be horrible. Rather, I am proposing that we accept and respect death, despite the horror and fear it can engender, because if death has no meaning, life has no meaning. We do not need to be religious or to believe in the supernatural to adopt the concept of respect for human life and human death proposed here. We do, however, need to recognize a "human spirit" - that it can be damaged or even annihilated, and that we have obligations to protect it. We should reject euthanasia because it is incompatible with fulfilling these obligations.

Death is one of the oldest focuses of human fear, curiosity, and philosophical debate. It is the last great act of life. It must remain so, if we are to live fully human lives and pass on the capacity and opportunity for doing so to our descendants. We are not, and never should be, supermarket products to be checked out by others according to a "best-before date." All of us need to see ourselves as having one of our hands in the earth - to which we will return - and the other reaching up to the stars - from which, contemporary cosmologists tells us, we probably came. Respect for human death also matters greatly to society: it is fundamental to maintaining a high ethical tone. We must not let our justified fear of death overwhelm our sense of the mystery of death and of life. If we do, the loss and harm to each of us and to society will be beyond our present imagining.