A Good Death: An Argument for Voluntary Euthanasia
Dr Rodney Syme, Melbourne University Press, 2008.
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Rodney Syme was born into a well-off medical family and brought up in the conservative surroundings of Melbourne’s establishment. He was educated at a protestant private school and trained as a specialist urologist. His medical training influenced him to reject the metaphysical trappings of religion, but he retained the enlightenment values imbued by family and school. Specifically he identifies compassion, tolerance and inclusiveness as values to which he subscribes.
The value of inclusiveness manifests itself in Dr Syme’s attitude to those who have sought his advice over the years. He believes that the word ‘patient’ tends to place those seeking help into a dependent role, compromises their autonomy and places the doctor in a dominant role. Doctors, he believes, should advise rather than direct. This is so particularly in the case of the terminally or hopelessly ill where illness is not just an affliction of the body, but of the whole person.
In A Good Death Rodney Syme discusses some of the cases of terminal illness that he has been involved with over many decades of medical practice. He relates his early faltering, self-questioning, professionally cautious approach to those who want to end their lives. This professional hesitancy evolves into a more robust and confident public grappling with the issues that arise from his attempts to help those who are dying. Syme is strongly moved to help those who want to die without enduring a humiliating loss of autonomy and independence; who want an end their intolerable suffering; who want to avoid burdening their family with futile but demanding care; who want, in Syme’s phrase, a good death.
A Good Death outlines the effects of the various diseases that afflict the people who have turned to Syme for help to end their lives. They have turned to Dr Syme because nowhere else is the help they want sanctioned by society. Dr Syme points out that not all people who want to end their lives because they suffer a terminal disease are in the same boat. Perhaps they share a condition where further medical intervention is futile and their suffering cannot be alleviated by available palliative care, but their options and choices differ. Some are privileged enough to know doctors who will covertly help them to die or who have the resources, financial or otherwise, to exercise at least some degree of choice in end-of-life decisions. Others are not so fortunate and are condemned to circumstances they do not want. These circumstances vary, sometimes they entail nursing home dependency where their deaths are ‘medicalised’ – they are kept alive with modern drugs and medical procedures. In some instances they are drugged into unconsciousness (pharmacological oblivion) and more or less stay in that state until they die.
Dr Syme’s outrage at the treatment of these people; of the overriding of their autonomy; of the paternalistic coercion involved and of the lack of rational arguments or cogent reasons for such destructive social norms is meted out in considered prose. Dr Syme is careful to say exactly what he intends and does so with the objectivity and calm, with the thoroughness and clarity that one expects from a person not only trained in a demanding scientific discipline, but also by an individual who has many years of hands-on experience in the sometimes harrowing processes of counselling and assisting those who are dying.
A recurring theme of Dr Syme’s book is that those who want physician assistance with their dying and who are unable to get it often resort to suicide. These suicides can be very nasty affairs and include hanging, shooting, gassing, jumping from heights or in front of trains and so on. Such desperate measures are often uncertain in outcomes and impact adversely on others in the community. Dr Syme is appalled at these alternatives as much as he is with covert practice that provide assistance but generally without counselling, without second opinions, and without openness.
Dr Syme is also trenchantly critical of palliative care specialists who refuse to be honest and consistent about the shortcomings of palliative care. The fact is that palliative care cannot help everybody, and in failing to provide in principle support for rationally justified strategies of hastening death palliative care can do much harm to individuals. Palliative care may not only prolong an individual’s suffering (thus harming him or her), but also violate the essential dignity of individuals and affront their family and friends as well. As a community we are very reluctant to face the realities that both living longer and advances in medical technology have delivered to us. Rarely now is there a death that unqualifiedly can be described as ‘natural’.
The primary responsibility of the doctor in relation to terminal illness, according to Dr Syme, is to relieve suffering and, where that suffering is intolerable, to hasten death if requested. A guiding principle here is to provide individuals with control of their own lives essentially by prescribing drugs that enable them to kill themselves quickly and painlessly. But, there are difficulties that may justify direct assistance by those physicians who wish accede to requests to hasten the death of those who can no longer bear to remain alive. These difficulties arise in those cases where individuals live beyond the ability to self-administer drugs that would end their lives.
I should make it clear that in this book Dr Syme by no means argues carte blanche for euthanasia. He is very particular to restrict his arguments for legal reform to a very narrow band of those who might avail themselves of physician assisted death. He also is at pains to show that a small step towards enabling medically assisted death would not lead to a slippery slope as some have argued. He here draws on the evidence from the Netherlands and Oregon State in the US where physician assisted death under stringent conditions has been legally available for some years. Dr Syme defines euthanasia as ‘An action taken by, or at the request of, a rational, fully informed individual, whose intention is to be relieved of intolerable and otherwise unrelievable suffering, that hastens death in a dignified manner’.
A Good Death is autobiographical, insightful, responsible, and brings a deeply knowledgeable mind to bear on an important individual and social issue. Indeed, at least in one sense it is perhaps hard to think of any other issue that is more important than how we die since dying, perhaps ironically, is a part of how we have chosen to live our lives. And, what sort of life we ought to live has been the concern of moral philosophers since Aristotle.
Dr Syme draws some important distinctions in his book. He distinguishes between terminal illness and hopeless illness and his discussion here is valuable. He distinguishes between different kinds of suffering and identifies ‘existential’ suffering as suffering that deserves relief just as much as physical pain. Existential suffering can be worse in cases of hopeless illness than in cases of terminal illness. This is so because those with a hopeless illness do not know how long they are likely to suffer whereas those with a terminal illness can be provided with a pretty good idea of the length of time they have to live. Uncertainty, then, contributes to existential suffering.
Also of interest in A Good Death is Dr Syme’s long running and troubled relationship with the Coroner’s Office characterised by the possible ‘overworked and under funded’ Coroner failing to give clear determinations on the deaths that Dr Syme reported. Dr Syme makes out a good, actually, I think, an unanswerable case, for law reform so that doctors can be clear about where they stand and can fulfil their professional duties without fear of their conduct becoming a target under the Crimes Act.
This book, marked by its empathy and good sense, makes reading about death as enjoyable an experience as that topic allows. The case studies are recounted with great sensitivity. And, Dr Syme recognises people’s courage as much as their despair. A Good Death provides readers with a context from which their own views about euthanasia may be formulated. Yet, it is hard to see how one might disagree with Dr Syme’s conclusions unless one is blinded by prejudice, ignorance or belief in God as the only decision maker in how we die.
It is a remarkable feat of uncompromising determination and great good will – perhaps another value imparted by his protestant upbringing – that Dr Rodney Syme has been able to persist over decades in his quest to provide us all with the option of dying with dignity. That alone makes A Good Death a book deserving to be widely read.
Dr Ralph Blunden
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Remember Me, Mrs V?
Tom Valenta, Michelle Anderson Publishing, 2007.
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Mother of three, Marie Valenta, was fifty-four when diagnosed with Alzheimer’s disease in early 2003. The former primary school teacher had rarely experienced a day’s illness before this shattering diagnosis. For the first four years after diagnosis, her husband, Tom, became her primary carer. In his book he describes the daily agony of seeing his wife slowly succumb to this cruel, degenerative disease. He also describes the impact on him and his three adult offspring who see their mother transform from a fiercely independent and highly competent woman to a totally dependent, child-like person.
In 2006 Marie was diagnosed with depression and paranoia and required professional carer support. By the end of the year Tom gave Marie up to a nursing home which he saw as his final act of capitulation and failure. He tells not only his own very personal story but the deeply moving experiences of thirteen other carers who have travelled similar journeys.
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Medically Assisted Death
Robert Young, Cambridge University Press, 2007.
The author of this book, Dr Robert Young, is a former Reader in philosophy at La Trobe University, Australia.
In this review I will outline the form and content of Dr Young’s wonderful book, but I will not be challenging any of his arguments or conclusions since I find myself largely in agreement with them. Yet, a characteristic of the book is that Dr Young draws attention to further literature that discusses issues in opposition to his own preferred position. Even those who disagree with Dr Young’s conclusions will find guidance in this book to sources more congenial to their own philosophic leanings. Dr Young has a disquieting ability to both be gentle in the way he deploys arguments and to be uncompromising in the relentlessness of his logic.
Philosophy is notoriously difficult in its professional guise. Medically Assisted Death is unusual in its sensitivity to the reader. Dr Young takes enormous care to at all times inform the reader of what he is doing, why he is deploying certain arguments or discussing certain propositions and consistently throughout the book he summarises what he has done. The topic demands the reader’s concentration, but there is nowhere the non-professional philosopher will find a more accessible account of the topic. This is not to say the book is without rigour, as it certainly has that. It is to say that Dr Young has reflected on the topic of voluntary medically assisted death for many years and brings his meticulous analytic mind to bear on it in such a way as not only to provide lucidity, but to give the book a certain aesthetic dimension through the use of language that is elegant, succinct and precise. There is not a word out of place in Dr Young’s book and none that need to be added.
Medically Assisted Death is, in effect, a connected series of essays on the central issues relevant to the topic of physician-assisted dying. Yet the book is entirely coherent and each chapter or essay forms a necessary part of the case that Dr Young argues. It will be useful here to provide a list the book’s chapters:
- Chapter One: Introduction
- Chapter Two: A case for the legalisation of medically assisted death
- Chapter Three: Medical futility
- Chapter Four: Physician-assisted suicide
- Chapter Five: The sanctity of human life
- Chapter Six: Killing versus letting die, the doctrine of double effect, and palliative care for the dying
- Chapter Seven: Professional integrity and voluntary medically assisted death
- Chapter Eight: Competence and end-of-life decision making
- Chapter Nine: Advance Directives
- Chapter Ten: Voluntary medically assisted death and slippery slope arguments
- Chapter Eleven: Non-voluntary euthanasia
- Chapter Twelve: Concluding remarks
There is an extensive list of references and the volume is well indexed.
Given that my own post graduate research concerned professional ethics I was particularly interested in Dr Young’s essay chapter ‘professional integrity and voluntary medically assisted death’. This is a short piece of writing that should be read by all medical personnel and should be prescribed reading in medical and nursing courses. Dr Young, as in many of his chapter-essays, is at pains to begin with a conceptual analysis of the topic, in this case professional integrity. He writes:
Professional integrity differs from each of personal and moral integrity in that its focus is not on the personal, or even on the moral, nature of the values, standards or principles that the professional is committed to, but on the relationship between those values, standards or principles and the fulfilment of a particular professional role. (p. 114)
Dr Young, in this chapter, (Professional Integrity), argues that physician assisted death is not necessarily in conflict with the values and standards that apply to professional medical ethics, but in many cases is entirely consistent with them. He argues this because,
There has been so much social change since, for example, the formulation of the Hippocratic Oath, that medicine has had to re-conceive itself. It now incorporates the relief of suffering as well as healing, and hence should accommodate physician-assisted suicide. (p. 121, ‘professional integrity’)
He gives here an account of the tension between the autonomy and the self-determination (of the patient) and the professional integrity of the doctor and specialists involved. In this chapter (‘professional integrity’) Dr Young provides an especially nuanced argument. It may be useful if readers mostly concerned with the content of this chapter also to refer to Dr Young’s earlier book (1986) Personal Autonomy: Beyond Negative and Positive Liberty, Croom Helm, London. This is acknowledged as one of the best books written on the subject of personal autonomy.
Dr Young writes in the introduction to Medically Assisted Dying that:
My central thesis is that there is a strong case for legalising physician-assisted suicide and voluntary euthanasia but that it is neither justifiable nor necessary to do so for non-voluntary euthanasia. (p. 1)
The first chapter of the book looks at landmark legal cases and their outcomes and the precedents that they set. Chapter two, ‘A Case for the legislation of voluntary medically assisted death’, provides a compelling case for the legislation of voluntary medically assisted death as the most appropriate public policy for today’s circumstances. Here Dr Young outlines the sort of restraints and protections that are needed to protect the vulnerable.
The threat to the vulnerable is often appealed to by those who oppose medically assisted death. They argue that once we legalise a restricted form of voluntary euthanasia it will not be long before we advance to bumping off the vulnerable (ageing parents, or the disabled, for example). Dr Young devotes a chapter to refuting this slippery slope argument (and slippery slope arguments in general) as well as addressing the problem of medical futility – where further medical intervention in the sickness of a patient will not be curative, but will only needlessly prolong life for those with no reason to live. Related to this theme he also addresses the concept of a reverence for life, or a claim that human life is sacred. Here the arguments are quite devastatingly in support of his thesis.
There are many potential problems involved in legislation that makes it legal for physicians to assist their patients to die. Dr Young writes in his chapter on physician-assisted suicide:
Among the more important concerns specifically raised about physician-assisted suicide are the following: whether it is appropriate to place potentially lethal doses of barbiturates, opioids, and other medication in the hands of the terminally ill; whether medical practitioners may with propriety agree not to play a supervising role at the time when a patient chooses to take a lethal dose of such drugs; whether physician-assisted suicide is of any use to sufferers from severely disabling conditions like multiple sclerosis or motor neurone disease (who would be unable to suicide in the way envisaged in physician-assisted suicide); whether (as opponents of physician-assisted suicide claim) there are available equally efficacious but less contentious strategies – like the refusal of food and fluids – which would enable competent terminally ill persons to end their lives; whether legalising physician-assisted suicide would pose any serious risks to others, especially those who constitute the more vulnerable members of society; and, whether requests for assistance with dying made in the advance of the onset of incompetence by, for example, victims of Alzheimer’s disease, may legitimately by honoured through physician-assisted suicide. (p. 44)
Dr Young considers these problems consecutively and I found his discussion of the supervision of the use of lethal drugs especially pertinent. An important chapter deals with the doctrine of double effect, of the moral differences, if any, between acts and omissions (what we do and what we fail, or choose, to do or not to do). Although this is a good chapter it reworks well trodden ground. Nevertheless, it is a useful addition to the book for the sake of completeness especially given that many people who should read this book will not be familiar with philosophical analysis of acts and omissions.
There is much more to say about this book though I suspect that, given Dr Young’s thoroughness, there will be little of consequence advanced against him. This book is an exercise in practical ethics and, in my view it is an exemplary instance of this genre. No one will come away from reading even a chapter of this book without feeling that light has been cast on the topic. In the best traditions of philosophy Dr Young illuminates his subject. He has done a public service in publishing this book which should be influential in developing public policy.
Dr Young concludes his book with the following:
[T]here is nothing in medical morality or the goals of medicine that precludes offering medical assistance with dying to those intolerably burdened patients who competently request it; that the imminence of death does not inevitably undermine competence; that directives made in advance of death have probative value in relation to a patient’s end-of-life care; and, that the evidence from the couple of jurisdictions where voluntary medically assisted death has been legalised gives cause for confidence that its legalisation will not result in jeopardy to the life prospects of vulnerable incompetent persons. (p. 220)
Would that it were the case that Dr Young’s cool rationality and compassionate, but fair, moral position were more evident in our community. In his book Dr Young does look at the importance of emotions or ‘affect’ as some taxonomies would describe our feeling selves and in this he acknowledges the influence and the importance of this aspect of our (human) nature. This aspect also places Dr Young’s book in the great traditions of Western Moral Philosophy stretching back at least to the moral authority of the incomparable Scottish philosopher, David Hume.
Dr Ralph Blunden
Bad Hair Days
Pamela Bone, Melbourne University Press, 2007.
The title of Pamela Bone’s book Bad Hair Days refers to the loss of hair that patients suffer when undertaking chemotherapy treatment for cancer. Pamela returned from Chad (where she was covering a story for The Age newspaper) feeling sick. She soon became fatigued, lethargic, dehydrated and anaemic and suffered other symptoms including a bout of pneumonia. She was diagnosed as having multiple myeloma, a cancer of the bone marrow.
This book is a personal account of her confrontation with that cancer and her thoughts about ending her own life.
Pamela Bone was a long time journalist with The Age and the book is well written and structured. She recounts the continual tests and medications and the visits to hospital. She writes:
I was to learn what others noted, that nearly all doctors follow a policy of not telling their patients much of the bad news unless or until they have to; what others have called ‘the principle of gradual disclosure’
She ponders what it means to be brave, what courage amounts to and how one loses a sense of control when cancer singles us out from the crowd. She defends the stance she took as an Age leader writer when she supported the invasion of Iraq which, in hindsight, she admits was a folly. She discusses the 2004 tsunami that killed an estimated 23 000 people and how it made her feel. She discusses her atheism.
In an important insight Pamela draws attention to how the world divides when she quotes the writer David Rieff whose mother had a virulent blood cancer:
There are those who can reconcile themselves to death and those who can’t. Increasingly I’ve come to think that it’s one of the most important ways the world divides up. Anecdotally, after all those hours I spent in doctors’ outer offices and in hospital lobbies, cafeterias, and family rooms, my sense is that the loved ones of desperately ill people divide the same way.
Why does death surprise us? She asks.
She briefly discusses alternative medicine (a big business) natural therapies and the power of the mind/will in overcoming illness. All this is done in a conversational tone drawing on her thoughts and experience. She is a sceptic in regard to most things outside modern medicine. But, she writes,
A time will come when I will have to make the choice between allowing this disease to finish me and taking control of my own end.
Bad Hair Days is a worthy contribution to the literature on dying.
Dr Ralph Blunden
Angels of Death:
Exploring the Euthanasia Underground
Roger Magnusson, Melbourne University Press, 2002.
Angels of Death is a fascinating account of euthanasia within the gay community in Sydney, Melbourne and San Francisco. Magnusson, an Associate Professor in Law at the University of Sydney, interviewed many doctors and nurses who have been involved in assisted death and this book provides a rare picture of an ‘underground’ health care practice. Dr Rodney Syme, a pre-eminent figure in the voluntary euthanasia movement in Australia has said that this book reveals, ‘the outrageous behaviour that actually occurs in an unregulated [medical] environment’.
The author provides many insights into voluntary euthanasia, canvassing a large range of issue both ‘for’ and ‘against’ euthanasia. His coverage is very even handed, scholarly and fair.
One of the important aspects of the book is that it focuses mainly on young people dying of AIDS. The doctors involved often have a personal connection with their patients or the gay community more generally and so professional distance and accountability become compromised. As Syme observes, ‘An incredible range of people with little or no training in the issues become involved, using whatever drugs can be cobbled together to get the job done. Even a funeral director is involved!’1. Syme regards this as medical malpractice.
Even granting these observations, legislation that allowed for physician assisted suicide would require a level of bureaucracy that many doctors would find difficult to work under, according to Magnusson. Certainly, the fact that voluntary euthanasia is relevant to other classes of people than geriatric nursing where old and terminally ill patients in great pain are the paradigm example brings many difficult issues into relief.
In dealing with the ‘slippery slope’ argument Magnusson quotes Michael Gawenda:
Past the door marked ‘the terminally ill’ are an endless number of other doors – the chronically ill, the demented, the crippled, the deformed, the chronically depressed, the terminally sad, the heartbroken, the hopeless, the unloved, the lonely, the simpletons, the economically unviable. Not to mention the passageway leading to the doors marked ‘infants and children’.
According to Magnusson, those who oppose the legalisation of voluntary euthanasia argue that such legislation and such practice will transform our ethical sensibility. And, whilst some doctors agree that euthanasia does get easier with time the generally emotive appeal to the slippery slope (such as Gawenda’s above) remains unconvincing to this reviewer, at least in its implied deleterious effect on ethical sensibility. Yes, we do need a shift in ethical sensibility, and anyone who reads Magnusson’s book, I think would agree on the necessity for this. But, that doesn’t mean a sensibility blunted to the worth and dignity of persons. Offering choice to individuals in end of life decisions does not entail a dehumanising ethic where non-consenting persons are euthanized, quite the reverse.
Magnusson throws light on the different attitudes that people have toward assisted death. Many see this involvement by doctors as an extension of care, of meeting the patient’s desires and interests and as a compassionate response to patients. Others see it as an abdication of the responsibilities of carers. Magnusson’s book, Angels of Death, is easy to read and is an excellent introduction to a social issue that will become increasingly urgent as our population ages.
Dr Ralph Blunden
1 Personal communication.
Magnusson, R. S., ‘The Devil’s Choice: Rethinking Law, Ethics and Symptom Relief in Palliative Care’, in Journal of Law, Medicine and Ethics, 34, No. 3, 2006, pp. 559 – 569.
Magnusson, R. S., ‘“Underground Euthanasia”’ and the Harm Minimization Debate’ in Journal of Law, Medicine and Ethics, 32, Fall 2004, pp. 486 – 495.
Magnusson, R. S., ‘Euthanasia: Above Ground, Below Ground’, Journal of Medical Ethics, 30, 2004, pp. 441 – 446.
Killing me Softly: Voluntary
the Road to the
By Dr Philip Nitschke and Dr Fiona Stewart,
Penguin Group, London, 2005.
In Australia, Philip Nitschke is a
household name. Anyone who
has not spent the last few years
hiding under a big rock knows
Philip Nitschke as a passionate
and, some would say, controversial
defender of the "right to
Killing me Softly is written
jointly by Philip Nitschke, a
medical practitioner, and Fiona
Stewart, a medical sociologist.
As Nitschke acknowledges,
Stewart played a crucial role in
the production of the book:
"Fiona took a jumbled mountain
of half finished papers and
ideas and turned them into this
book. It wouldn’t have
happened without her." But the
result is very much Nitschke’s book.
Written in the first person singular, it
is a chronicle of Nitschke’s work and a
(VE) as a
the first chapter
set the record
from his birth in
1947 to the
present, it portrays
an intelligent, goal-determined
person who, rather than being driven
by weird desires, is motivated by a
strong sense of justice and personal
Because VE is not a lawful option,
many patients die in ways abhorrent
to them, suffering more than they are
willing and able to bear.
Besieged by large numbers of
people seeking help and advice, and
convinced that it is wrong to deny the
hopelessly ill the right to die, Nitschke
has devoted the last decade of his life
to finding a way of giving people that
There are two basic ways in which
this might be done: firstly, by working
towards law reform, which would
allow terminally or hopelessly ill
individuals access to direct medical
help in dying; and secondly, by providing
individuals with the practical
means to end their lives, without the
assistance of doctors.
The remainder of the book makes
clear why Nitschke has increasingly
moved from being an advocate for
the first position to being an advocate
for the second.
Given that strong conservative
forces (what Nitschke and Stewart call
the "Unholy Trinity" of Medicine, Law
and the Church) have so far thwarted
all attempts at law reform and are likely
to do so in the near future, Nitschke
now seeks to develop the means
(drugs and mechanical devices) that
will allow individuals to act
Technologies such as
Nitschke’s "Peaceful Pill"
and the "CoGenie", might
one day be effective in
providing a peaceful
death, but any DIY
approach also has its
people wanting to end
their lives can enlist the
help of others, some,
(among them the
sickest and weakest),
will miss out.
Nitschke might reply,
isn’t it better that
some, rather than
none, have access
to a peaceful death?
Then there is the question of
possible abuse. Many people think
the possibility of abuse is a knockdown
argument against Nitschke’s DIY
But this, a defender of Nitschke’s
position might argue, is overly simplistic
– it looks only at merely possible
harms and ignores actual benefits –
the benefits DIY technologies bring to
those who are no longer forced to die
in pain and suffering. Moreover, might
it not also be the case that the very
way in which DIY technologies circumvent
and challenge a law long
overdue for reform will act as a powerful
catalyst for that very reform?
But Killing me Softly is not a philosophical
or legal tome. Rather, it is
written in an easy, almost chatty style;
it is rich in insight, brims with case histories
and historical anecdotes. It constitutes
not only an important chapter
in the history of the Australian right-to-die
movement but, typeset in big
print, it is also a thoroughly good
Dr Helga Kuhse,
Senior Honorary Research Fellow,
Centre for Human Bioethics,
Euthanasia – Choice and Death
Gail Tulloch, Edinburgh University Press, Edinburgh, 2005.
This is a remarkable book. It is comprehensive, exemplary in its structure and is written with very great clarity on a topic that is quite difficult and complex. For an overall account of the debates that arise from the topic of euthanasia there is no better book available. It is a book that should be read by every practicing doctor, nurse, health-care worker, and anyone involved in end-of-life choices.
The book’s structure begins with a range of theoretical issues and concepts: Choice and death; definitions of death including an account of how our definitions have evolved from difficult end-of-life cases. Tulloch, an academic at Griffith University, then moves on to examine a range of arguments and distinctions: The slippery slope argument; voluntary/involuntary, active/passive euthanasia; resource allocation; the individual, the state and a liberal society.
The book moves on at an easy speed to examine death and dying and legislation in America, particularly Oregon State; in England; in the Netherlands and in Australia – all liberal democracies.
At the end of the book Tulloch says:
I have described here some of the conceptual struggles this dilemma [legalising voluntary euthanasia] has posed, as people sought to negotiate the stark choices with the aid of distinctions such as ordinary and extraordinary means of treatment; killing and letting die; acts and omissions; foreseen but unintended effects. I have argued that these distinctions can be useful as a way of justifying and guiding practice, where one alternative of the binary oppositions is seen as acceptable. But in the case of ordinary and extraordinary, killing and letting die, acts and omissions, the boundaries have been challenged, so that the defensive potential blurs. ‘Foreseen but unintended effect’ however, remains intact, and influential – even if contested.
Tulloch explores all these important perspectives in her book along with the classification made by Dworkin – an American philosopher – of patients who are conscious and competent; those who are unconscious and incompetent; and those who are conscious and incompetent. The framing of legislation needs to be clear about what classifications are targeted – especially as a means of reassuring those who are fearful of slippery slopes. The author argues that,
[I]t is better to have legislation that even only partly permits voluntary euthanasia if this reflects the consensus in a particular society and is owned by that society, rather than have legislation forbidding it, which is not clear or not applied.
The author points out that the possibilities suggested by those who use the slippery slope argument to oppose legalising voluntary euthanasia are not supported by the evidence we now have from the Dutch experience. The Dutch who first decriminalised and later legalised voluntary euthanasia have not found that there has been a slide of the kind often envisaged. Partly that is because the Rotterdam criteria that make it legal for a doctor to administer voluntary euthanasia are explicit and comprehensive.
One of the intriguing aspects of the book is the early discussion of criteria for death. In 1989 three questions were posed by the Danish Council of Ethics:
- When does a human being die?
- When is it permissible to stop trying to keep a human being alive?
- When is it permissible to remove organs from a human being for the purpose of transplantation to another human being?
‘What other answer could be given to the third question’ asks Tulloch, ‘if the answer is not “when the human being is dead”’. Opinion about the first question has changed over the years to what is now a focus on cortical death as the defining characteristic. Thus, a human being might be alive in a biological sense, but the personality, the conscious being is dead with cortical death – a very significant step away from the sanctity of life doctrine held to by many of religious faith.
Gail Tulloch’s philosophical perspective is essentially based on the liberalism of John Stuart Mill. Mill holds that the state can only intervene on an individual’s liberty when and if their actions are likely to harm others. Mill held that each individual was the best to judge of what is in their own best interests and opposed paternalistic government. Mill has written,
Neither one person nor any number of other persons is warranted in saying to another human creature of ripe years, that he should not do with his life for his own benefit what he chooses to do with it. He is the person most interested in his own well-being…With respect to his own feelings and circumstances, the most ordinary man or woman has means and knowledge immeasurably surpassing those that can be possessed by anyone else. In this department, therefore, of human affairs, individuality has its proper field of action.
As Tulloch points out, ‘For Mill it is axiomatic that a life cannot be a good life unless it is freely chosen’.
The book discusses many social issues such as advance directives and shows that for many people a dignified death is a stronger motivation for wanting assistance in dying than is pain per se. The book discusses many cases in the countries that it covers all of which are of intrinsic interest. Tulloch writes:
It is surely unacceptable in a civilised society that anyone could be driven to an end that is as sickening, tragic and fraught with risk as that of an 85 year old Perth man, who manoeuvred his wheelchair off a Perth jetty because he was suffering unbearably from throat cancer and could not find a doctor to help him die.
She notes that the Dutch society is one in which it is open, that in cases of physician assisted suicide the patient usually has a long-term relationship with their GP and that nursing home care is free. Thus, a community legalising voluntary euthanasia must ensure the hospice care or adequate palliative care is within the reach of everyone if pressure to shorten life on economic grounds is to be avoided.
This book is highly recommended. It argues a case for the legalisation of voluntary euthanasia and in doing so responds to all the current opposing arguments to assisted suicide. It is little less that a brilliant account and I think that no one could come away from reading this book except with the view that we do need some change in our society in regard to this matter if we are to retain the claim to a civilised and humane community and a medical practice that acts in the interests of patients.
Dr Ralph Blunden
DWDV members may borrow this book from the DWDV library.
The Peaceful Pill Handbook
By Dr Philip Nitschke and Dr Fiona Stewart, self-published 2006.
Note: this book is banned from sale in Australia and New Zealand, but is available on Amazon.
The Peaceful Pill Handbook is an interesting summary of many suicide methods and their history. It also includes many insights into palliative care and various legal issues.
However, The Peaceful Pill Handbook may be a title that would mislead some readers. A handbook usually means a practical, “how to do it yourself” manual; which this book largely is not.
While it does discuss a variety of suicide methods, it does so in rather technical detail. I, a biochemist for ten years, would myself have a great deal of trouble successfully implementing many of them.
The authors aim to help the comparison of methods by creating a Reliability and Peacefulness (RP) Score, which is an amalgam of many qualitative factors for a method, each factor given an estimated value. The resulting value may not be so helpful as two methods could achieve the same score for very different reasons. For example, one method could be strong on reliability but weak on peacefulness, and another method vice versa.
The chapter on cyanide seems to advocate this suicide method, missing important medical opinion that it is likely to be neither quick nor painless.
The book also lacks warnings like simple self-assessment checklists for the vulnerable such as those who are “only” depressed, who should seek professional counsel.
Despite these concerns, and overall, I congratulate the authors and commend this book as a useful addition to stimulate the dying with dignity debate.
Note: DWDV is opposed to the concept of a publicly-available peaceful pill, as noted in our Legislative Charter.
A Social History of Dying
By Allan Kellehear, Cambridge University Press 2007.
Allan Kellehear’s A Social History of Dying spans human history from the Stone Age to the Cosmopolitan Age, travelling through the Pastoral Age and the Age of the City. In covering such a span of time Kellehear condenses his material to a readable length and writes in a way accessible to the average person – he assiduously avoids jargon. But even if one admires his ability to cover such an expanse of time with such economy and precision there are moments in the book that seem to be repetitive. I think that may be characteristic of sociology.
Kellehear situates death and dying in the fabric of social values and norms and shows how our approaches to death and dying are culturally bound. ‘My emphasis’, writes Kellehear, ‘has been on the interpersonal, political and cultural life of the dying experience’ (p.5). Each age presents a peculiar challenge to society according to Kellehear. In the Stone Age the challenge is anticipating death; in the Pastoral Age the challenge is preparing for death; in the Age of the City the challenge is taming death; and in the Cosmopolitan Age the challenge is timing death.
Kellehear thinks our current attitudes toward death and dying are shaped by our social background and animal nature. ‘The reasons why we die as we do today have little to do with individual character and far more to do with epidemiology, religion, economics and the development of individualism as a dominant psychological form among modern human beings’ (p.16).
Each of Kellehear’s sections provides an excellent picture of the life and culture that people lived in and draws on an immense range of scholarly material. To be on top of so much of the literature in several disciplines is a very impressive achievement.
Kellehear writes about the Pastoral Age (p. 79):
In China, Egypt, Africa and Mesoamerica human sacrifice was a major cause of death…in Astec society from AD 1200 to AD 1500 some 20 000 people per year became live sacrifices. They had their chests opened by priests wielding an obsidian knife and endured their hearts being cut out…
So, although some religious persons today oppose voluntary euthanasia, throughout history the religiose have been complicit in massive and cruel human sacrifice of life to a variety of gods. Not only that (p. 79):
Waves of epidemics were often accompanied by waves of deathly recrimination and scapegoating. Without a biological explanation for epidemics, people resorted to blaming each other. A fine-tuning of these searches for social causes of each epidemic led to the burning, drowning, torturing, imprisonment and starvation of inestimable millions…
In the third section of his book Kellehear says that ‘The fatalism and acceptance of death so common in pastoral peoples so familiar with dying and the brevity of life in general were not adopted by longer living, professionally serviced middle classes’ — those who lived in cities.
And so to the rise of modernity: Dementia, AIDS, Neuropsychiatric disorders, Diabetes, Obesity all complicate the social construction of death in the Cosmopolitan Age and all are capital case afflictions. Long life expectancy is a mixed blessing as death in nursing homes or living and dying with dementia are not necessarily good deaths. Kellehear says (p. 207)
In a Cosmopolitan world, long dying does not necessarily create good deaths or well-managed ones any more. Although good and well-managed deaths do occur in abundance in modern hospitals, hospices and homes around the world in contemporary rural and urban contexts of cancer, heart disease or neurological disorders, for many other people long dying produces journeys of dying that are extremely difficult…a third to a half of all nursing home residents die in ‘moderate’ to ‘excruciating’ episodic daily pain…
and quoting Adler (p. 221):
Powerlessness is the rule for nursing home residents. They are ‘placated, serviced to an extent, and patronised, infantilised, ignored, labelled and denigrated’.
Kellehear finally argues that a good death consists in the right timing – the synchronisation of the social and biological aspects of death. To really appreciate this concept you will need to read the book. It is a thorough account of the history of death and has many illuminating insights and is masterly in its lucid handling of difficult and complicated issues. There is an excellent bibliography. It is a highly recommended book, unassuming in its rationality and, despite its topic, exuding a warmth and engagement with the human condition, or more correctly, with the condition of all sentient beings.
In a personal communication from Professor Kellehear he wrote of his book:
There's a lot there and plenty for people to enjoy, ponder, or get annoyed or upset about. I think it covers an enormous amount and ambitious books like that are vulnerable to pot shots of every sort; but I'm happy if people get a general view that our dying is intimately connected to our living in the grand historical scheme of things. Dying today can only be understood in this broader but ironically intimate context…The girl on the front is Ophelia - a famous suicide and I wanted a portrayal of dying that wasn't conventionally and stereotypically a 'deathbed' scene.
Dr Ralph Blunden
Physician Assisted Dying – The Case for Palliative Care and Patient Choice
Edited by Timothy E Quill and Margaret P Battin,
The Johns Hopkins University Press, 2004
This book, edited by a doctor and a bio-ethicist – both giants in their field – is a smorgasbord of argument and information. The contributors are all experts with extensive practical experience from the fields of medicine, philosophy and the law. A refreshing religious view is provided by Bishop John Shelby Spong.
The volume was put together in response to The Case against Assisted Suicide: For the Right to end-of-Life Care (edited by Kathleen Foley and Herbert Hendin).
It is in four parts. The first is titled Perspectives on Mercy, Non-abandonment, Autonomy, and Choice. The second deals with Clinical, Philosophical and Religious Issues about the Ending of Life. The third discusses Open Practice in a Legally Tolerant Environment; and the last, Political and Legal Ferment. There is an introduction and conclusion by the editors.
As a doctor, I particularly enjoyed those chapters written by the medical practitioners. Two were outstanding. Marcia Angell was for many years the editor of the New England Journal of Medicine, America’s best medical journal, and she ran a persistent debate about this issue. Her short chapter deals with the importance of treating pain and discusses existential suffering and the importance of trusting patients. It is full of wisdom. Equally brilliant is Eric Cassell’s chapter on suffering, making it clear that suffering is not simply physical pain and other physical symptoms, but includes the emotional impact of dying and the importance of loss of control. These are things that many doctors are not taught, but I fear that not many doctors will read this book.
Philosophy and bioethics can sometimes seem a little dense to the average person, but the explanation by Tom Beauchamp of the absence of any clear ethical distinction between killing and letting die, in relation to severely suffering terminal patients, is exemplary. Bishop Spong, in his inimitable style, explains how he sees no contradiction between his Christian faith and having some choice and control over how we die.
Part three discusses in detail the experience in Oregon and the Netherlands. It confirms the careful nature of such practice, and clarifies some of the distortions of fact that have occurred in the hands of opponents.
The section on political and legal ferment is very interesting, but largely relates to American law and the American situation. However, Law Professor Charles Barron succinctly analyses “the seven deadly sins of the status quo”, and they are very significant – inhumanity, paternalism, utilitarianism, hypocrisy, lawlessness, injustice, and a deadly risk of error and abuse.
The Editors' conclusion rightly argues for medically assisted dying to be part of palliative care. My only criticism of their conclusion is that they seem to restrict assistance to those who are dying, and do not give any consideration to those with intolerable suffering from an advanced incurable illness.
This book is highly recommended.
Dr Rodney Syme, DWDV Vice-President
To Die Well: Your Right to Comfort, Calm and Choice in the Last Days of Life
By Sidney Wanzer and Joseph Glenmullen, Da Capo Press, 2007.
The authors of this book are very much concerned with making the end of our lives as comfortable, bearable and consistent with our competent wishes as is possible – but they also look forward to what is desirable in terms of changes to medical practice and law that would assist in achieving this goal. The book has many brief and tragic case studies to exemplify and support the arguments deployed to justify autonomy and choice in end of life matters. Both authors are medical doctors who draw on their long experience to provide a very compassionate and sometimes a controversial case for dying with dignity.
The authors identify two crucial ‘turning points’ at life’s end:
The first medical turning point near the end of a person’s life is the time when the patient turns away from aggressive treatment aimed at restoring health and opts instead for comfort measures to ease the dying process. A second turning point may occur in a very few patients who are suffering intolerably in spite of comfort measures that are properly administered, such that the patient wishes to hasten dying and thereby shorten the period of suffering.
What is suffering intolerably? The authors argue that this is a subjective judgment that will differ from patient to patient and therefore, it is the patient who should decide. In cases where a patient becomes incompetent then the matter rests with what planning the person has done when competent, such as establishing a medical power of attorney with an agent – usually a member of one’s family.
For those who do not have friends or family – and there are such people in our community – the next best thing, the authors suggest is a Living Will (format available from DWDV office). Whatever advance notice is given for what we might desire for our future selves the authors suggest that we discuss the matter fully with those involved, such as our doctor. Do not think, they warn, that because a doctor listens sympathetically that he or she is agreeing with you – make sure that you have an explicit undertaking by the doctor that he or she will follow your wishes.
The authors say:
Our [American] society has slowly come to the universally held position that it is ethically and legally permissible to withhold or withdraw certain forms of treatment or support when a person who is competent refuses treatment or when an incompetent person has previously (when competent) given this authority to a proxy or agent by an advanced directive.
A more radical shortening of life can be achieved by withholding food and fluid from the patient, on the advice of an authorised agent in the case of an incompetent patient. Terminal dehydration with sedation is clearly a right for the competent patient – one cannot be forced to eat or drink against one’s wishes.
In a very useful chapter the authors distinguish between and discuss the difference between sadness at the end of life and clinical depression. The reason why this is useful is that there are still some people who seem to believe that no one in their right mind would contemplate ending their life. Hence, anyone who wishes to do so must, so these people believe, be suffering from some sort of depression or mental illness (and, hence, should not be permitted to end their lives). The authors say:
When a terminally ill patient with less than six months to live decides to hasten death because of intolerable suffering despite meticulous comfort care, it is not the same as a depressed patient becoming suicidal. Typically, the word ‘suicidal’ is used for patients whose psychiatric conditions make them temporally and irrationally want to end their lives because of acute psychological distress. By contrast, the term ‘hastening death’ is more appropriate for patients whose medical conditions are terminal and who make a rational choice to shorten the dying process by days or weeks to avoid intolerable suffering.
There is much good advice given in this book to allow for a merciful death. The book discusses the options available to hasten one’s death; the part played by pain and its control and has a range of appendices.
It is a very readable book and the case studies in themselves are fascinating and demonstrate that though we are more rational and merciful than we have been in the past there are still practices that deprive patients of their self-determination.
Dr Ralph Blunden
Unplugged: Reclaiming Our Right To Die In America
By William Colby, American Management Association, 2006.
Terri Schiavo was 26 years old when she suffered cardiac and respiratory arrest that caused brain damage. She received 15 years of institutionalised medical care as a patient described as being in a persistent vegetative state (PVS). There was a lengthy series of court cases and appeals between Michael Schiavo, her husband, and Robert and Mary Schindler, her parents. Michael wanted the life support systems removed and her parents did not.
This is the first famous case examined by William H. Colby in his book Unplugged: Reclaiming our Right to Die in America. He devotes the first three chapters to a detailed and laboured account of the Schiavo legal battles. It is a thorough account, and based in the American legal system. In this book, each section would have been improved with the inclusion of a summary or abstract to give readers an overview of the discussion. Colby writes out of his own experience, or otherwise personalises the story, which at times hinders the clarity of discussion. He discusses a number of examples of the development of medical technology such as Dr Lown’s invention of the DC defibrillator. But the reader has to wait for the story to unfold rather than be appraised of the issue fully and clearly in the first instance.
The book is about the way Americans are attempting to deal with the issue of dying and the current legal shortcomings that have not kept up with the advance of medical technology. He confronts the issue of the law and the right to die (Chapter 5). He has one chapter (12) devoted to the right to life arguments: ‘But I believe in the right to life’ but it is rather disappointing. He reaches the conclusion that:
The main point of this section on religion is to show that our religious leaders have the same breadth and variety of opinion that our medical, legal, and political leaders do.
Another landmark case discussed by Colby is that of Nancy Cruzan. After a car accident she fell into a persistent vegetative state and her family fought in the courts for three years to have her feeding tube removed. She died 11 days after the feeding tube was removed. Her father committed suicide six years later.
This case also is given careful discussion by Colby. There is a 15 year gap between Nancy Cruzan’s death and the Schiavo case. The discussion of the Cruzan case leads to a chapter that considers ‘How we die in America today’ and other more general issues.
The other prominent historical case discussed in various parts of Colby’s book is that of Karen Ann Quinlan. Quinlan was 21 when she fell into a coma that led to a persistent vegetative state. (She had been at a party where something she drank caused her to fall unconscious.) She was kept alive on a ventilator for some months without improvement and her parents asked for her to be taken off it. The hospital refused and legal action then followed that set new precedents at law. After Quinlan had life support removed she lived on in a coma for nearly ten years when she died of pneumonia in 1985.
The issues of physician assisted suicide; medically assisted death; euthanasia and the related medical and hospital practices and the framework of law will continue to be controversial for some time to come. Colby’s book is a good overview of the issues put forward in a personalised way, but sometimes a bit verbose (for which he apologises at the end of the book!) The book’s major failing is its equivocation – Colby is a lawyer who tries to be impartial, but in doing so he vitiates his arguments and fails to take a strong stand on what is morally required in this brave new world.
Dr Ralph Blunden