Katherine Sleeman: Assisted dying is about more than autonomy

Last month, Jeffrey Spector, a business man from Lancashire, travelled to Switzerland to receive assistance to die. He had been diagnosed six years earlier with an inoperable spinal tumour, which although was unlikely to kill him, would almost certainly have led to progressive paralysis and dependence. His choice, supported by his wife and family, was to die rather than face the prospect of inevitable suffering.

Jeffrey Spector’s death has reignited the debate about legalization of assisted dying. During the last Parliament, Lord Falconer’s Assisted Dying Bill progressed further than any previous attempt to change the law, and is tabled for reintroduction on 4 June. The Scottish Parliament may recently have rejected a change in the law, but England and Wales are several steps closer to making assisted dying a reality.

I’ll See Myself Out, Thank You is the pithy title of a collection of essays on the subject of assisted dying. Some of the essays are specially written for this collection, others are taken from speeches or previously published articles, but—as the title suggests—all argue for assisted dying to become legal. The impressive list of contributors includes ethicists, philosophers, clerics, journalists, and physicians, and perspectives range from the detached and theoretical to vivid and courageous first hand accounts of living with a terminal illness.

This is not a book that carefully toes a diplomatic line. Several contributors argue that assisted dying should extend beyond terminally ill people, which is in opposition to the six month prognosis currently stipulated in Lord Falconer’s bill. This six month line in the sand is arbitrary and meaningless (quite apart from the fact that it is impossible to predict with any accuracy) and it is refreshing that many of the writers in this book explicitly state this. Other punches not pulled are the economic case for assisted dying, the pressures on society from our ageing population, and family convenience. There is no hiding behind rose tinted glass here.

The strong writing is occasionally weakened by inaccuracy. For example several contributors repeat the myth that when doctors provide morphine to relieve pain in people who are dying, they knowingly hasten the patient’s death (the so called doctrine of double effect). However, there is no evidence that opioids, if given in appropriate doses and titrated to the patient’s symptoms, shorten life. Perpetuating this myth seems at best careless, and at worst irresponsible.

A final chapter entitled “Palliative care: the promise and the reality” draws much of its evidence from a 15 year old ethnographic study carried out in a single hospice. A vivid description is given of patients whose faecal incontinence “stank the place out,” whose fungating tumours were “rotting away on the surface of the skin,” and of Annie who “lingered for six weeks” and whose “stench reached to the reception area.” Sadly, such language is likely to frighten and alarm rather than inform.

Throughout this book the focus is on autonomy. Autonomy, from the Greek meaning “self governing” is one of four ethical principles upon which medicine is based, directly opposed to the widespread paternalism of the past. Few people would argue that autonomy is not important, but is it the highest ethical principle? We are not and cannot be wholly autonomous. None of us have the autonomous right to rob a bank, or even to receive antibiotics when we have a cold. The question of how far our autonomy should stretch is fundamental to the assisted dying debate, but is not explored here. The other side to the autonomy coin, the potential for harm and the need to protect the most vulnerable in society, gets little more than a passing glance beyond the confidently asserted but entirely ambiguous mention of “safeguards.” These safeguards, as in Lord Falconer’s bill, are never defined.

Within and without the House of Lords, the assisted dying debate will continue. Such are the passionate and firmly held views of supporters and opposers, that the “debate” can resemble a shouting competition, each group trying to drown the other out by yelling louder. As this book demonstrates, supporters of assisted dying certainly include some strong voices. The trouble is, when everyone is shouting, it’s impossible to hear anything.

Debbie Purdy, who died last year in the Marie Curie Hospice Bradford, wrote movingly before her death of her experiences campaigning for assisted dying. While resolutely in favour of a change in the law, in this simple first hand account she demonstrates complexities and grey areas—in her own situation and in Lord Falconer’s bill—that I’ll See Myself Out, Thank You does not acknowledge. We feel her strength, but also her vulnerability. She doesn’t shout, and we are able to listen.

If the intention of this book is to stimulate debate, it has failed. There will be (and perhaps can be) no resolution to the argument between autonomy and vulnerability. A more enlightened tactic would be to focus not on these fundamental, and potentially unresolvable, differences, but on common ground. Several contributors wrote of population ageing, the need for better advance care planning, and for societal acceptance of death. “Doctors appear to be hard wired not to mention death” writes Mary Warnock. She is right, and this is a catastrophic failure of medical training. But to use this failure in her case for assisted dying, while presenting no other potential solutions, is disingenuous.

Ultimately, the title of this book betrays its fundamental flaw, which is that it is a collection of autonomous voices talking about autonomy. Individually, the essays are powerful, persuasive, and moving. But as a collection, this power becomes diluted through repetition. The focus on who might benefit from assisted dying is understandable, but the absence of proper consideration of who might be harmed and how to negate this is an omission. In response to the issue of vulnerability John Harris, philosopher, asserts “those who might be encouraged to die are and remain free to refuse. They are not victims unless they make themselves victims.” This is a book that will reinforce already held beliefs but do little to appease concern for those less able to self-govern. While the essays are stimulating and enjoyable, the editors have missed an important opportunity by not broadening the rhetoric from autonomy, and they have therefore failed to deliver anything truly progressive.

Katherine Sleeman is a clinical lecturer in palliative medicine at King’s College London, Cicely Saunders Institute, Department of Palliative Care Policy and Rehabilitation. She is on Twitter @kesleeman

Competing interests: I declare that I have read and understood the BMJ Group policy on declaration of interests and I have no relevant interests to declare. I have an NIHR funded clinical lectureship in palliative medicine. I split my time between clinical work as a palliative medicine registrar, and academic work at the Cicely Saunders Institute, King’s College London.

I’ll See Myself Out, Thank You
Editors Colin Brewer and Michael Irwin
Skyscraper Publications, 2015

See also: