Main Site         

Can there ever be such a thing as a ‘good death’?

2008 December 6
by Paul Vallely

WE ARE SITTING on a red-buttoned leather bench in an oak-panelled corridor in the House of Lords. It is the only place that Baroness Mary Warnock reckons we can get a bit of quiet, since she shares an office and there will be too much going on there. We sit quietly, talking about killing people, as a succession of lordly luminaries pass by. Most of them say nothing, or nod, though Lord Mandelson of Foy stops right by us as he is buttonholed by a passing peer and engaged in some nefarious negotiation.

But then an elderly chap with wild white hair appears. He wears a sober grey suit but grins manically and dances from foot-to-foot like some parliamentary Rumplestiltskin. “Be very careful of this woman,” he confides, waving his papers at Lady Warnock who looks on with a quizzical half-smile. “She’s very dangerous.” He might be joking. Or it might be true warning spoken in jest. You never can tell with politicians.

Of course, it may just have been that he suspected he knew what the 84-year-old moral philosopher was telling me. She was talking about old people’s “duty to die” and was saying that it would be a good idea if some members of our society were “licensed to put others down” when they become unable to look after themselves. “Only don’t call it licensed to kill,” she warns, seeing the shadow of 007 cast across a potential headline.

There’s a lot about the right to die in the air at the moment. Debbie Purdy, who suffers from multiple sclerosis, was recently granted leave to go to the Court of Appeal in an “assisted suicide” case. The Bradford woman has demanded that the Director of Public Prosecutions give her an undertaking that her husband will not be taken to court if he takes her to a suicide clinic in Switzerland when her illness becomes intolerable to her.

Not long before, Daniel James, a 23-year-old former England schoolboy international who had been left a tetraplegic and in “unbearable pain” after a rugby injury, made that journey to Switzerland to be helped to kill himself after three suicide attempts had failed. His parents, who accompanied him, were questioned by the British police on their return. Under UK law assisting a suicide is an offence punishable by up to 14 years in prison and though none of the relatives of the 92 Britons who have gone abroad for an assisted suicide has been prosecuted, a number have been charged and had to undergo months of investigation before those charges were dropped.

Shortly after that, Hannah Jones, who is just 13, won a legal battle against a hospital’s attempt to force her to have a life-saving heart transplant. She said that she had already endured “too much trauma” since she was diagnosed with a rare form of leukaemia at the age of five. Most recently a member of the Scottish Parliament, Margo MacDonald, who has Parkinson’s disease, has announced her intention of introducing a bill to change the law on assisted suicide in Scotland. She too has demanded the right to die.

Not that “right to die” is an expression Mary Warnock has much truck with. “Right” is too slippery a term. Ordinary folk may know what it means but philosophers are more subtle; after all, one of her trade, the 18th-century utilitarian Jeremy Bentham, once described natural rights as “nonsense on stilts”. And Warnock, whose speciality is existentialism, is of a similar disposition. “I avoid the word. It’s so ambiguous. Is it legal or moral?”

Surprisingly, perhaps, she is quite happy with the notion of the “duty to die”, which most people find a good deal more controversial. A couple of months ago, in an interview with the Church of Scotland’s magazine Life and Work, she said: “If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service. I’m fully in agreement with the argument that if pain is insufferable, then someone should be given help to die, but I feel there’s a wider argument that if somebody absolutely, desperately wants to die because they’re a burden to their family, or the state, then I think they too should be allowed to die.”

The journey from the right to die to the duty to die is a significant one, especially since there are many people in society who are uncomfortable even with the notion that individuals who want to end their lives have the right to ask others to help them kill themselves, or even do it on their behalf.

Many were outraged. Neil Hunt, the chief executive of the Alzheimer’s Society, said: “I am shocked and amazed that Baroness Warnock could disregard the value of the lives of people with dementia so callously. With the right care, a person can have good quality of life very late in to dementia. To suggest that people with dementia shouldn’t be entitled to that quality of life or that they should feel that they have some sort of duty to kill themselves is nothing short of barbaric.”

The willingness to bear one another’s burdens is one of the key marks of a just, civilised and caring society, said Dr Peter Saunders of the Care Not Killing Alliance. “We need to work harder to oppose prejudice towards people suffering from mental incapacity, to foster and create communities where time, energy and resources are expended to help those with special needs and to put in place strong mechanisms to protect those in our society who are most vulnerable to exploitation.”

Other critics referred to “pitiless planet Warnock” where human beings are no longer thought to have any value as soon as they become unhealthy and dependent.

But the baroness is unrepentant. Mary Warnock has been Britain’s most high-profile philosopher for almost three decades. Her name attaches to two eponymous reports. The Warnock Report into Special Educational Needs in 1978 set down the principle that all children, however disabled or emotionally damaged they might be, should be taught in mainstream schools – a conclusion from which she has recently resiled. Then in 1984, after the birth in the UK of the world’s first IVF baby, she chaired the committee that produced the Warnock Report on Human Fertilisation and Embryology which shaped much of the current law on bioethics. All that has given added weight to her views of euthanasia.

“ ‘The duty to die’ is an unfortunate expression,” she concedes, explaining that it was the headline put on an essay she wrote for a Norwegian magazine. But given what she goes on to say it does not seem an inaccurate summary of her view. “If someone who wants to die because she can’t bear to see the lives of her children being wrecked [by her illness] I see nothing wrong with that. Many parents give their whole lives to their children in altruistic self-sacrifice; why should that be disallowed at the end of life?”

An academic nicety enters her discourse. “The contrast between feeling obliged and wanting is a very superficial one. It’s not a real contrast. The word duty is rather a derogatory word in the English language nowadays; the modern idea is that duty is always unpleasant whereas in the 18th and 19th centuries the idea was that one wanted to do one’s duty.” Even today “most reasonably morally aware people would have no peace if they felt that they had not done their duty. So, yes, I would say that part of the motive in wanting to die is the obligation they feel not to be a burden to other people, of not wanting to waste other people’s lives and resources – their own or those of the state. But it’s only part of their motivation; they also feel that their life is now horrible. Part of the problem is that people tend to talk as if we act from one motive only.”

Her philosopher’s logic takes her further out along the limb where she perches perilously distant from public common sense. “Once that principle is accepted it is irrational to confine it to those who are terminally ill.” Anyone who wants to die should be helped to do so – the old, the miserable, the mentally ill. She cites in evidence the example of Tony Bland, the football fan who ended up in a permanent vegetative state after the Hillsborough disaster. “Tony Bland was not terminally ill.” Yet the courts gave permission for the withdrawal of the artificial feeding tubes which might have kept him alive for decades. He was allowed the starve to death because the courts defined his feeding tubes as medical treatment.

The controversial nature of such decisions was illustrated by the similar case of Terry Schiavo whose husband and parents fought a court case in the United States because her spouse wanted her food and water withdrawn and her mother and father did not.

The right to die is a maze with many twists and turns. Near its centre lie pathways that enter into delicate territory about medical responsibility and paternalism, individual and social justice, personal freedom and the common good and fundamental issues like autonomy, identity, consciousness, autobiography, the sanctity of human life and the nature of personhood.

In Tony Bland’s case doctors persuaded the courts to agree that he was no longer a person. He did not blink, or move anything in response to questions and demands. He could give no physical sign that he was a thinking individual; he could not cogitate. His body seemed just an empty shell. But there could be no doubt about the personhood of the rugby player Daniel James. “His mother told me that he was passionately keen on music,” says Lady Warnock. “He was an historian. But clearly the life of the mind was not enough for him.”

Yet might he not have changed his mind later in life, as people sometimes do about major events whose consequences were not fatal? “He was doubly incontinent; he felt he had reverted to babyhood,” the philosopher says. “He had been like that for 18 months. There was no way, his mother felt, that he would get used to it. He had tried to kill himself three times but had been physically unable to do it.”

Modern medical technology is taking us in to new territory here by stretching out the length of time people with grave conditions can be kept alive – or can take to die. The increased incidence of conditions like Alzheimer’s create another ethical no-man’s-land.

“Dementia is very tricky,” Lady Warnock concedes. “Normally one would say that the person requesting death has to be compos mentis and a person suffering from terminal dementia is not. But dementia is a fairly slow process in which there comes a point where there is a steep deterioration; there seems to me to be no reason why people in the early stages could not make an advance decision, a living will, to say when I reach a certain point – when I am incontinent, unhappy, unable to recognise my relatives – I’d like to be helped to die. A doctor would decide when you met the conditions you had laid down.

“This should be absolutely common practice. I’d like to see an official form for this available in every doctor’s surgery which people would fill in routinely like an organ donor card. GPs should draw people’s attention to them and people would deposit them, with their bank manager or whoever. Or people could fill them in the moment they are diagnosed.”

This is another step across society’s received wisdom. Traditionally psychiatrists have seen suicide as the unacceptable outcome of depression. Because depression is regarded as an illness, the medical profession has generally determined that it has a duty to prevent suicide, rather than assisting it. Mary Warnock challenges this, insisting that in some circumstances euthanasia is a perfectly rational choice.

People, like the late pope, John Paul II, who regarded his drawn-out dying as part of his witness to the world, are to be respected because of the “fighting spirit of carrying on” while they have breath in their body. “I admired that,” she says, “but just as much as I admire people who fall on their sword, like Philip Graham.” Graham was the publisher of the Washington Post who, in a period between his bouts of manic depression, coolly decided to kill himself. “He knew that he would inevitably enter another phase in which he would again do deep hurt and damage to his family so he committed suicide. That is an extremely admirable form of self-sacrifice.”

Lady Warnock has had an enormous postbag in response to her views. “About 40 per cent are indignant letters from people who are looking after aged parents and who hate the idea that what they are doing is not worthwhile. But around 60 per cent agree with me.” The arguments are not ideological but “are all-based on personal experience from middle-aged and old people”.

But she has ranged far wider in a new book, Easeful Death, written with Dr Elisabeth Macdonald, a cancer specialist who lectures in medical ethics. In it she attempts a systematic defence of her position, the nub of which is that “if the patient is truly miserable and truly wants to die he should be allowed to do so, out of compassion. The key principle is that one must always do what one can to alleviate suffering.” Her arguments rest on some key considerations: choice, quality of life and economic and human costs.

She structures her argument by addressing the principle objections to her own views. The most absolute of these is the notion of the sanctity of life. This insists that human existence has value, no matter how reduced or debased the circumstances. Life has an objective value that cannot be disregarded even if the person whose life this is has little regard for it. A breach in respect for that fact does not just harm the individual directly affected but in some way violates society in general.

Lady Warnock suggests, somewhat unconvincingly, that this is essentially a religious argument, based on the idea that life is a gift of God, which is infinitely indivisible, and that therefore, like all religious tenets, it is to be rejected or accepted as a matter of faith rather than reason. (The problem is that the same argument could equally be applied to assertions about human freedom, equality or social justice or any other truths that humanists hold to be self-evident.) But Lady Warnock seems to believe that this is sufficient grounds for everyone except the religious to dismiss the idea that human life has intrinsic value, adding that in practice most people accept that other values are sometimes more important than the idea that life has absolute value.

“The sanctity of life is a suspect argument; if we accepted it we wouldn’t just reject capital punishment but we’d never send soldiers to Afghanistan. We might not even have an army at all since the point of an army is that it is trained to kill,” she says. But most significantly, those who insist the sanctity of life is absolute ought to end their argument there. And yet those who deploy it invariably move on to deploy practical arguments about the social consequences of euthanasia. “People who employ the sanctity of life argument almost always do so as a first step but hardly anyone relies on it entirely. They always move on to more utilitarian arguments.”

All these, she says, can be characterised as variants of the “slippery slope” argument. It says that if we allow assisted suicide in those hard cases that draw such public attention there will inevitably follow unintended consequences: old people will feel pressure to consent where they do not really want to; patients will begin to regard doctors with ambiguity or even suspicion; pressure on NHS resources will give hospital personnel an economic incentive to push people toward consent; attitudes to the disabled will deteriorate as the idea gains currency that certain kinds of life are not worth living.

What all those anxieties rely on, Lady Warnock insists, is the instinct that once we are on the slippery slope we will invariably end up at the bottom, with the worst case outcome. “People who produce the slippery slope argument insist that however much you hedge [any new law] about with qualifications, no safeguards are going to be sufficient,” she says. “In practice it is hard to argue about this because all the feared consequences are in the future so neither party can prove their case. All you can do is point to the experience of other countries and say that where such laws do exist it hasn’t been disastrous for relationships between doctors and patients, and it hasn’t produced radically changed attitudes to disabled people.”

The problem is those facts are disputed. Assisted suicide is legal in Holland, Luxembourg, Belgium, the US state of Oregon and Switzerland. In the Netherlands, where voluntary euthanasia has been legal for eight years, the law is now used on very severely disabled babies with no hope of long-term survival. Critics claim that about one in 12 deaths in Holland in recent years have been euthanasia deaths, and that more than half of these were without explicit request.

A study for the Dutch Ministry of Health reviewed 111 cases of physician-aided dying, and showed that 32 per cent of cases had complications. In 12 per cent, the time of a case’s death took longer than expected (45 minutes to 14 days), 9 per cent had unexpected symptoms like vomiting and 2 per cent awoke from coma. In 18 per cent of cases, the doctors had to go on and provide euthanasia because of problems or failures with patient-assisted dying. The slippery slope, Warnock’s opponents say, is no fiction: it is already well-polished.

Popular concerns are more dramatic. The book and film The Diving Bell and the Butterfly tells the story of a French fashion journalist, Jean-Dominique Bauby, who, after a massive stroke, lay trapped inside his own body unable to communicate until one of his nurses realised he could blink one eyelid. He was suffering from a rare condition called Locked-in Syndrome, in which the mental faculties are intact but the entire body is paralysed. Eventually, by blinking when a letter was painstakingly read from the alphabet, he was able to form words, and wrote his book. Stories like that stoke atavistic fears that doctors may pull the plug on individuals who want to live.

Lady Warnock is confident that medicine has a solution. “The existence of brain scans is of great reassurance there. The scan of [the Hillsborough victim] Tony Bland showed his brain had reduced to liquid. The more we get to know the more certain we can become that people do not have any of the intentions, pleasures, hopes, excitements, pleasures, or things we live for. We don’t want to be remembered as a pitiful shell on a bed after the real person has gone but for our conversation, love and laughter.” Some might question the notion of personhood wrapped up in that existentialist description, but many more will have reservations about her attitude to the safeguards. “Psychiatrists’ judgements, second opinions, time lapses [to ensure that people won’t change their mind] – we’ve got to assume that they will be properly used.”

Doctors have more reservations. Their ancient tradition, originating with Hippocrates, insists that the first duty of a medic is to “do no harm”. There have been prominent challenges to that rule in modern times from individuals such as the Australian physician Dr Philip Nitschke and, most famously, the US physician Dr Jack Kevorkian who claims to have assisted at least 130 patients to die. Dr Kevorkian invented a death machine he called a Thanatron, to which he attached the individual who wanted to die – and they then, themselves, pushed a button to administer the fatal dose. He also devised something he called a Mercitron involving a gas mask fed by a canister of carbon monoxide.

The media dubbed him Dr Death and he had his medical licence revoked by the State of Michigan in 1991. But he carried on until 1998, being prosecuted a number of times but always been discharged after his lawyers argued that the individuals themselves had taken the final action that resulted in their deaths. He was finally jailed for second-degree murder in 1999 after going one step further and administering the dose to individuals who could not do it for themselves.

“The difference between turning off a machine and giving an injection is an arbitrary one,” insists Warnock. “Indeed an injection would be more compassionate than a lingering death; people can take up to a fortnight to die from withholding food and hydration. But the public have a primitive idea of causation; they think that a cause has to be active; but you can cause the death of your cat by neglecting to feed it. I can’t see the moral distinction.”

But many doctors see one, or intuitively detect one. One, writing in the British Medical Journal, recently came up with an ironic riposte. “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,” wrote Dr Carl Elliott, professor of medicine, ethics and law at McGill University in Montreal. “Legislation should authorise philosophers to perform euthanasia and assisted suicide. Lethal injection is a technically uncomplicated procedure that philosophers could easily learn to perform. It is already employed in several United States jurisdictions as a means of capital punishment without the aid of doctors.”

His modest proposal continued: “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. More importantly, philosophers see distinctions between acceptable and unacceptable forms of euthanasia – distinctions that are apparently invisible to many doctors – that they believe would prevent a slide down the slippery slope. And they have the additional advantage of failing to see the distinctions that doctors see between withdrawing life sustaining treatment and administering a lethal injection that prevents doctors from endorsing the latter. But philosopher-assisted suicide and euthanasia would avoid all these problems.”

Warnock acknowledges the resistance to her ideas. “The majority of doctors are against it. Some say that even referring a patient to such a person would be a dereliction of duty. But the views of doctors are changing; not all feel as they used to that they have total control over the patient. The concept of patient autonomy is seeping in. The next generation of doctors may be more amenable to the idea.”

Whether they will change to the extent that she would hope is another matter. Things that seem clear in the world of pure philosophy may continue to look more messy in the real life-and-death world of the hospital ward. Even some philosophers understand that. Onora O’Neill, another philosopher baroness, writing a review of the new Warnock book in The Lancet, suggested that however theoretically persuasive Lady Warnock’s arguments might be the business of framing a law may be impossible.

Lady O’Neill, professor of philosophy at Cambridge, wrote: “How are we to distinguish requests to be killed that express individual autonomy, from requests that express compliance with the (unspoken) desires of burdened carers and relatives, not to mention expectant heirs? Legislation to make assisted dying lawful needs not only to prohibit action where a request reflects momentary despair … but to prohibit action on requests that reflect an individual’s weary compliance, indeed deference, rather than their autonomy. In a world of ideal, if mythic, rational beings, whose choosing was guaranteed to be wholly autonomous, assisted dying legislation might not be risky; but that is not our world.”

“That seems to me to be a weak argument,” bridles Lady Warnock. “Courts of law in murder trials are perfectly competent in deciding what is the motivation behind an act. That’s part of the job of a lawyer.”

But lawyers, judges and juries often make mistakes, as campaigners for the abolition of the death penalty routinely pointed out. And mistakes cannot be undone when someone has been killed as a result.

“If we went along that line,” harrumphs Lady Warnock, “there are a huge number of things we’d never do as we become more risk averse. We should make laws for the normative not the exceptional. We make laws on the assumption that people are going to keep them.”

In these ways the philosopher’s world is so very different from the messy one the rest of us inhabit. We may feel compassion and even empathy for individuals such as Debby Purdy and Daniel James. But we have also to bring to mind the whole array of individuals whose rights might be traduced by the highly emotional pressures of a law allowing assisted suicide and euthanasia.

The principle of the common good – which is enshrined in British law in many areas from the wearing of seatbelts to the use of recreational drugs – cannot countenance autonomy for individuals where it risks doing harm to others. In the end respect for the rights of distressed individuals cannot be purchased at a cost to the great majority of terminally ill people. Hard cases, as they say, can make bad laws. Which is why, I suspect, Mary Warnock’s arguments may continue to convince only in the world of academia.




Comments are closed.