Granting last wishes

Clive Seale tells why he hopes to provide some hard evidence in the tricky debate about euthanasia

What do people want as they approach the end of their lives? If they are in serious pain or unable to lead independent lives should euthanasia be available to them? If, as Oxford jurisprudence professor Ronald Dworkin says in his 1993 book Life's Dominion, "every day, rational people all over the world plead to be able to die", how many are they, and should their wishes be granted?

Clive Seale hopes that he can provide "some actual facts about what's going on in people's lives" in answer to such questions. And with his recent publication of findings from a 1990 survey in England it would seem that he has done just that.

"One of the things I've been struck by in reviewing the literature on euthanasia is that it consists of moral philosophy and discussion of individual cases. It's very unusual to find empirical work," says Seale, a lecturer in the sociology of medicine at Goldsmiths College, London. Together with Julia Addington-Hall of University College London, he has published "Euthanasia: Why people want to die earlier" in a recent issue of Social Science and Medicine.

The 1990 survey was no simple opinion poll. Taking 3,696 deaths in England that year, drawn from 20 health authorities "a cross-sectional slice through the population" in Seale's words it discovered about a quarter of those people had expressed a wish to have died earlier. Under 4 per cent, however, had specifically requested euthanasia.

Seale is keen to emphasise the inclusive basis of the survey: "Birth and death certificates are the only two complete listings of people that exist in this country," he says. "All others are incomplete in various ways". In fact the survey repeated on a larger scale a study of a "nationally representative sample" of 639 deaths in 1987; a study that in its turn followed in the footsteps of a 1959 survey of the care of elderly people in the last year of life, run by the Institute for Social Studies in Medical Care.

So it was not the dying but their relatives, or whoever was closest to them, who were questioned. Fairly late in a structured interview format in the 1987 survey it is question number 218 they were asked: "Looking back now, and taking X (the deceased)'s illness into account, do you think s/he died at the best time or would it have been better if s/he died earlier or later?" While more than half answered "the best time", 28 per cent gave a "better earlier" reply in 1990 (the figure was 24 per cent in 1987). In the later survey this question was followed by two more: "What about X? Did s/he ever say that s/he wanted to die sooner?" and, if the answer was yes, "Did s/he ever say that s/he wanted euthanasia?" These had positive replies of, respectively, 24 and 36 per cent.

Would it not have been better to interview the dying themselves, rather than relying on second-hand reports? Seale has his answer ready. "There are all sorts of problems about interviewing dying people. First of all, you tend to be confined to studies of people with cancer or possibly Aids. But things that most people die of are not terminal diseases, they are things like strokes and heart attacks. You're also confined to people who are compos mentis. So you're already starting to cut down the relevance of your study."

Addington-Hall, who is based in UCL's epidemiology and public health department, concedes that studies in the United States suggest that those closest to a dying person might not always be reliable. "Patients and relatives won't necessarily tell you the same thing. Symptoms distressing for an onlooker might not be so for the sufferer." She counterbalances this, however, with an emphasis on "the advantage of our approach that you can get information on every death, and thus a representative picture of dying."

Anyway, adds Seale, relatives' and carers' views are important. "They participate in decision-making about what care to have. And the study shows that people are not just independent actors they're bound up in a web of interdependence. Any decision to have or not to have euthanasia has to take into account people's relationships, and the quality of the relationships."

Which brings us to one of the survey's perhaps more surprising findings. It was dependency established through questions about a dying person's ability to do such things as dress or wash her/himself that was a more important factor than pain in euthanasia requests; in statistical terms, it was not pain but a high dependency score that had the stronger association with the desire to die earlier. Indeed, for deaths from cancer probably the most painful in the public mind respondents were no more likely than average to wish for an early death. "An awful lot of the discussion about dying is about having cancer," notes Seale. "The experience of the cancer patient is often highlighted as the model. . . But (he or she) is a special case." In fact, just 26 per cent of deaths over 16 are of people with cancer: Addington-Hall is now studying the survey's data "to find out what are the needs of people dying of non-cancer-related causes".

The finding about dependency appears to favour the pro-euthanasia lobby. "The Voluntary Euthanasia Society has always complained that there has been an excessive focus on pain," says Seale. "They've said that dependency and fear of mental confusion are also behind requests for euthanasia, and that message hasn't always been noticed." Or as John Oliver, VES general secretary, puts it: "People want to have the option to know as they grow older that they don't have to die horribly. . . (and) have to suffer whether they like it or not."

However, Dame Cicely Saunders, doyenne of the hospice movement, regrets that "dependence is seen as purely negative in the present age''. The palliative care practised in hospices and her own experience of caring for her husband shows, she says, "an essential independence that can grow stronger even as the body grows weaker."

The kind of care given to the dying (mostly cancer patients) in hospices is often commended as rendering euthanasia unnecessary. Peter Byrne, senior lecturer in the philosophy of religion at King's College London, who has contributed to a recent book on managing terminal disease, thinks that improving palliative care would "whittle away at those cases where euthanasia appears to be the only or best option".

But one of the survey findings might seem to go against that, for people being cared for in hospices were, if anything, more likely to have talked of preferring to die earlier as were those closest to them. Was this perhaps a surprise? "I presented this finding to an audience that contained a number of hospice nurses," says Seale, "and one of them said 'this is because we encourage people to talk about their worst fears'. That seems quite a convincing explanation."

A less unexpected finding to emerge from the analysis of the 1990 survey report is the relevance of a close relationship. If the person answering the questions was the husband or wife of the deceased, then they were less likely than other respondents to feel that it would have been better if he or she had died earlier whatever the circumstances of the deceased's pain, distress or dependency. This, in Seale's view, supports "slippery slope" arguments against euthanasia that allowing its voluntary use in some cases might lead to more widespread, and perhaps involuntary, euthanasia for others.

"Simple demographic facts mean that old people have carers who are less attached to them than in previous generations," he explains. "In the past people died slightly younger and were more likely to have their family around them. But the elderly now are increasingly being looked after by people with a low emotional investment in their lives continuing. And there are some unscrupulous relatives around, as literature on elder abuse attests.

"So in that sense I would be concerned that if euthanasia was legalised it would open the door to various abuses . . . I would be very concerned about the 'slippery slope' and the fact that it would further marginalise very elderly people."

The example of Holland looms large in the argument. There, although euthanasia is a criminal offence, in practice doctors are not prosecuted provided they follow certain criteria. About one-third of persistent, explicit demands for euthanasia are agreed to; 1.8 per cent of all deaths are the result of voluntary euthanasia. Cases where a life was terminated without a patient's explicit request not classified as euthanasia by the Dutch accounted for 0.8 per cent of all deaths. These figures come from the House of Lords Select Committee on Medical Ethics, which earlier this year reported on questions of euthanasia, under the chairmanship of Lord Walton of Detchant, a former professor of neurology.

"In Holland the slippery slope points upwards, not down," says the VES's Oliver. "In the past, they did get cases of involuntary euthanasia, because of poor decision-making. Now, with more experience, there are fewer cases."

What of historical precedents? They are not relevant, according to Michael Burleigh, reader in international history at LSE and author of Death and Deliverance: Euthanasia in Germany 1900-1945. "I don't believe in slippery slope arguments on the whole," he says, describing the German experience as "bound up with notions of racial purity and eugenics (and) the health of the collective. But what's going on in Holland is all to do with the classical liberal attitude to medicine, and to do with sick individuals. I don't think there are obvious parallels."

As for a doctor's legal position, Seale, whose father was a GP, feels some regret that "so many decisions they make are publicly debated now. I have a sort of nostalgia for the times when doctors were trusted to look after their patients and make the right decisions, without outsiders interfering."