Dying will never be the same again

When US doctors confessed to helping their patients to die, a grass-roots euthanasia movement quickly followed, writes Sue Woodman. Is the same thing starting to happen here?

Few countries in the world have had a euthanasia society for as long as Britain has (the Voluntary Euthanasia Society was founded in 1935), or have debated the issue before parliament as often as Britain has (six times in the last 50 years). Yet the British right-to-die movement has seen little progress for its cause through the 20th century. With no truly charismatic leaders and few compelling cases to captivate the national imagination, the issue has remained vaguely distasteful and removed from everyday life.

Suddenly, with the confessions last week of two doctors, Michael Irwin and David Moor, that they have helped numerous of their patients to die, and with the plaintive request of 47-year-old Annie Lindsell to be spared the horrible suffering that comes in the final stages of motor neurone disease, the debate has taken on a new level of urgency.

The argument was fed last Sunday by newspaper reports that the actress Zoe Wanamaker and her two sisters had had a "huge debate" over whether they should smother their terminally ill father Sam, the founder of the new Globe Theatre, when he was in a coma. Such stories of "real people" - their suffering and their determination not to be made to endure needlessly protracted deaths - have previously been the propellers that have advanced the cause in countries where right-to-die issues have taken their most powerful hold: Holland, Australia and the United States. Now that it is Britain's turn to tackle this urgent social dilemma, it may find lessons from those other countries in how to launch, orchestrate and sustain a movement whose outcome will affect the lives - and deaths - of all of its people.

In the US, the right-to-die debate also began with the confessions of two doctors. One, Jack Kevorkian, the controversial "Dr Death", has kept himself in the national spotlight since 1991 when he helped his first patient to die with the help of a jerry-rigged suicide machine. Seven years, four trials and much public discussion later, the number of "patients" Kevorkian has publicly admitted to having helped to die is almost 50 (though there are probably many more), and Kevorkian continues to defy law and order for the sake of his cause. But his increasing apparent recklessness is casting doubts. "It may be the right message, but Kevorkian is the wrong messenger," says one wary right-to-die supporter.

The other doctor, Timothy Quill, presents the more socially acceptable face of the debate. Quill, 47, entered the arena in 1991 when he published an article in the New England Journal of Medicine admitting his part in helping a terminally ill patient, "Diane", to die by writing her a prescription for a lethal dose of barbiturates. Quill's public image is the diametric opposite of Kevorkian's: he is the "moderate" of the movement, arguing for physician-assisted dying only as a last resort, under strictly circumscribed conditions. "I am trying to articulate the middle ground between the forces pushing this issue to the brink," says Quill.

But if doctors have become the public figureheads of the movement, they have not been its most crucial component: a dogged grass-roots campaign to change national laws and beliefs has been hiding in the wings. In the US, activists were once regarded as morbid fanatics who would meet in draughty church halls and pass information on lethal doses and sympathetic prescribing doctors along a whispered kind of "underground railroad".

Today they are a political force to be reckoned with, and their cause has become a national crusade. They have affected health policy, pushed their cause before the United States Supreme Court, and raised thousands of dollars to place the issue of assisted death on the ballots of numerous US states. Their different factions organise national conferences, keep sophisticated websites full of historical, legal and medical information (the British Voluntary Euthanasia Society and the Voluntary Euthanasia Society of Scotland have fashioned web sites of their own after the US models), and publish books, such as the how-to manual, Final Exit, first published in 1991 and recently updated. It was originally banned in Britain but became an instant best-seller in the US, selling half a million copies.

Final Exit, with its lists of lethal doses and instructions on the use of a plastic bag as a back-up method to guarantee death, was written by Derek Humphry, often referred to as the founder of the contemporary right- to-die crusade.

Humphry, a 68-year-old British-born journalist, was enlisted to the cause - as are almost all advocates - by bitter personal experience. His wife's battle with terminal cancer, and his own role in helping her to end her life, were movingly related in his book, Jean's Way. First published in Britain, Jean's Way caused an outpouring of empathy for the couple's plight.

It also attracted the attention of the Director of Public Prosecutions, who spent several months investigating whether to bring charges against Humphry. (For assisting a suicide, he could have been given a 14-year prison sentence). But by the time the DPP decided not to prosecute, Humphry had moved to the United States.

In 1980, galvanised by the response to his book, he started the Hemlock Society, generally regarded as the first modern right-to-die organisation, aimed at people who wanted to take their deaths into their own hands. To begin with, Humphry fought against a powerful tide of denial and fear. "It was the hardest job in the world selling death, and for the first five years I was very much alone," Humphry says.

But, aware of the potential of such a movement, Humphry persisted. The Hemlock Society grew to, at its peak, some 50,000 members in 84 chapters across the country. It has raised tens of thousands of dollars to promote political campaigns and given members a forum for their end-of-life concerns. It has also spawned several other right-to-die organisations with slightly different aims. Compassion in Dying, based in Seattle, provides volunteers to be with terminally-ill people who want to end their lives but don't want to die alone. Oregon's Death With Dignity concentrates its efforts on passing that state's stalled assisted suicide legislation, already approved by voters but held up in the courts. The California-based Death with Dignity Education Centre organises conferences to debate the issues and promote "a comprehensive, humane, responsive system of care for terminally- ill patients".

The leaders of these different organisations are a varied bunch - social workers, philosophers, lawyers and ministers - all united by a belief that death, too long a taboo and removed from the normal flow of daily life, urgently needs to be re-examined, with more control returned to the dying themselves. There are differences in opinion about how these goals should be achieved: through legislation, or in spite of it? With doctor-administered lethal injections, or with prescribed medication that patients must take themselves? The distinctions may seem elusive to opponents, but they are powerful issues to their supporters, and the source of heated, often divisive, internecine debate.

But for all their differences, right-to-die advocates are strongly united by their common ground and their common techniques of communication. As a group these crusaders, who are predominantly white, middle class and highly educated, understand well the power of the written word. They have even devised a list of "death-friendly" vocabulary.

In this particular debate, where death itself is regarded as a dirty word, advocates know that they can exert a subtle control over the direction of the argument if they can frame it correctly. "Euthanasia" sounds too involuntary, and "suicide" is too emotive and has connotations of premature death. Instead they favour phrases like "death with dignity" and "physician- hastened death". They like "medically-hastened death" best of all because it downplays the involvement of the doctor.

Opinion polls have shown that voters respond to these euphemistic subtleties - while 55 per cent of people said they would vote for a law allowing the terminally ill to choose "euthanasia", 65 per cent supported the right of the terminally ill to choose "death with dignity" over prolonging life. And, while 44 per cent would allow a terminally-ill person to choose a "lethal injection", 50 per cent would approve a "medical procedure".

Enlisting the aid of pollsters and spin doctors may be part of all modern political campaigns, but right-to-die advocates have also perfected the use of another vital contemporary aid - new technology. Their message has been spread around the world via cyberspace on two seamless communications channels, DeathNet and DeathTalk. DeathNet, for subscribers only, provides news of developments worldwide. DeathTalk provides an international forum for discussion.

The computer has also been used to select people for death, as Dr Kevorkian has done, from would-be "patients" who contacted his assistants via e- mail. It has even been employed to bring about death, as Australia's Dr Philip Nitschke did with his own software "Deliverance", a program that performed the world's first three fully legal, medically-assisted suicides by releasing lethal medication from a syringe at the press of a keystroke. (Australia has now repealed the law that, for just seven months, legalised physician-assisted death within the country's Northern Territory.)

For all their effective campaigning techniques and their powerful sense of contemporary culture, it is hard to know whether right-to-die crusaders are winning the war, or simply winning the battles. In the US they are confident; even though the Supreme Court voted last month not to recognise assisted dying as a constitutional right, and even though a dozen or more state legislatures have refused to consider allowing assisted-dying laws, advocates are none the less in buoyant mood. They have unleashed a taboo, they have prompted a vital and long-overdue debate, and they predict that it is only a matter of time before physician-assisted dying will, state by state, become the law of the land.

Certainly the debate has already resulted in profound re-examinations of both law and medical practice, and opened the way to necessary reforms in the care of the dying. Whichever way the right-to-die dilemma is decided, dying in the US will never be the same again. That, campaigners believe, is in itself a major victory. Now it's Britain's turn.