Leslie Burke: life, death and law
Laws preventing doctors from withdrawing patients' food and drink are no way to reassert a culture of life.
At first glance, Britain’s General Medical Council (GMC) appears to be jeopardising an important victory for those who oppose assisted dying. The GMC is arguing in the Court of Appeal against a ruling in favour of Leslie Burke, a 45-year-old man with a degenerative brain condition. Last year Burke won a landmark ruling to stop doctors withdrawing food and drink when he can no longer speak.
Burke had challenged the GMC’s guidelines, arguing that they were incompatible with the European Convention on Human Rights, which enshrines a ‘right to life’. The GMC Guidelines state that treatment, including artificial feeding, can be discontinued if a patient’s condition has deteriorated so severely and the prognosis is so poor that doctors believe it would be ‘too burdensome in relation to the possible benefits’ (1). In the ruling given in July 2004, Mr Justice Munby ruled that Burke had the right to artificial nutrition even at the point where he can no longer communicate.
The case has attracted much attention. Health secretary Patricia Hewitt, the Disability Rights Commission, the Catholic Bishops Conference for England and Wales and the Medical Ethics Alliance have all been granted permission to file submissions.
Most critics of assisted dying deplore the actions of the GMC. Right-to-Life advocates sensed a rare victory, thanks to the sympathetic figure of Burke. The Daily Telegraph stated in an editorial that ‘a doctor’s medical judgment should come second to the much stronger natural presumption of the right to life’ (2). The Christian doctors’ publication, Doctors and Ethics, argued: ‘How right that Leslie Burke should want the GMC guidance changed, to be assured that his life will not be cut short by doctors.’
The pro-life website LifeNews.com cited a poll conducted earlier this month that found only one-third of respondents favoured guidelines for doctors allowing them to withhold food and water from patients who could no longer make their own medical decisions. Another website, Lifesite.net, talked about the ‘outrageous’ contention of the GMC that feeding is treatment that can be withdrawn. ‘The survey shows that this humane ruling has the backing of the public’, Dr Mary Knowles, chair of First Do No Harm, told the Daily Mail. Disabled groups also celebrated the original decision. At the time of the judgement last year, Bert Massie, chairman of the Disability Rights Commission (DRC), said: ‘This judgment provides genuine protection for disabled people with serious long-term conditions. They want health professionals to do as much as possible to preserve life – as they would for non-disabled people.’ (3)
Burke’s fears have some basis to them. He and the DRC are right to point to the experiences of Jane Campbell, a disability rights commissioner, who had to fight against doctors’ assumption that she would not want to be resuscitated should she go into respiratory failure (see Ten myths about assisted suicide, by Kevin Yuill). Too often today human life is defined as a burden, and quality of life measured in terms of biological resources rather than innate worth. Burke and others may be right to suspect doctors of too often erring on the side of death.
But there is more to this case than meets the eye. There are reasons to question the wisdom of allowing the patient complete discretion over their treatment. As some have pointed out, Leslie Burke wished to live while Dianne Pretty, who suffered from a similar condition, wished to die. Both expressed the fear of an ‘undignified’ death.
The Catholic Bishops Conference of England and Wales noted that the original decision elevated ‘the principle of autonomy to an “absolute”, so that in the provision of ANH and other life-prolonging treatment, doctors must regard the patient’s wishes as simply “determinative”’. If a patient chooses to die or insists on pointless treatment, must a doctor accede to their wishes? It is known that Justice Munby has, in the past, expressed approval for the legalisation of assisted dying, even representing assisted dying advocates in debates. This judgement may yet allow assisted dying through the backdoor.
By far the worst effect of judgements such as these, however, will be to damage the doctor-patient relationship – as the GMC has pointed out. There appears to be a conspiracy of assisted suicide advocates, disability rights campaigners, and patients groups to restrain by law doctors’ power to make decisions about patients’ treatment. All express a nightmarish anxiety that doctors will either keep us living when we no longer wish to, or kill us when we wish to live.
A raft of regulations governing the actions of physicians is both self-defeating and harmful. It is likely to fuel an atmosphere of suspicion and recrimination between doctors and patients, which will benefit nobody. In treating patients, doctors, with extremely rare exception, make decisions professionally and with appropriate kindness and decency. They wish to do what is best for their patients – why would they do otherwise? (Unless we imagine comic-book conspiracies of monstrous, greedy corporations who wish to achieve bloody domination over the entire globe and secretly pay off doctors to do their nefarious deeds….)
The doctor-patient relationship is not like a legal contract between equals, and nor should it be. President, prime minister or king must all bow to their doctor’s will. The doctor wields power over the patient, and must do so in order to do his or her job effectively. Moreover, patients relate to their doctors as individuals, rather than simply representatives of a profession doing a job, as with plumbers or lawyers. Patients must trust their doctors, and doctors must respond to individual patients with their specific symptoms and situations. Doctors need to make difficult decisions, in circumstances that lawyers cannot possibly foresee. The patient ‘control’ sought by Burke and others is illusive; in reality, doctors will surrender some of their necessary power to lawyers.
In fact, lawyers seem to have replaced priests as attendants to the death-bed scene. Many, like Burke, no doubt wish them to be present to ensure that doctors carry out the wishes of the patients. But placing death under public scrutiny will destroy its essential privacy, and the important common understanding between doctor, patient and family. Those concerned with ‘dignity’ and ‘autonomy’ would do well to remember the protracted and very public death-bed scene of Terri Schiavo, who will be remembered as a breathing corpse rather than as the person she once was.
Rather than legally restraining the hand that holds the scalpel, Leslie Burke’s anxiety would be best addressed by once more elevating human endeavour, human relationships and human experience – in other words, human life – to its proper place at the apex of our common values.
(1) Maxine Frith, ‘Doctors appeal over ‘right to live’ judgment for terminally ill man’, Independent, 17 May 2005
(2) ‘A right-to-live case’, Daily Telegraph, 17 May 2005
(3) Cited in James Meikle, ‘Victory for Right-To-Life Man’, Guardian, July 31 2004
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