The Magazine

The English Patient

From the May 30, 2005 issue: Leslie Burke wants to live; the National Health Service has a second opinion.

May 30, 2005, Vol. 10, No. 35 • By WESLEY J. SMITH
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London

THE MOST IMPORTANT BIOETHICS LITIGATION in the world today involves a 45-year-old Englishman, Leslie Burke. He isn't asking for very much. Burke has a progressive neurological disease that may one day deprive him of the ability to swallow. If that happens, Burke wants to receive food and water through a tube. Knowing that Britain's National Health Service (NHS) rations care, Burke sued to ensure that he will not be forced to endure death by dehydration against his wishes.

Burke's lawsuit is even more important to the future of medical ethics than was the Terri Schiavo case. Schiavo was dehydrated to death--a bitter and profound injustice--because Judge George W. Greer ruled both that Terri was in a persistent vegetative state and (based on statements she allegedly made during casual conversations some 20 years ago) that she would not want to live under such circumstances. In other words, Terri Schiavo lost her life in order to safeguard her personal autonomy, though she never made the actual decision to die.

But Burke, who is fully competent, worries that his wishes will be ignored precisely because he wants food and water even if he becomes totally paralyzed. Receiving food and water when it is wanted certainly seems the least each of us should be able to expect. But, it turns out, whether Burke lives or dies by dehydration may not be up to him. According to National Health Service treatment guidelines, doctors, rather than patients or their families, have the final say about providing or withholding care.

Burke won his case at the trial court level when a judge ruled that denying the tube-supplied food and water a patient wants "would be a breach of claimant's rights under . . . the European Convention on Human Rights." This should be uncontroversial. But the General Medical Council, the medical licensing authority, appealed, joined by the British government.

Why do Britain's medical establishment and government insist that Burke be denied a right to decide whether he receives tube-supplied food and water? It all boils down to two concepts that are increasingly intertwined in modern bioethics theory and practice. First is the so-called quality-of-life ethic that presumes to judge the worth of patients' lives according to their mental and physical capacities. Under this view, doctors or bioethicists may judge a life to be of such low quality that it is not worth extending, irrespective of the patient's wishes. The second issue is money--an especially potent factor for England's increasingly strained socialized medical system.

Accordingly, the secretary of state for health argued before the Court of Appeal that while patients have the right to refuse life-sustaining treatment, they don't have a corresponding right to receive it. Even though the Burke case does not involve high tech medical procedures--he is not asking for a respirator or kidney dialysis, after all--the government claims that the trial court's ruling undermines the authority of doctors to make the "clinical judgment" about whether a patient's "treatment would be of benefit," based at least in part on the question of "the resources which are available." The right of doctors to exercise such control is "absolutely fundamental to the day-to-day functioning of the NHS."

In support of the government's position, the secretary of state filed a statement by Elizabeth Woodeson, the head of scientific development and bioethics at the Department of Health. Her testimony demonstrates the threat that contemporary bioethics poses to the lives of vulnerable patients. As Woodeson explained, the National Health Service established the National Institute for Health and Clinical Excellence (given the creepily inappropriate acronym NICE) to issue "clinical guidelines" that blend efficacy of outcomes, quality of life judgments, and economics:

An assessment is made of the cost of the treatment per additional year of life which it brings, and per quality adjusted life year (QALY) . . . which takes into consideration the quality of life of the patient during any additional time for which their life will be prolonged. The clinical and cost effectiveness of the treatment under review is then used as the basis for a recommendation as to whether or not . . . the treatment should be provided in the NHS. . . . The Secretary of State believes that . . . clinicians should be able to follow NICE guidelines without being obliged to accede to patient demands. . . . If that principle were undermined, there would be considerable risk of inefficient use of NHS resources.