Saturday, June 04, 2005

And Now We Face a New and Improved Version of the Schiavo Case

I came across this story in the print media media, though it is available online at the Daily Standard. It is the story of an English gentleman, Leslie Burke, who is plagued with a rather strange and dangerous ailment, one that will likely place him, one day, in nearly the same vulnerable position as Terri Schiavo vis-a-vis the governing authorities. But to preempt the state, he's taken some measures, only the state is fighting back. Here are some excerpts from Wesley Smith's article in the Weekly Standard:

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....

...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.
...In this darkening atmosphere, the Leslie Burke case could not be more important. If Burke loses on appeal, patients in Britain will be stripped of the basic human right to receive food and water through a feeding tube. Such a ruling should send a cold shiver through disabled, elderly, and dying patients everywhere.

Moreover, given the increasing propensity of some Supreme Court justices to look overseas when deciding issues of American law, a Burke loss could plausibly end up reinforcing futile care laws in this country. There will undoubtedly be protracted litigation on this issue in coming years. How Leslie Burke fares may determine whether futile care theory is allowed to metamorphose from ad hoc health care rationing into an explicit--and expanding--duty to die.

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