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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In other words, medical care is effectively rationed by the National Health Service under guidelines set by bioethicists based on their beliefs about the low quality of life of patients whom they have never met. While the views of patients and families are to be taken into account when deciding whether to provide treatment, they are not determinative.

This top-down approach is what Leslie Burke is rebelling against. He knows that many bioethicists have a low opinion of the quality of life of people with profound disabilities. Burke doesn't trust doctors, much less bioethicists, to judge whether his life is worth living. "I feel strongly that my body and my being are mine," Burke insisted when I visited him recently at his Lancaster home. "But my desire [to live] can be overridden" based on prejudice against the disabled. "I am no different than anybody else, but I am not seen that way anymore."

Adding heft to Burke's concerns: When I privately discussed his case with a prominent British physician who I expected would sympathize with Burke's views, I was taken aback when he told me crossly, "Burke is only thinking of himself rather than looking at the bigger picture." How thoughtless of him.

IT WOULD BE A MISTAKE to assume that Americans are safe from having life-sustaining treatment rationed like this just because we don't have a national health service. Burke is fighting a broader movement in the bioethics field, "Futile Care Theory," that is also gaining traction here. Futile care theory is a one-way street when it comes to patient autonomy and end-of-life care. Futilitarians assert that patients have an absolute right to refuse life-sustaining treatment but are not similarly entitled to insist that their lives be maintained. Indeed, under futile care theory, as under the NHS rationing approach, whether a seriously ill or disabled patient's request to be kept alive is granted depends on whether doctors and bioethicists see the patient's life as worth living and spending medical resources to sustain.

For the last several years American hospitals have been quietly promulgating futile care protocols that empower their ethics committees to authorize doctors to unilaterally refuse wanted care. These futile care policies are beginning to be imposed on unwilling patients and their families.

As is usually the case in such matters, the first victims are on the far margins. Thus, in Houston, Sun Hudson, a 5-month-old infant born with a terminal disability, was taken off a ventilator in March over his mother's objections based on a Texas law that defers to futile care theory. Under the law, once a hospital bioethics committee determines that the treatment should not be rendered, the patient or family has a mere 10 days to transfer the patient's care to another hospital. This can prove difficult in this era of managed care and HMOs, since the affected patients are usually the most expensive to treat. After 10 days without a transfer, the outcome is usually death following the unilateral withdrawal of treatment--as occurred in Sun Hudson's case.

In another Houston case, one with ironic echoes of Terri Schiavo, the wife of Spiro Nikolouzos wants tube-feeding for her persistently unconscious husband, based on his previously stated desire to live. But unlike Schiavo's, Nikolouzos's personal wishes are not deemed determinative: A hospital ethics committee voted to refuse to continue his tube-supplied food and water and ventilator support. He would have died, but a San Antonio hospital unexpectedly agreed to provide the care. Then its ethics committee also decided to cut off care, but Nikolouzos was transferred to a nursing home. For the moment, Nikolouzos is being allowed to stay alive. But the final decision about the matter isn't his wife's: Under futilitarian Texas law, it belongs to committees of bioethicists and doctors.

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.

Wesley J. Smith, a senior fellow at the Discovery Institute and an attorney and consultant for the International Task Force on Euthanasia and Assisted Suicide, is the author, most recently, of Consumer's Guide to a Brave New World.