The English Patient

NRO: Man Wants To Live; National Health Service Has Second Opinion

(Weekly Standard) 
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 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.