The Magazine

What Living Wills Won't Do

From the April 18, 2005 issue: The limits of autonomy.

Apr 18, 2005, Vol. 10, No. 29 • By ERIC COHEN
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Imagine, for example, that a person with advanced Alzheimer's is diagnosed with cancer, and there is a burdensome treatment (like radiation) that might extend the person's remaining life from three months to six months. In this case, family members seem morally justified in rejecting the treatment, even knowing that an earlier death is the likely result. But they don't reject treatment so that the patient will die; they reject it so that the patient will not suffer excessively as death arrives. They choose minimum discomfort, not death. By contrast, if the same Alzheimer's patient gets an infection that is easily treated by antibiotics, it is hard to see any moral ground for withholding treatment. Holding back ordinary care is not the same as euthanasia, but it is still a choice that hastens death as its aim.

In reality, many dementia cases involve multiple illnesses, with uncertain prognoses, and a menu of treatment options. Often, there are various morally justifiable choices. Personal values do matter. But what is always needed is a moral framework that governs such private decisions, based on the belief that every life is equal, and no life should be treated as a burden to be relinquished, including one's own.

Given the infinite complexity of these clinical situations, the scope of the law should always be limited. What is legally permissible is not always morally right, but what is morally wrong should not always be outlawed. Nevertheless, it is foolish to ignore the extent to which the current legal framework shapes how people make private decisions, or to ignore the proper role of the state in setting certain minimum boundaries. Legally, no competent person should ever be forced to accept medical treatment in the present that he does not want. Legally, no one should have the right to commit suicide or procure assistance in doing so, and no one should be killed or forced to die against his will or that of his guardians. And legally, guardians should not be forced to implement living wills that aim at death as their goal.

As for the courts that are called upon to settle certain cases, they will need some political guidance or governing principles to do so. For example, what if a tenured professor of bioethics, unable to bear the loss of his cognitive powers, leaves written instructions not to treat any infections if he ever suffers dementia? Decades later, now suffering from Alzheimer's, the former professor is mentally impaired but seemingly happy. He can't recognize his children, but he seems to enjoy the sunset. He's been physically healthy for years, but then gets a urinary tract infection. All his family members believe he should be treated.

Should the state intervene to prohibit antibiotics--to protect the incompetent person's "right to die"? Or should the state leave the family members alone, so they can do what they believe is in the best interests of the person the professor now is? If Andrew Sullivan and other critics are worried about "theocons" using the power of the state to undermine the right to self-determination, are they willing to use the power of the state to impose death when families choose life? Is this what their idea of "autonomy" really requires?

And this leads us, finally, to the ethics of medicine. We have already gone very far in turning medicine into a service industry and doctors into technicians who simply use their skills to do our bidding. The physicians who perform abortions when the life and health of the mother are not in danger, or the cosmetic surgeons who give breast implants to healthy women, or the doctors who prescribe growth hormone for kids of average height are not really practicing medicine; they are serving desires. Most doctors take their medical oath seriously, struggling daily and often heroically to provide for those entrusted to their care. But some have succumbed to various forms of utilitarianism, or simply believe that people with cognitive disabilities are already humanly dead. In cases like Terri Schiavo's--a disabled woman, not dead or dying, whose feeding was keeping her alive without imposing additional burdens--it is hard to see how any doctor could ethically remove a feeding tube. And if we are to respect medicine as a moral profession, no court should compel doctors of conscience to do so.

As America ages and dementia becomes a common phenomenon, the dilemmas that the Schiavo case thrust onto the nightly news will only become more urgent and more profound. As a society, we will need to navigate between two dangers: The first is the euthanasia solution, and the prospect of treating the old and vulnerable as burdens to be ignored, abandoned, or put to sleep at our convenience. The second is that the costs of long-term care will suffocate every other civic and cultural good--like educating the young, promoting the arts and sciences, and preserving a strong defense.