The fear of lingering mindlessly tethered to machines is an unfortunate byproduct of modern medical technology. It also helps explain the grim fascination with Dr. Jack Kevorkian, who was acquitted last week of violating Michigan’s ban on assisted suicide. Also last week, a federal judge in Seattle overturned Washington state’s ban on assisted suicide, ruling that a dying person has just as much right to overtly end his life as he does to refuse medical care. The U.S. Supreme Court officially recognized that right in the 1990 Nancy Cruzan case, provided there is clear evidence of the patient’s wishes. Since then, Congress has passed the Patient Self-Determination Act, requiring hospitals, nursing homes and HMOs to inform patients of their right to refuse end-of-life treatments.
In technical terms, a living will is a legal document specifying which life-sustaining measures you want and don’t want if you are unable to communicate yourself. Another version is a “durable power of attorney for health care,” in which you designate a surrogate to make such decisions for you. Curiously, while surveys show that some 90 percent of Americans support the concept of such “advanced directives,” only 10 to 20 percent have actually written them. Even then, the documents aren’t foolproof. Some are so broad or so narrow that they don’t fit the medical condition at hand. Some are left in lawyers’ offices, safe-deposit boxes or sock drawers and are unavailable when a life-or-death situation occurs. “People need to discuss these documents with the people they care about, and they need to be accessible says Ron Buford, president of the Cleveland-based National Electronic Archive of Advanced Directives, which sells a wallet-size card that customers can carry with them. Using a patient’s ID number. doctors can call the service and have his dying wishes taxed over.
Even the Patient Self-Determination Act has had little effect on the American way of death. Some hospitals take great care to discuss patients’ legal rights and options; others delegate the task to overwhelmed admissions clerks, and many incoming patients are too ill or too distraught to listen. What’s more, a survey by the Department of Health and Human Services found that even when patients did have advance directives, in 40 percent of cases the documents weren’t placed in their charts where doctors could find them. In a congressional hearing on the subject last week, several experts testified that rather than rely on vague pieces of paper, patients should discuss their views explicitly with doctors before they get sick, and that doctors should pay much more attention to matters of dying and providing simple comfort care. “These discussions just aren’t a high priority for doctors because they aren’t reimbursed for them, they aren’t trained for them and they are extremely uncomfortable about death,” said Dr. Melvin Kenner of Emory University.
The push to control health-care costs may advance the living-will movement further. A study at Thomas Jefferson University in Philadelphia found that the hospital bills of dying Medicare patients who had advance directives averaged $65,000 less than those without them. Still, the best reason to sign a living will is not to save money but to spare loved ones the agony of trying to guess, in the emotion and grief of a serious illness, what your dying wishes are.
