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Decide Now How You Don't Want to Die : Medicine: By signing an 'advance directive,' Mr. Nixon and Mrs. Onassis spared their families incalculable heartache.

May 29, 1994|NEIL S. WENGER and MARTIN F. SHAPIRO | Drs. Neil S. Wenger and Martin F. Shapiro teach medicine at UCLA

Richard Nixon and Jacqueline Kennedy Onassis may have agreed on little during their lives, but in dying they chose a similar route, setting an important example: They anticipated death and chose to meet it without aggressive medical care.

The former President suffered a massive stroke, a disease quite different from the former First Lady's aggressive tumor of the lymph nodes. Mr. Nixon's illness came on suddenly, while Mrs. Onassis had received treatment for several months. The key to the decision made by each of these individuals was to consider in advance how they wanted to spend their last days. Each completed an "advance directive," a document that states an individual's wishes regarding medical care, should he or she be unable to participate when decisions have to be made. Because of this advance planning, family and physicians knew that Mr. Nixon and Mrs. Onassis desired a focus on quality, not quantity, of life when the prognosis became bleak. The resultant medical care allowed death to come in a "dignified" way.

Making advance decisions about medical care is difficult for Americans. It means explicitly considering prognosis, the risks and benefits of treatment and the effects of illness and treatment on quality of life. What's perhaps most difficult is that such decisions require a recognition of the limits of modern medicine, a concept blurred if not buried in the nearly constant reports of new cures, scientific breakthroughs and unique, remarkable cases. Making future medical decisions may mean coming to terms with data on how likely a treatment is to fail without necessarily "giving up hope." Such decisions may also mean letting go of the expectation for a miracle.

These decisions are difficult because death is often the only alternative to aggressive care. Mr. Nixon could have been placed on a mechanical ventilator to breathe for him, perhaps extending his life substantially and permitting some neurologic recovery. It is not possible to exclude the slim chance of full recovery to his prior state of health, although the probability of such an outcome is so low that it would have to be regarded as miraculous. But the downside also must be considered: the days or weeks or months spent uncomfortably in the intensive-care unit, the much greater likelihood that any recovery would be to a severely impaired state and the probability of future suffering.

Mrs. Onassis could have chosen from even more available options. While dying from a tumor that would not respond to therapy, she developed a pneumonia; she had a treatable illness in the setting of a rapidly terminal disease. The physicians could have treated, and perhaps cured, the pneumonia, only to have Mrs. Onassis die of the tumor. If she lived long enough after surviving the pneumonia, Mrs. Onassis could have searched for another therapy for her tumor.

There is always another, though less likely to be successful, treatment option. And if not, there's probably an experimental protocol. For some people, the "last resort," is the option preferred. But patients and families making decisions at the brink of life must recognize that these are exceedingly likely to be unsuccessful and result in a death in the hospital. Mrs. Onassis chose to die at home, in familiar surroundings, encircled by family.

This is not to say that, given similar clinical circumstances, all patients would or should choose a similar course, although surveys of Americans about end-of-life preferences suggest that many, if not most, would have made similar choices. However, without advance discussions, the families and physicians of such individuals would not know these patients' preferences. As a result, these individuals would have ended up in intensive-care units on mechanical ventilators, most dying there days or weeks later.

Many patients whose preferences are not known will die while receiving aggressive care. Vast medical resources are expended in the process of these deaths. In part due to aggressive care at the end of life, the United States invests about 1% of the gross national product in intensive care, far more than any other nation. This is not to say that we should not employ intensive care, utilize modern technology and marvel at medical breakthroughs--only that such advances must be used in order to reach the patient's goals, not necessarily just to prolong life.

In the context of usual medical care, the end-of-life decisions of Mr. Nixon and Mrs. Onassis were special. May we learn from their example and examine our values, scrutinize our medical care and discuss and complete advance directives for future care.

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