Death comes to everyone. To a few it comes suddenly and completely unexpectedly, but to most, it follows an opportunity for leave-taking and for directing to some extent the mode and timing of death."
With these simple opening words, the medical ethics commission issued a report this week that puts human beings--the people doctors call patients--back at the center of our discussions about life and death.
In 255 pages, the commission members have offered recommendations to allow terminally ill people the option of refusing "life-sustaining treatment." In the process, they have attempted to make technology once again subservient to humanity.
Their report comes out of a growing public perception of how the very experience of death has been changed by modern medicine. The same science that saves our lives, we are learning, has also isolated us at death and from death.
Once, as the commission notes, "everyone knew about death at first hand; there was nothing unfamiliar or even queer about the phenomenon." Once, "the 'deathbed' was a real place, and the dying person usually knew where he was and when it was time to assemble the family and call for the priest."
But today, 80 percent of us die in hospitals and nursing homes. The death bed is now made with hospital corners and the people assembled around us are physicians, nurses and technicians with their equipment. In that setting our final call may bring forth the cardiac-arrest team rather than the priest.
We can date our conscious understanding of this change from the controversy over the fate of Karen Ann Quinlan. The president's commission itself was called in that year, 1978, out of a general concern that we were allowing machinery to define life and death. We were being reduced to clinical material for the "heart-lung" machine.
Once it became obvious that modern technology could, in concept, keep our bodies breathing forever, we had to redefine and regain control over death.
There is now a median time of 29 months between the day a patient is told that he or she has a fatal disease and the moment of death. In that time period, 10 percent of Americans will face just the sort of conflict addressed in this report. As Morris Abrams, a cancer patient and chairman of this commission, said: "The time and manner of death is much more a matter of human decisions and actions than ever before."
Until recently, doctors have made these decisions, often alone. With our wonder of science, our belief in medical progress, and our anxieties, there was a tendency to let the specialists rule.
Many doctors, in turn, had become more committed to treatment and more attracted to machinery than to patients. As Lewis Thomas says in his elegant new book, "The Youngest Science," technology increased the distance between physicians and patients.
When doctors had few tools, Thomas writes, they liberally used the best one they had: touching. Now medicine is able to offer patients a drugstore of treatments and a workshop of machinery. But, despite its obvious benefits, what Thomas calls "the mechanization of scientific medicine" contributed to the alienation of doctors and patients, life and death.
"If I were a medical student or an intern just getting ready to begin . . . ," he writes, "I would be apprehensive that my real job, caring for sick people, might soon be taken away, leaving me with the quite different occupation of looking after machines."
This report, for all its complexity, begins to reset these priorities. It suggests that the patient has the right to choose medication that would alleviate excruciating pain, even if it would shorten life. It suggests that the patient has the right to refuse or to end treatment, and that the family can exercise that right if he or she can't.
The underlying message may be a humbling one for our age. Death is not just an accident, or a mechanical failure. And it reminds us of something else: there is a time for leave-taking.
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