Death and Candor

From the Committee on Ethics at the Stanford University Medical Center and from the Roman Catholic Diocese of Providence have come new, constructive, helpful guidelines for families and physicians dealing with the agonizing decisions related to the terminally ill.

The 48 members of the committee at Stanford have written what may be the most helpful of all the commentaries until now on the ways in which decisions, including those to provide or withdraw life-support systems, can best be made. Its publication in the New England Journal of Medicine on Jan. 7 will assure that it has, as it should, a national effect.

Bishop Louis E. Gelineau of Providence, R.I., at almost the same time has defended a right-to-die opinion of a diocesan theologian that clarifies the distinction between euthanasia and the artificial prolongation of dying. Father Robert J. McManus had affirmed the morality of withdrawing life-support systems, including food and water, from a patient comatose for two years, arguing that the interventions merely have served to prolong the process of dying.

Among the virtues of the Stanford University Medical Center committee statement is the candor with which it deals with the difficulty of handling decisions affecting the dying. It is hard for the patient, family, doctors and nurses. The paper urges doctors having difficulty in communicating with patients and their families to enlist the help of "outside facilitators."

"Most of the ethical dilemmas involved in life support can be avoided with careful attention to certain important points," according to the report. "Recognize that authority in medical care rests with patients or their legal surrogates. Support them in exercising this authority. Support patients' rights, particularly the right to give informed consent. Emphasize effective communication, and be aware of and avoid the circumstances that tend to impair it."

The report emphasizes that it is easier to make appropriate decisions to withhold life supports than it is to withdraw them once they are in place.

"Once any medical intervention is begun in grave illness, withdrawing it in order to avoid an agonizing dying process requires a direct action that may result in a death. However necessary and humane such an action may be, those forced to make such decisions and those who carry them out are inevitably left with disturbing feelings. Furthermore, medications need to be evaluated carefully. In particular, problems may arise from the use of antibiotics or steroids to treat infections or cerebral edema. Comatose, hopelessly ill people may be pulled back needlessly from a painless death to live out an extra few days or weeks in pain and indignity. Perhaps some physicians, frustrated by underlying illnesses that defy medical intervention, gain a sense of control by treating conditions they can treat. In addition, if those responsible for the patient want every possible measure taken to keep the patient alive, professionals should comply with this request at first. If the desire to persist in treatment seems inappropriate, a direct, logical challenge by the professional will often fail, whereas a nonjudgmental exploration of underlying feelings can result in sounder decision-making."

The issue of food and water raises special problems, according to the Stanford group. "Unless a patient-oriented goal has been defined, it is not acceptable to begin intravenous therapy for 'hydration and nutrition,' " the committee concluded. "The withdrawal of basic life support, such as hydration or nutrition by intravenous lines of feeding tubes, is ethically controversial and complex. Although most people eventually feel at peace with stopping more technical medical interventions, these basic measures are regarded more as signs of caring than as treatment. No one is comfortable with the thought that a loved one may 'die of thirst' or 'starve to death.' Indeed, legal sanctions notwithstanding, families will feel guilty if these feelings are not explored and resolved." The key is "clarifying the patient's interests." Courts in three states, including California, have treated the withdrawal of food and water "in the same manner as the withdrawal of advanced life-support systems," the study notes.

The objective of the ethics committee's paper was to identify a standard of practice, Dr. Thomas Alfred Raffin, chairman of the committee, told us. It was unanimously adopted by the 48 members--remarkable in itself given the committee's diversity, most of them professionally involved in health care in one way or another but among them a rabbi, a hospital chaplain, the acting dean of the university's Memorial Church, a sociologist, a gerontologist, a philosopher, a law professor and community representatives.

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