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The puzzle of the permanently unconscious.

The Laws of Ireland

The Republic of Ireland has been the last country in the European Community legally to prohibit abortion, specifying no permissible exceptions. An amendment to the Irish Constitution, passed by national referendum in 1983, recognized a right to life of the unborn "with due regard to the equal right to life of the mother." But on 5 March 1992 the Supreme Court held that abortion is legal in Ireland in limited cases.

The Supreme Court judgment followed after the Attorney General enjoined a fourteen-year-old rape victim from leaving Ireland to get an abortion in England. Her intention became known to the police because the girl's family asked them the official procedure for procuring DNA samples from fetal cell tissue for use as evidence against the alleged rapist. Once they knew of the girl's intention to get an abortion, and given the 1983 amendment for protection of fetal life, the police felt obliged to inform the Director of Public Prosecution, who in turn notified the Attorney General's office.

A high court judgment upheld the Attorney General's injunction: the right to life of the fetus was granted priority over the girl's right of freedom to travel for legal abortion services elsewhere. The Supreme Court judgment, however, overturned the high court by a vote of 4 to 1, interpreting the 1983 amendment with reference to the girl's age and the evidence that there was a "substantial risk of suicide" following her rape, coupled with severe depression brought on by the injunction preventing her from traveling outside Ireland for an abortion.

The Court's judgment has placed an onerous responsibility on legislators to specify more precisely the conditions under which abortion may be permitted in Ireland. Doctors and hospitals are already contemplating the ethical implications and practical consequences for health care institutions that might result from any forth-coming abortion legislation.

The abortion debate in Ireland has now entered a new era, in which its terms have changed radically. There is considerable uncertainty about legislative outcome.--Dolores Dooley, University College, Cork, Ireland.

Are treatment decisions for the permanently unconscious patient a central issue or a peculiar obsession in bio-ethics? Are the permanently unconscious "severely disabled" under the terms of the Americans with Disabilities Act? Can the courts pronounce permanently unconscious patients dead, thereby making their organs available for transplant? Ought legislatures to redefine death so that the permanently unconscious are included under neurological criteria for death? Ought legislatures to redefine "terminal illness" to include permanent unconsciousness? Do physicians--or hospitals--have to provide ICU care for permanently unconscious patients if they believe that doing so is professionally wrong? Not in the best interests of the patient? Not in the best interests of the health care system or the institution from a financial perspective? Is providing treatment for a permanently unconscious patients even if their advance directives say they want treatment no matter how dire their condition? Are permanently unconscious patients 'persons' in a philosophical sense?

What do we know about these patients and their condition? If continued treatment is a problem, how big a problem is it? Customary (and unreferenced) estimates are that there are 5,000-10,000 permanently unconscious patients in the U.S. The American Medical Association estimated, in 1990, that there were 15,000-25,000 patients in persistent vegetative state (PVS) in the U.S.A. 1992 research study found 3 percent of the 1,611 patients in four Milwaukee nursing homes in persistent vegetative state. Three percent of the 1.3 million nursing home residents in the U.S. translates to 39,000 patients in PVS.

Why are these 5,000 to 39,000 patients who are permanently unconscious continuing to receive treatment? Polls and studies often show as many as 30 percent of people would want life-sustaining treatment, given such a diagnosis. Surrogates too want treatment for their permanently unconscious relatives. One study showed that 78 percent of family members who had a seriously ill and elderly relative wanted treatment for that relative continued even if the patient became permanently unconscious. Other researchers found that of the thirty-three permanently unconscious patients in their study, more than half were visited daily by family members, and that from 48 percent to 91 percent of those families wanted continued life-sustaining treatment ranging from surgery to antibiotics to feeding. A large majority of these family members also thought that the PVS patient was aware of light and dark, of pain, of conversation, and of their presence--a perception not supported by the American Academy of Neurology's conclusion that the patient in PVS does "not have the capacity to experience pain or suffering" (nor to experience conversation or the presence of others, presumably).

Perhaps those who want continued treatment are concerned that a reliable diagnosis is not possible. The American Academy of Neurology has stated that PVS can be diagnosed in one to three months "with a high degree of certainty in cases of hypoxic-ischemic encephalopathy." A recent review of 650 cases of patients in vegetative state resulting from head injury suggests that reliable diagnosis is possible within two years, and that recovery of consciousness after two years "must be regarded as a rare event." In the study of PVS patients and their family members discussed above, the patients' vegetative state had lasted from one to seven years. The researchers concluded that family members "understood the patient's medical condition and ... what to expect in the future," and only one relative thought that the patient's condition was likely to improve.

If a substantial minority of future patients and a significant number of current surrogates want continued treatment, why is there so much discussion about not treating the patient in PVS? Why do we not look at this decision as we look at any other, leaving it to the patient's advance directive or the surrogate's judgment?

In the U.S. and in Canada, families have gone to court (or to the news media) to win the right to continued treatment or at least to continued treatment in the acute care setting for the PVS patient. Minnesota's Wanglie case made national headlines, but less was heard about other similar cases last year. In Georgia, a hospital went to court in the case of a thirteen-year-old girl who was "chronically and irreversibly stuporous." The parents disagreed about whether treatment should be stopped, but the hospital is reported to have wanted it stopped even if the parents agreed with one another about continuing treatment. In Florida, the family of a man in PVS went to the news media--not the courts--when the hospital refused to provide dialysis. The hospital capitulated. In Quebec, the family of a sixty-five-year-old man in PVS after a stroke went to court when the physicians wanted to stop respirator treatment and move him out of the ICU. Given the adverse publicity that hospitals and physicians are likely to receive if they are involved in a case in which they appear to be denying life-sustaining treatment to a patient, we have to assume a powerful impulse behind their reluctance to continue treatment.

Is it just a matter of dollars efficiently spent? Of economic meanness? Or is it a cri de coeur about our value-fractured society? In the health care system that is in our future, some treatments will not be given. If we can't agree about not treating the permanently unconscious patient, what chance is there of ever agreeing to any decision not to provide treatment?--Judith Wilson Ross, associate director of the Program in Medical Ethics, UCLA Medical Center.
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Title Annotation:bioethics
Author:Ross, Judith Wilson
Publication:The Hastings Center Report
Date:May 1, 1992
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