January 1984 V/5
THE BABY DOE LEGACY
In the spring of 1982 in Indiana, an infant boy born with Down's Syndrome and esophageal atresia died because food and water were withheld with approval of the local court. The infant became known as Baby Doe and in response to the case, the federal government (HHS) has issued regulations seeking to protect the lives of handicapped infants under the Civil Rights Act (45 CFR, Part 84, Jan.l2, 1984). Calling for infant care review committees (ICRC) to assist in ethical decision making and the posting of signs containing relevant phone numbers where violations for withholding care from infants on the basis of handicaps may be reported, the regulations modify significantly current procedures. But the apparent assumptions of the document are even more significant than the regulations. They are:
1. Common standards or principles for ethical action can be developed for our pluralistic society. Ethics, then, is not based upon person intuition nor upon an emotional response to a conflict situation; rather, it is based upon a reasoned and systematic evaluation of human need. A just and compassionate application of the standards in question depends upon an ability to understand the grounding of the principles and an accurate knowledge of the facts of the particular case. This is a long overdue realization.
2. For centuries society has respected the responsibility of parents, with the advice of physicians, to decide within reasonable limits the proper treatment for their infants suffering from severe birth defects. Now other people serving on infant review committees have the right to advise parents and hospitals in some cases must put the case before the court. This is a radical change; is it needed? The federal government, supported by several disability organizations, such as the Down's Syndrome Congress and the Spina Bifida Association, and citing several articles and surveys assumes that physicians have abused their power.
3. Ethically speaking, the most significant parts of the document are the sections on Principles for Treatment of Disabled Infants and Guidelines for Applicability. The main statements are:
a. "Health care providers may not, solely on the basis of present or anticipated physical or mental impairments of an infant, withhold treatment or nourishment from the infant who in spite of such impairment will medically benefit from the treatment or nourishment" (1653).
b. Consideration such as anticipated or actual limited potential of an individual and present or future lack of available community resources are irrelevant and must not determine the decisions concerning medical care" (1652).
c. "This standard is very strict and it excludes consideration of the negative effects of an impaired child's life on other persons, including parents, siblings and society" (1652).
The key idea of the document is that treatment must be given if it is "medically beneficial." What does this mean? Judging from the examples and content of the document, the document assumes treatment should be judged medically beneficial if it will prolong life for a significant time. Only when "medical care is futile and only prolongs the act of dying" may treatment be withheld; in doubt if treatment is medically beneficial, "a presumption always should be in favor of treatment" (1652).
Thus the judgment on "medically beneficial" seems to consider only one human function, the physiological. Any disability, no matter how severe, in the psychological, the social and the cognitive-affective functions, may mt be the basis for withholding treatment (cf. b). Moreover, life must be prolonged no matter what the cost to community or family (cf. c). I submit that this method of ethical decision making is erroneous as well as contrary to the Catholic tradition in medical ethics. I refer to the Catholic tradition, not because it is normative for our society, but because it represents an acknowledged pro-life position. (1) The Federal norms are more strict and rigid than the Catholic tradition.
To understand my position, recall that the Catholic tradition does not make physiological existence an end in itself. We live in order to fulfill the goal of life. No matter how we define the goal of life, e.g., happiness, serving our neighbor, serving God, doing God's will, reaching our potential, we must have, at least potentially, some degree of psychological, social, cognitive and affective function as well as physiological function. These functions over and above the physiological are considered when making decisions about care for self or others. When making judgments about whether to prolong the life of older people, we consider these functions frequently. When an older person is in an irreversible coma, thus lacking potential for cognitive-affective, social and psychological function, we determine that life-support systems may be removed, even though physiological function could be prolonged.
Another criteria of Judeo-Christian ethics for prolonging life in presence of serious pathologies is whether living will be a grave burden for the person. Would prolonging life involve excruicating pain, would surgeries deplete financial resources that one would prefer to devote to one's children, would continued care present a continuing grave burden on the rest of the family? If so, one may forego life-prolonging treatment and request to be allowed to die.
When making a proxy decision for medical care of another, whether that person be elderly and comatose or a mere infant struggling for life, the same ethical principles should be used. The proxy puts himself or herself in the place of the patient and asks, "What is beneficial for me as a total human person?" Does any responsible and reasonable person determine what is beneficial for himself or herself by abstracting from family and society? I think not. None of us have the right to burden excessively the people with whom we live, True, infants as opposed to older people are difficult to prognose, so we must give them the benefit of the doubt. But the decision must take into account more than capacity to prolong physiological existence.
Conclusion
Clearly, a mistake was made in the Indiana Baby Doe case. But let us not compound the mistake. Handicapped infants must be protected because life is a great gift. Review committees could help parents, physicians and hospital administrators make compassionate and ethical decisions. But all concerned must make decisions upon sound ethical principles. I am open to correction, but it seems that the federal government has not provided the proper principles and guidelines for the task.
Kevin O'Rourke, OP
Footnote 1. "On Euthanasia," Cong. Doctrine of Faith. 6/26/80; cf. Plus XII, "Prolonging Life, II 11/24/57.
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