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University of Louisville




I feel very comfortable talking about human rights, civil rights, the role of individual privacy, autonomy, and dignity in making decisions about oneself. Yesterday's topics concerning adults and privacy, however, were much easier than today's, which deal with children. It's not difficult to argue for the right of competent adults, whether it be in Texas' or California,2 to make their own decisions. As much as we may or may not agree with their decisions, at least arguing that -competent individuals like Dax Cowart and Elizabeth Bouvia have a right to make their own decisions makes a lot of sense; the concept promotes liberty and yields a relatively clear rule to follow.

This morning, however, we are going to talk about handicapped infants, newborns especially, and the decision whether or not to provide them with what is often life-sustaining treatment. Those decisions are much, much more difficult. It's harder to define a general rule and say that any side is right or wrong because the "right" answer frequently seems to depend on one's vantage point. Some people try to make decisions from the point of view of the newborn. I will argue that that is correct. Others say that since the decision is so hard, you have to let the people who are most involved in the decision, that is, the parents who must live with the results of the decision, make it. Other people argue that the decision requires medical expertise, and should be based on a diagnosis or a prognosis. You need a feel for how a patient is going to do, so really the doctor must be the major decision-maker. Others argue that the doctor and the parents together should make the decision. Still others think that we should go to court and let a judge make these decisions because they involve life and death for a newborn who can't protect himself or herself.

Recently we have had proposals from the Reagan administration,3 Baby Doe squads and hotlines, as well as counter-proposals from the American Academy of Pediatrics, which suggested, among other proposals, hospital ethics committees.' I'm going to talk about these approaches and the advantages and disadvantages they offer. What we should be doing today is developing useful substantive rules and procedures for decision-making.

The main thing to consider, it seems to me, is that currently there is no formal mechanism for making decisions. The doctors want to do one thing, while the parents want to do something else. There usually is no advocate for the child. The nurse's role may be ambiguous, and her views may not be considered at all. In this situation, you have a triangle that involves the doctors and medical staff, the parents, and the child. Three-way relationships tend to collapse into two-way relationships; in this case, the child's interests usually collapse into those of the parents. Instead of having three parties looking out for their own interests, you have only two parties trying to arrive at a decision. In most cases, the physicians will defer to the parents. But this isn't always true. There are physicians who take cases to court, who argue with parents, who call in consultants, who consult ethics committees; obviously a lot has happened in the last ten years, and that's what I want to talk about.

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