Ethics at the Edges of Life

There is a case in Philadelphia in which a child with disabilities is being denied a kidney transplant. Her parents claim that it is because she is mentally handicapped. It's hard to know exactly what is going on here, because of the stringent laws protecting patient privacy. We don't know, for example, whether the child also has associated physical disabilities that make it less likely for the kidney transplant to be successful. We don't know how well she would respond to the treatment.But the issue is in fact an issue that has been discussed before, in ways that those engaged in the current discussion might find profitable to consider. The issue first came up in the 1960s with the "Seattle God Committee," in which a committee decided who would have access to kidney dialysis. The committee considered not only issues pertaining to medical success but also social worth. Whose life would be most worth saving? The lives that the (mostly middle class) committee thought saving were, not surprisingly, most like their own. The committee came under heavy criticism, from both the public and members of the nascent field of medical ethics.Treatment of the seriously mentally handicapped has also been discussed a great deal, in the seventies too. One of the most famous cases was that of Joseph Saikewicz, a profoundly mentally handicapped man in his 60s who got cancer. He was unable to make decisions for himself. His guardian did not want to give him chemotherapy, although it would be a course of treatment that most non-handicapped people his age would undergo. In a controversial decision, the court decided that it was not in his best interest to receive the treatment-in part because of the way he would experience its discomfort and trauma.The Roman Catholic tradition does not teach that life has to be prolonged at all costs -- we are not a vitalist tradition. The old-school manualists would say, for example, if the only way to save your life is to get exotic treatment far from home for a prolonged period, you don't necessarily have to do it -- especially if you're a homebody. It is an "extraordinary" means -- at least for you, and you don't need to take it.Things are more complicated however, when we're dealing with adult incompetent patients and with children -- because neither group can make decisions for themselves. It's especially complicated when we get to children with disabilities: how do we sort out legitimate medical concerns versus illegitimate devaluing of "less than perfect life"? If for example, the syndrome from which this girl suffers significantly reduces the chance that the kidney transplant will be successful, does that matter? If her life expectancy is much shorter than another child's (whether or not she is mentally disabled) does that matter?There are a number of good resources on this topic, for those who are interested.On the general issue of ordinary and extraordinary means and incompetent patients, see the debate between Kevin Wildes and Gilbert Meilaender in Theological Studies. (Google their names at this website).For one of the best efforts to grapple with treatment for children with disabilities, see Paul Ramsey's Ethics at the Edges of Life -- which attempts to work out a "medical indications" policy that avoids what he believes to be nefarious quality-of-life judgments.Finally, of course, we have a different type of "conscience" problem. A transplant requires the cooperation of an entire medical team. It appears that the doctors believe, in conscience, it is morally wrong to do this procedure. Are we going to make them do it?

Cathleen Kaveny is the Darald and Juliet Libby Professor in the Theology Department and Law School at Boston College.

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