In response to:
The Future of Baby Doe from the March 1, 1984 issue
To the Editors:
I believe that Peter Singer and Helga Kuhse have blundered morally in their review “The Future of Baby Doe” [NYR, March 1]. Consider the case of Baby Doe: he was born in Bloomington Indiana in 1982 with a malformed esophagus and Down’s Syndrome. Without surgery to open the esophagus he would not be able to eat. Though the surgery has more than a 90 percent success rate, the parents vetoed treatment. The family’s obstetrician, who advised the parents of this option, later testified that “These children [Down’s Syndrome] are quite incapable of telling us what they feel, and what they sense, and so on.” This is inaccurate: many of these children are only mildly retarded. They tend to be happy, alert, and articulate, and often are capable of employment, education, and literacy.
There was no way of knowing, at the stage that he died, that Baby Doe would have been severely retarded. Baby Doe was denied food and intravenous feeding. Nurses at the Bloomington Hospital, a pediatrician, and others filed suit to save the child, but the judge ruled that “there was no probable cause to believe that the baby had been neglected by his parents.” People came forward wanting to adopt Baby Doe, but the parents refused to release him for adoption. After six days without food and water, Baby Doe starved to death. Cases like this are not isolated; there is good reason to believe that many viable handicapped children are denied treatment at the request of their parents. The Reagan administration has declared this practice a violation of the rights of handicapped people, and is attempting to intervene on behalf of other children like Baby Doe.
Should the government attempt to protect a child in a case like this? The following argument shows that it should: I begin with the claim that retarded children have the same right to life as normal children. It might be argued that profoundly retarded children do not have an equal right, so I stipulate that the claim is about children who will be self-aware, talk, and socially interact. Given this, my next claim is obvious: causing the death of a retarded child by withholding routine medical care violates her civil rights.
My next point is this: allowing parents to be the sole and final arbiters of whether such a child will receive medical care is fundamentally unfair, first because the child has a right to it and second because the interests of the child and the parents may be opposed: they may want the child dead. Now I think it plain that when fundamental civil rights are violated and existing institutions cannot safeguard those rights, it is the duty of government to protect the victims. It follows that the Reagan administration, in interceding on behalf of children like Baby Doe, has done the right thing.
Singer and Kuhse are outraged by what the administration has done. First they attack Reagan’s motives. The Reagan administration “is trying to impose its conservative and religiously motivated moral attitudes on the rest of the community.” They continue “Apparently unable to do anything to stop women from making their own decisions about terminating pregnancy…, Reagan has shown his support for the pro-life groups by interfering with family decisions in that most tragic, personal, and delicate of situations, the birth of a severely handicapped child.” This ad hominem attack is beside the point: Reagan’s motives may be as black as you please and he still may have done the right thing about Baby Doe. It is also implausible. The rationale I outlined above (which Singer and Kuhse never mention) suggests the Reagan administration is motivated by the desire to prevent the wrongful killing of handicapped children. Most important, the implication that government has no business interfering with family decisions concerning the birth of a severely handicapped child is seriously and obviously mistaken.
Children have rights that transcend the family, most notably the right not to be done away with by their parents. A child born blind and with appendicitis is entitled to the protection of the state if her parents try to cause her death by refusing to consent to an appendectomy. Consequently it is the duty of the state to interfere. The (alleged) fact that the parents will care for the child throughout her life (if they allow her to survive) is inadequate ground to leave it to them whether she will live or die (indeed, it would be good reason not to leave it to them). Handicapped children aren’t chattel and parenthood isn’t a license to do away with unwanted children. Singer and Kuhse have come down squarely on the wrong side of a civil rights issue.
The Reagan administration’s response to the infanticide of Baby Doe has been to enforce section 504 of the Rehabilitation Act of 1973, which forbids medical institutions receiving federal funds “to withhold from handicapped citizens, simply because they are handicapped, any benefit or service that would ordinarily be provided to people without handicaps.” Guidelines issued by the administration state that 504 “does not compel medical personnel to attempt to perform impossible or futile acts or therapies.” That is, heroics are not required to prolong the lives of non-viable infants; children born without brains are given as an example. Further, hospitals are encouraged to set up Infant Care Review Committees to discuss problem cases. But the guidelines make it plain that the government will enforce section 504 when a viable handicapped child is being starved to death or denied life-saving treatment because the child is handicapped, when the handicap is unrelated to the problem that is threatening the child; otherwise “the decision-making process customarily undertaken by physicians” is to be preserved.
On the face of it, these guidelines are a good idea. We want to protect the lives of children like Baby Doe without compelling doctors to fight to save the terminally ill. Nor should we interfere with genuinely difficult treatment decisions: a child is born with a dangerous brain tumor but surgery is likely to cause crippling strokes. We need to distinguish difficult treatment decisions and the refusal to prolong dying from out and out infanticide on a plainly viable child. Obviously it is the intent of the guidelines to accomplish precisely this. They take a giant step in the right direction.
Singer and Kuhse are incensed by the guidelines. They maintain the Reagan administration is committed to the idea that “all human life is of equal worth” and this idea is what motivates the guidelines. They argue that “this position cannot be taken seriously.” However this line of criticism is irrelevant when taken as an objection to the guidelines. Even if the principle that allegedly motivated the guidelines is mistaken, it doesn’t follow that the guidelines are mistaken too. Indeed, it is obvious that one can support the guidelines even if one believes that some human lives are more valuable than others; it is only required that one believe that some handicapped children’s lives (e.g., those who will be self-aware) are of equal worth or at least of sufficient worth to deserve protection. Then one must find a policy that protects those who are worth protecting and has minimum impact elsewhere, except where it is necessary to safeguard those we wish to save.
Now the guidelines protect Baby Doe without interfering in genuinely difficult treatment decisions or compelling us to fight to prolong dying. They do compel us to correct a malformed esophagus in a profoundly retarded child whose life some might judge insufficiently valuable to save. But this may be the price of saving Baby Doe. For supposing there are viable handicapped infants who are worth treating and viable handicapped children who are not, there is probably no way to delimit that second class without putting all handicapped infants at risk; perhaps there is a way to do this but it is difficult to see what it would be. Therefore, those who recognize the existence of the first group of infants have good reason to support a uniform policy for all viable handicapped children, even if they believe some aren’t worth treating. Whether or not all lives are of equal worth, the guidelines are a good idea.
Singer and Kuhse describe a case in which an infant without a forebrain was resuscitated twenty times by a doctor allegedly bowing to pressure from “pro-life” groups, and they imply that this is more likely to happen now that section 504 is being enforced. This is unfair: the guidelines do not compel “impossible or futile acts or therapies” or acts which merely prolong the process of dying. The authors describe a case in which a complaint “led to three investigators and a neonatologist examining after midnight, each infant” in a facility, to find nothing wrong. But every law is a nuisance, especially laws that establish the civil rights of a previously ignored minority. Shall we do away with child abuse laws because they lead to the investigation of innocent families? The authors are indignant that the Reagan administration refuses to be bound by the judgments of Infant Care Review Committees, which, one supposes, will be staffed by experts like doctors and bio-ethicists. But Singer and Kuhse are bio-ethicists and the obstetrician whose ignorance about Down’s Syndrome may have doomed Baby Doe is a doctor: obviously handicapped children are entitled to the protection of the law. The authors maintain that most of the support for the guidelines is a response to appeals by groups like the “Christian Action Council.” Expressions like “pro-life” and “Christian” seem to have the same function for Singer and Kuhse that “communist” and “outside agitator” had in the rhetoric of those who opposed the civil rights movement of the 1960s: attacking those who support a policy is a handy way of avoiding the issues. They neglect to mention that the American Coalition of Citizens with Disabilities, the Association for Retarded Citizens, the Association for the Severely Handicapped, the Disability Rights Education and Defense Fund and similar groups support the guidelines too. Nor do they mention that the Executive Director of the American Academy of Pediatricians describes the guidelines as “on balance a major step in the right direction toward insuring that handicapped newborns receive appropriate medical treatment.”
The bottom line for Singer and Kuhse is this; “No one has the right to impose on anyone else the lifetime burden of caring for a severely handicapped child who has no reasonable prospect of a satisfying life.” This is ignorance. Parents of severely handicapped children are assisted by Supplemental Social Security Income, Medicaid, as well as the Handicapped Children Program, and they can release the child for adoption if they don’t want her. Many states reimburse adopting families for the maintenance and medical expenses of a disabled child. Increasingly families adopt precisely those children Singer and Kuhse assume have no chance of a satisfying life, with favorable results. Having adopted one, they often adopt others. Organizations of adoptive parents estimate that with vigorous advocacy and recruitment, almost all severely handicapped children given for adoption would find homes. The “burden of the hopelessly handicapped child” is part of the mythology of ignorance and fear that often underlies the judgment that a child’s life is not worth living. On the day that he starved to death in Indiana, at least twelve families were trying to adopt Baby Doe.
