An Exchange on Baby Doe

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.

Jim Stone

University of New Orleans

New Orleans, Louisiana

To the Editors:

The recent discussion of treatment of babies born with serious defects is surprising in that it totally ignores an important factor. Depriving these children of medical attention will normally lead to their dying. As Singer & Kuhse say, “…in many countries, including Britain and Australia, it is standard practice to allow the more severely afflicted babies to die.” The point that I wish to make, is that in general this is a rather painful death. Surely providing a quick and painless death would be far superior.

There doesn’t seem to be any published explanation for this general use of less “humane” methods. I think, however, that a great many people are making the same mistake that bad King John did. He apparently thought directly killing people was wicked, thus when he had seized one of his enemies he didn’t actually kill him, he just withdrew support. Specifically, the victim was not fed.

King John’s view of morals in this area as in most other areas was seriously defective. It is astonishing, however, that a great many modern writers seem to be making the same mistake. If we agree with Singer and Kuhse and “Abandon the idea that all human life is of equal worth,” we should at least see to it that the most humane possible methods are used in terminating a low value life.

Gordon Tullock

Center for Study of Public Choice

George Mason University

Fairfax, Virginia

To the Editors:

Peter Singer and Helga Kuhse’s “The Future of Baby Doe” correctly summarizes this Administration’s problems with trying to create health policy from legal cases. Yet the argument that decisions concerning defective newborns are fundamentally ethical rather than medical offers no workable alternative to the bureaucracy that oversaw the treatment of Baby Andrew. Institutionalizing Infant Care Review Committees, the one strategy on which the government and the American Academy of Pediatrics agree, calls for more professional input and offers no voice to parents. Far from guaranteeing equitable or humane treatment, the committee solution leaves the definition of infant and family interests to the vicissitudes of group dynamics among doctors, lawyers, ministers, ethicists, and representatives of handicapped groups who bear no consequences for the final decision.

The main point of the Stinsons’ book, that their infant became lost in the interstices of a complex referral system, needs reemphasis. The past ten years have seen a phenomenal growth in neonatal intensive care with expanded options for high technology diagnosis and therapy. The great majority of newborn intensive care patients are premature infants, not those suffering from either Down’s Syndrome or spina bifida. While the issue of surgery (for esophogeal atresia as in the Baby Doe case or for duodenal atresia as in most Down’s Syndrome problem cases or for spina bifida as in the Baby Jane Doe case) lends itself to a yes-no solution, the treatment of premature infants troubles far more practitioners and parents because there are virtually no disincentives to treatment. Singer and Kuhse mention the Pro-life influence and the fear of legal repercussions as one pressure to continue heroic intervention in otherwise hopeless cases. The immediate effect of the Baby Doe regulations has been to increase referrals of borderline cases to Level III units to avoid difficult decisions in the delivery room and lower level nurseries.

Probably more important than external threats, however, are the professional and institutional dynamics that created neonatal intensive care in the first place. Neonatology is a new subspecialty of pediatrics that has as a central goal the improved viability of increasingly smaller premature infants. Some neonatologists recognize no lower birthweight limit in admitting premature infants to the neonatal intensive care unit (NICU). Each year, on the basis of very little and inconclusive research about severe and permanent damage to patients, the birthweight range of routinely treated newborns drops. Prior to 1977, the 1500 gram neonate was the frontier case. Today, the 900 gram newborn is routinely treated and the 600 gram infant is “on the frontier.” Severe cerebral hemorrhages (as suffered by Baby Andrew) are common in these very low birthweight ranges along with gross underdevelopment of all major organs. [If] there are inequities afflicting the treatment of critically ill newborns,…they do not fit a simple model of discrimination. NICU physicians both undertreat and overtreat, depending on how committed they (or the unit director or the pediatric surgeons) are to experimentation, how concerned they are with filling unit beds, how fearful they are of refusing a colleague’s referral, how ignorant they are of long-term prognosis, and how cynical they are about parental attitudes. As the Stinsons found out to their dismay and grief, not ill-will but the sheer numbers of house officers, fellows, attendings, and consulting physicians involved in a long-term case can lead to sequentially irrational decision making and a break-down in communication with parents. The consistency of parents in defending the interests of their critically ill newborns is far superior to the consistency of physicians in approaching worst cases….

Instead of advocating blanket regulations, the Administration would do much better to demand limited and uniform policies allowing categorical refusal of treatment on the basis of medical indicators. As with Lorber’s spina bifida guidelines, the imposition of clinical criteria appears harsh only if the larger perspective on health care is lost. The Baby Doe regulations place so much faith in medical intervention that we can completely forget that the main cause of premature births is poverty. Poor nutrition, poor housing, and poor prenatal care have time and again been strongly associated with prematurity. As a country we invest increasingly in intensive care for newborns (so that the service now ranks with our top medical expenditures, renal dialysis and coronary bypass), while undercutting basic programs in health, nutrition, and family assistance that more directly resolve the problem.

In a recent US Office of Technology Assessment report on the economics of newborn intensive care, no hard evidence could be mustered that NICUs actually affected neonatal and infant mortality rates. Instead, when the general health of the population improves, prematurity rates decline and with them mortality rates for newborns and infants.¹ In addition, a series of clinical evaluations from a national study continue to remind us that very low birthweight infants are readmitted to the hospital at rates five times those for normal newborns.² Even as survivors, experimental cases remain patients….

Jeanne Guillemin

Boston College

Chestnut Hill, Massachusetts

Peter Singer and Helga Kuhse replies:

The treatment of severely handicapped newborns raises a number of important ethical issues. One of the these is the ground and scope of what is commonly referred to as “the right to life”; another is whether there is a significant ethical distinction between allowing a baby to die, and killing a baby. In our review we did not try to cover these more fundamental questions. We have discussed them in a book (now in press) but our review had a more limited aim. We wished to present what happened to Andrew Stinson as an example of the kind of undesirable occurrence which the Reagan administration’s Baby Doe regulations are likely to make more common. We also sought to show that these regulations are based on confused thinking. Professor Stone’s letter perpetuates the confusions in the regulations.

The central point on which we criticize the guidelines is that they refuse to allow hospitals to take any account of the quality of life prospects of the handicapped infant. It is true that, as Stone points out, the guidelines do not require “impossible or futile” treatment. But what is “futile” treatment? If quality of life is not relevant, there is nothing “futile” about the twentieth resuscitation of an infant without a forebrain. The nineteen resuscitations which preceded this one did succeed in prolonging the life of this particular infant for a full eighteen months. Medical treatment which prolongs life for eighteen months is not normally regarded as futile. Why does Stone so regard it in this case? Presumably only because he sees no point in prolonging the life of an infant with no prospect of a worthwhile life. If this is the ground on which he would allow such an infant to die, however, he is making a quality of life judgment. Hence he seems to be at one with us, and in opposition to the guidelines, on the central question of whether it is proper to invoke quality of life considerations when we decide whether to give life-prolonging treatment to handicapped newborn.

Stone is incorrect when he says that the guidelines do not interfere with genuinely difficult treatment decisions. Obviously, if the guidelines mean what they say, they do interfere with, and require the wrong response to, a whole range of cases in which the life of the infant can be prolonged, but the quality of life prospects of the infant are extremely poor.

Although Stone says that the guidelines do not interfere with genuinely difficult treatment decisions, he gives up this claim in his very next sentence, in which he acknowledges that the guidelines do compel us to save the life of a profoundly retarded child whose life some might judge insufficiently valuable to save. He then shifts to a different claim: that this is a price we should pay in order to save the lives of handicapped infants who are not so profoundly retarded. He has in mind, apparently, infants who will eventually become self-aware, and will be able to talk and interact socially.

Should we be prepared to pay this price? To answer this question, we would need to decide whether we really consider it to be of vital importance to save the lives of these infants; and we would also need to consider whether there might not be other ways of saving their lives which did not have so high a price.

All that Stone says about the importance of saving the lives of these less severely handicapped infants is that retarded children—other than the profoundly retarded—have the same right to life as normal children. This is, however, a claim which urgently needs further discussion. What right to life do normal infants have? As we said in our review, the prolife groups are correct when they say that the location of the baby inside or outside the womb cannot make a crucial difference to its moral status. If the majority of members of our society are now prepared to accept that a fetus does not have the same right to life as a self-aware person, perhaps our society also does not believe that a normal newborn infant has the same right to life as an older child or an adult. Certainly many societies have made a sharp distinction between infanticide and murder; the reactions of many parents—and not just parents—in our own society to “Baby Doe” situations suggests that some such feeling exists in our own society as well.

This is too large an issue to settle here. One of us has discussed it elsewhere³ and we deal with it more fully in our forthcoming book. For present purposes, all we can say is that while we do not think that newborn infants are “chattel,” as Stone claims—and do not believe they should be regarded with anything less than humane and loving concern—we also do not think of the moment of birth as somehow instantly bestowing upon the hitherto hapless fetus all the civil rights of a mature person.

The second question raised by Stone’s defense of the regulations is this: if it is a bad thing that mildly retarded children are allowed to die in infancy, is Federal intervention the best method of stopping this? We believe that leaving the decision to those who will care for the infant is a better solution. Parental love is a strong motivating factor. Few parents will take decisions that are not in the best interests of their children. Even in the Baby Doe case, it is not at all clear that the parents’ decision was based on anything but the interests of the child. In a letter published in the Los Angeles Times,⁴ a Californian couple, John and Susan West, described the miserable life of their son Brian, who, like Baby Doe, was a Down’s syndrome child born with a defective esophagus, but unlike Baby Doe, was operated upon. On the basis of their own experience, the Wests considered the decision made by the parents of Baby Doe to have been in the best interests of the child. Since the letter was written, Brian West has died from complications resulting from the medical treatment. From the Wests’ description, it is clear that surgery in these cases does not always succeed in producing a worthwhile life.

The conclusion we would draw is that parents are more likely to be right about these cases than are those whose concerns stem from misguided religious zeal. Stone says that we use terms such as “Christian” and “pro-life” as pejoratives; we intend no such overtones, but we do use them to make the point that support for the Baby Doe guidelines does not come from the community as a whole, or from that section of it which has a particularly strong record of support for civil rights in general. Most of this support comes, rather, from those who hold certain religious doctrines and who wish, under the guise of respect for civil rights, to impose these doctrines on the rest of the community.

In this connection—and since Stone finds implausible our view of the motivation of the Reagan administration—it is worth reporting that on the same day we received Stone’s letter (April 26) the Denver Post carried a story headed: “Administration challenges rights of retarded.” The story reported that the administration had filed a brief with a federal court arguing that the mentally retarded have no federal right to training that would develop their capacities to the fullest extent possible. The brief, filed by the Justice Department’s civil rights division, asked the court to overturn a lower court decision that inmates in a Pennsylvania state hospital have a federal right to rehabilitation in “the least restrictive environment.” Instead, the Reagan administration argued, the mentally retarded have a right only to physical safety in state institutions and to “freedom from unreasonable bodily restraints and to such training as is required to reduce the need for bodily restraints and promote physical safety.” The position taken in this brief reverses the stand taken by the administration in briefs submitted in the same case in 1981.

This despicable action by the Reagan administration makes a mockery of its pretended concern for the rights of the handicapped. It also undercuts Stone’s claim that parents of severely handicapped infants can always give the child up for adoption. While national publicity over a particular case may trigger a few offers of adoption, everyone who has worked in this area knows that for each offer of adoption there are thousands of unpublicized handicapped children languishing in institutions which do not provide adequate care. It says much for the concern of parents that most of them would rather take on the very considerable burden of rearing their severely handicapped child than abandon the child to this kind of existence. It says little for the concern of the Administration that it is willing to fight in court against moves to ensure that these institutions develop the capacities of their residents.

Professor Tullock raises the other central issue we were not able to discuss in our review: whether there is a morally significant distinction between active and passive euthanasia. Since Professor Tullock has brought up this point, however, we readily assent to the view that once parents and doctors have decided on a course which is intended to bring about the early death of a severely handicapped infant, it would be better if that death could be achieved as swiftly and humanely as possible. We deplore the unnecessary suffering which results from the present ambiguous legal situation.

We welcome Professor Guillemin’s comments, and entirely agree that Infant Care Review Committees are not an adequate answer to this problem. We also agree that there is a need for a reevaluation of the role of neonatal intensive care units; in fact, through the Centre for Human Bioethics at Monash University, we are carrying out an investigation into issues raised by the care of premature infants in Australia. These issues are, if anything, even more complex than those involving severely handicapped infants.