Poor Dr. Koop. Having argued that the regulations were needed because a very large proportion of pediatricians were ready to go along with the wishes of parents and not operate on a Down’s syndrome infant—precisely the result the regulation had been devised to prevent—he was in an impossible situation in trying to maintain that all the regulation demanded was “customary medical care.”
The Department of Health and Human Services soon had a second chance to explain its stance on the type of case we have been considering. Judge Gerhard Gesell found in favor of the Academy of Pediatrics and its coplaintiffs on the grounds that the department had, by issuing the regulation without allowing a period for public comment, failed to comply with the requirements of the Administrative Procedure Act, an act designed to curb bureaucratic actions taken without consultation and notice to those affected. The department therefore issued, on July 5, 1983, a new “Proposed Rule.” The new rule was essentially similar to the ill-fated Interim Final Rule, but it was issued with considerably more information on the circumstances in which it was to apply. In particular, it was stated that:
Section 504 does not compel medical personnel to attempt to perform impossible or futile acts or therapies. Thus, Section 504 does not require the imposition of futile therapies which merely temporarily prolong the process of dying of an infant born terminally will [sic], such as a child born with anencephaly or intra-cranial bleeding. Such medical decisions, by medical personnel and parents, concerning whether to treat, and if so, what form the treatment should take, are outside the scope of Section 504. The Department recognizes that reasonable medical judgments can differ when evaluating these difficult, individual cases.
Here the department takes the commonsense view that it is not obligatory to keep alive infants with anencephaly or intracranial bleeding. It is interesting to see how the department tries to take this view without basing it on the fact that infants with these conditions have no prospect of a reasonable quality of life. What the department suggests is that in these cases treatment is “futile” and will “merely temporarily prolong the process of dying” of an infant born terminally ill. Whether a treatment is futile in this way is, the department states, a “medical decision” and “reasonable medical judgments can differ” in these cases. The department seems to be saying that it does not wish to interfere in these “medical decisions.” Since this remains the position of the department in the final version of its rule, published on January 9, 1984, its approach requires close scrutiny.
The department’s position cannot be maintained. As we have seen, sophisticated modern medical techniques could indefinitely prolong the lives of children with anencephaly or intracranial bleeding. The judgment that someone whose life could be indefinitely prolonged by available medical means is “terminally ill” and therefore should not have his or her life prolonged is not a medical judgment; it is an ethical judgment about the desirability of prolonging that particular life.
Could the department defend its view by saying that whether a patient is dying is a medical judgment, based on the fact that the patient can survive only with the help of medical treatment? Such a test would be far too broad. By this standard, a patient suffering from diabetes would be “terminally ill” and it would not be required to provide “futile” insulin therapy. The fact that no one in his or her right mind would regard insulin therapy for a diabetic as “futile” should make us realize that judgments about the futility of treatment are not purely medical judgments based on the prospect of the underlying condition being cured. At present we cannot cure diabetes, any more than we can cure anencephaly, or intracranial bleeding, or the absence of an intestine. In all these conditions, the patient will remain, for his or her entire life, dependent for survival on continuing medical treatment. The difference between diabetes and the other three conditions is, of course, that the diabetic will be able to enjoy a near-normal life, while no matter how much we prolong the life of the infant with severe intracranial bleeding, for instance, the infant’s life will always remain devoid of everything that we regard as making life worthwhile.
As we read on through the “supplementary information” issued by the Department of Health and Human Services it becomes still more clear that, despite protestations to the contrary, the department’s position is based on thinly veiled judgments that some lives are not worth living. The department’s statement continues:
Section 504 simply preserves the decision-making process customarily undertaken by physicians in any treatment decision: will the treatment be medically beneficial to the patient and are those benefits out-weighed by any medical risk associated with the treatment? It is only when non-medical considerations, such as subjective judgments that an unrelated handicap makes a person’s life not worth living, are interjected in the decision-making process that the Section 504 concerns arise.
In issuing the January 9 “Final Rule,” the department indicated that so far as the provision of all “medically beneficial treatment” is concerned, “the Department’s position remains unchanged.” The problem with this unchanged position is that we need to decide what treatments are “medically beneficial to the patient.” The simple answer, and the only answer that is consistent with the idea that all human life is of equal worth, is that all treatments which prolong life are beneficial. Yet this is clearly not the answer the department would give: it does not regard it as beneficial to prolong the lives of infants born with virtually no brain, or who have suffered severe intracranial bleeding. Why is this not “medically beneficial to the patient” in the same way that giving insulin is medically beneficial to the diabetic?
Once again, the answer must be that it is not medically beneficial to prolong the lives of infants who will never experience anything, and will remain alive but in a state without feelings or awareness, unable to enjoy their lives in any way. Plainly, the prolongation of such a life is not “medically beneficial” because it is not beneficial in any sense. Karen Ann Quinlan, the New Jersey woman who has been in an irreversible coma since 1975, has not benefited from the fact that her life has been prolonged for many years. She has not been aware of the extra years of life she has had, and thus has had no benefit from them.
Similarly, prolonging the life of an infant without a brain does the infant no good because it is not possible for the infant to benefit from the additional period of life. This is not, however, a medical judgment. It is, quite obviously, a “non-medical consideration” based on the judgment that the handicap—in this case, the virtual absence of a brain—“makes a person’s life not worth living.” The department seems to think that such judgments are “subjective” and must not be “interjected in the decision-making process”; yet its own position is based on just this type of judgment.
Admittedly, the department does refer to judgments about “an unrelated handicap,” and in criticizing its position we have not taken account of the stipulation that the judgment be about a handicap that is “unrelated.” But it is difficult to see exactly what this means or how it can make a difference. Presumably it is supposed to be wrong to take account of a handicap unrelated to the treatment needed to keep the infant alive; but how do we define what the handicap is? This may seem clear enough in a case like that of Baby Doe, where Down’s syndrome is the reason for not operating on the blockage in the digestive system. But what about the case of, say, an intracranial bleeding? The treatment needed to keep the infant alive might be artificial respiration. A baby who was having breathing problems, but was otherwise normal, would certainly be put on a respirator; the baby who, as Dr. Parrott put it, “never will have the capacity for cognitive behavior” would not be put on a respirator.
But if the lack of any “capacity for cognitive behavior” is a factor in the decision to put the baby on the respirator, this would have to be a “subjective judgment that an unrelated handicap makes a person’s life not worth living.” As such, it should give rise to what the department calls “Section 504 concerns.” Yet apparently the department does not think it does. On the other hand, the department presumably would think that “Section 504 concerns” arise even in some cases where the decision not to sustain life is made because of a handicap that is directly related to the form of treatment—for instance, if a doctor did not give insulin to a diabetic patient because in the doctor’s judgment diabetes is a handicap that makes life not worth living. Thus, whether the life-sustaining treatment is or is not related to the patient’s handicap cannot be, even in the department’s view, a crucial factor in whether a decision not to prolong life is a case of discriminating against the handicap.
The Department of Health and Human Services received 16,739 comments on the proposed rule it issued on July 5, 1983. Ninety-seven percent were in support of the rule, many written in virtually identical terms as a response to appeals by groups like the “Christian Action Council.” One hundred and forty-one pediatricians or newborn care specialists sent in comments: of these, 72 percent opposed the rule. The American Academy of Pediatrics has also made a lengthy submission, which includes documentation of the harm done to hospitals trying to cope with medical and human crises by sudden descents of the “Baby Doe Squad.” For instance, at Vanderbilt University Hospital, a “hotline” call led to three investigators and a neonatologist examining, after midnight, each infant in the facility, and diverting the hard-pressed hospital staff from patient care for a total of fifty-four staff-hours. The neonatologist described the hospital’s care as “exemplary.” More dramatic still is a comment quoted from a New Mexico pediatrician:
Because of the fear I had in being “reported,” I recently spent one agonizing hour trying to resuscitate a newborn who had no larynx, and many other congenital anomalies. The sad part was that both the parents in the delivery room watched this most difficult ordeal. It was obvious to me that this was in no way a viable child but I felt compelled to carry on this way out of fear someone in the hospital would “turn me in.” I am sure that you who sit in Washington are not faced with such difficult decisions at two o’clock AM.
This comment becomes especially ominous in the light of the Stinsons’ experience. Not for one hour but for nearly six months they had to stand by while doctors kept their tiny, suffering infant alive. (At one point a doctor told them that Andrew must “hurt like hell” every time he breathed.)