I am head nurse in a Catholic hospital’s pediatric unit. A recent case is still troubling both me and other nurses involved, including my superior, the chief of the hospital’s nursing service. We wonder whether we should have gone to the bishop about it. It is too late now for that baby, but we probably will have similar cases in the future.
When baby Agnes was born, it was obvious that she had serious congenital defects. Still, everyone went all out for her until the diagnosis was confirmed—a genetic disorder, one far more severe than Down’s syndrome, and usually fatal within a year. When the diagnosis was confirmed, Agnes was on a respirator. When the pediatrician told her father about the diagnosis, he at once demanded that the respirator be removed. The hospital administrator called a staff meeting for the next morning to decide how to proceed. In preparing, I talked with my superior and every nurse in my unit, and all of us felt we should continue to care for Agnes, who was not dying, even though she had many problems and a poor prognosis.
At the meeting, the pediatrician produced a statement signed by both parents directing that the respirator be removed. He also said the patient’s respiratory deficiency was so severe that she would not long survive removal of the respirator; still, he favored removing it, because he felt the baby had no prospect of meaningful life. A staff psychiatrist, who had interviewed the parents, said the father rejected the child as abnormal, and the mother, while showing some ambivalence, agreed that the respirator should be removed. He judged that the family would experience severe stress if the baby eventually were brought home, so that it would be best if death came about quickly by removing the respirator. At the same time, he made it clear that, for the mother’s sake, everyone who talked with the parents should stress that the baby’s underlying problems were the cause of her death.
The administrator had consulted the hospital’s lawyers, who advised complying with the parents’ desires. They said no legal liability would be incurred by doing so, while continuing care against their wishes might lead to trouble unless the hospital obtained a court order. The hospital administrator and the pediatrician shared concerns about the likelihood that prolonged care for the baby would involve substantial costs that probably would never be recovered, since the family is not wealthy and has limited insurance coverage. I, of course, stated my own view and reported that my superior and all the nurses in the unit agreed with me. The administrator said he understood how I and the other nurses felt, and the psychiatrist commented that we naturally had motherly feelings toward the baby. But the administrator and the pediatrician agreed with each other that, all things considered, the practical course was to remove the respirator.
At the end of the meeting, the pediatrician went directly to the nursery and removed it. Then he went out for coffee, Agnes stopped breathing, and he returned and pronounced her dead.
My superior and I were not only sad but angry. We began wondering what we could have done. We do not think it would have done any good to go to the public authorities, since a nearby university hospital has been very open about selecting defective newborns for nontreatment, and the authorities have done nothing about it. But the bishop has shown an interest in the hospital and insisted that no sterilizations be done here. That makes us think we could have appealed to him.
This question concerns the duty to report wrongdoing within an organization to a competent authority. The decision to remove Agnes’s respirator was based on unsound reasoning. Still, though Agnes was denied procedural justice, removing the respirator may not have been wrong. The judgment should have been made by considering both the benefits and the burdens to her and to others of carrying out alternative plans of care. The administrator’s unfair handling of the case shows that he is either ignorant of relevant Catholic teaching or uncommitted to following it. Without waiting for another case to arise, the questioner and her superior should call this case to the bishop’s attention and ask him to take appropriate preventative measures.
In my judgment, the basis on which Agnes’s respirator was removed was morally unacceptable. The decision was carried out so quickly, however, that you probably did not have enough time to reach the bishop and get him to intervene. In any case, you did your best at the time and should not blame yourself for not doing more.
Even if there were no reason to expect another similar case in the future, what happened in this case calls for guidance by the bishop, since it not only manifests a few persons’ ethical insensitivity and confusion but surely has weakened some others’ moral stance. But no doubt you are right that there will be more such cases, and if the hospital administrator proceeds in the same way, similarly questionable decisions are likely to be made and quickly executed. Moreover, you and others who opposed what was done may not have an opportunity to take action in the next case. So, I do not think you and your superior should wait until another case arises before appealing to the bishop. Instead, I suggest you report to him precisely what happened so that he can take appropriate preventative measures. The following reflections may help you clarify your thoughts as you prepare to communicate with him. Or, if you wish, you may pass them on to him to help him in evaluating the situation.
The decision to remove Agnes’s respirator must be criticized apart from considering what should have been done. For, though it might have been right to remove the respirator on other grounds, in this instance the decision was vitiated by the reasoning on which it was based. First I shall criticize that reasoning, then discuss how the case should have been handled.
The pediatrician quickly decided that his patient did not deserve prolonged care. His reason for wishing to remove the respirator may well have been homicidal. His argument—Agnes “had no prospect of meaningful life”—presupposes that human life itself is not a fundamental good of the person but only a necessary condition for some other human good or goods. That presupposition is false, since a human person is an organism whose life, being his or her concrete reality, is intrinsically good.262 Moreover, since one cannot judge to be meaningless the lives of people afflicted with handicaps, such as severe genetic disorders, without applying a nonrational standard of adequate quality of life, the pediatrician’s argument depended on a nonrational standard; and so it involved unjust discrimination against this severely handicapped baby. The pediatrician’s main concern seems to have been to obtain the mother’s authorization and the hospital’s agreement to do as he wished. Perhaps he communicated his discriminatory attitude to Agnes’s father or at least confirmed the father’s inclination to evade paternal responsibility. The father ”rejected the child as abnormal," according to the psychiatrist’s report, as if only normal babies were entitled to acceptance and care by their parents.
The psychiatrist altogether ignored Agnes’s personal good and rights, and his argument turned solely on the psychological stress he thought her parents would suffer if she were brought home. That argument assumed not only that the psychological stress would be a very serious evil but that it could not be borne or appropriately dealt with except by ensuring that Agnes would never be taken home. To that end, the psychiatrist judged “that it would be best if death came about quickly by removing the respirator.” That reasoning was homicidal, for according to it the respirator was to be removed in order to bring about the child’s death, which, in turn, was to be a means of forestalling the parental distress of having the child at home. The psychiatrist apparently was more or less conscious that removing the respirator would be, morally speaking, the chosen method of murdering Agnes, for he urged everyone to cooperate in distracting her mother from that fact by stressing Agnes’s underlying problems as the physiological cause of her death. Moreover, the psychiatrist apparently was very considerate of the father’s rejection of Agnes but paid little heed to the mother’s ambivalence, perhaps assuming that any sensitivity on the mother’s part deserved no respect. Then too, rather than acknowledge that the nurses’ “motherly feelings” might be a sound response to Agnes’s human dignity and right to care, the psychiatrist referred to them only in making a sophistic excuse for brushing aside the nurses’ reasons to continue caring for Agnes.
Though the hospital administrator’s primary concern should be the well-being of patients and his primary duty is to hold physicians and others to technically and morally sound standards of practice, he apparently was mainly interested in limiting costs and supporting the pediatrician’s decision. Accepted at face value, the parents’ signed statement directing that the respirator be removed and the advice of the hospital’s lawyers that a court order would be needed to continue treatment indicated a possible limit on the hospital’s capacity to care for Agnes. But that possible limit should not have entered into the hospital administrator’s deliberation until he first decided on morally acceptable grounds whether to try to keep Agnes on the respirator. If he had concluded that this small and severely handicapped patient could not rightly be deprived of the respirator, at least at that time, he should have sought the necessary court order.
The unanimous judgment of the nurses in your unit that you should do no less than you had been doing in caring for Agnes was sound insofar as it rejected homicidal intentions and unjust discrimination against her. The confirmation of the diagnosis of a severe genetic disorder did not of itself warrant any reduction in care. Still, Agnes’s poor prognosis could not be ignored in judging what sort of care to give her.
In sum, Agnes at least was denied the procedural justice—fair consideration of her case—to which every person is entitled. The grounds for the pediatrician’s and hospital administrator’s decision to remove the respirator were unsound. Nevertheless, the fact that Agnes was not dying did not of itself require that she be kept on it. So, the question remains: Should Agnes have been kept on the respirator? Or could she rightly have been deprived of it, even though her death was foreseen?
Your account does not include sufficient information to answer that question. The Church’s teaching indicates what would have been the only morally acceptable way to answer it: to judge what would have been fair both to Agnes and to others by considering the benefits and burdens to her and others that probably would have been involved in carrying out alternative plans of care.263
Keeping Agnes on the respirator and using other technical means to deal with her problems would have kept her alive, and sustaining her life would have been a benefit to her, one that deserved consideration despite her handicap and poor prognosis. Caring for Agnes also would have provided some personal and professional fulfillment to you and the other nurses who wished to do so.
The means used to preserve Agnes’s life, however, might well have been burdensome to her. And the provision of an adequate level of care also would have imposed considerable burdens on others, including the costs discussed by Agnes’s pediatrician and the hospital administrator. Yet they apparently were concerned about the costs only because they did not expect them to be covered by insurance and so feared the bills would never be paid. From a less selfish viewpoint, the costs of care ought to be considered even if they will be covered by private insurance or a public program, for even then some people must bear the costs, and their capacity to bear them not only is absolutely limited by their resources but morally limited by other responsibilities.
Considering the case this way, I think more information about Agnes’s prognosis was needed to decide how aggressively to care for her. On the one hand, the psychiatrist’s concern about the stress the family would experience if the child eventually were brought home might suggest that there was some prospect of her condition stabilizing so that she could leave the hospital. In that case, the costs of her care might not have been so great as to impose unfair burdens on others, and, with the care parents typically can provide, she could have enjoyed an abbreviated life as an infant member of a family, if not with her parents, then perhaps in a foster home. On the other hand, Agnes’s poor prognosis perhaps indicates that she never could have lived without the respirator and other, increasingly complex life support measures, so that the costs of her care would have imposed far greater burdens, while she would have remained in the hospital and experienced only a patient’s life. The limited burdens and considerable benefits of the former prospect might well have warranted keeping Agnes on the respirator, while the far greater burdens and more limited benefits of the latter might well have justified removing it. But even if, as is likely, the actual prognosis was more complex and less clear than either of the alternatives I have sketched out, a sound consideration of the prospective burdens and benefits for Agnes and others would have been necessary to apply the Golden Rule and reach a just decision, whether to keep her on the respirator or to remove it.
The hospital administrator’s unfair handling of this case shows that he either is ignorant of relevant Catholic teaching or uncommitted to following it. The way this decision was made is unlikely to be an isolated instance of ethical malpractice; similar bad decisions probably are being made throughout the hospital. Therefore, you should report to the bishop not only on this case but on anything else you have observed at odds with the hospital’s claim to be Catholic, and urge him to provide sound instruction and guidance not only to the administrator but to the hospital’s lawyers and other personnel, especially those who participate in life-and-death decisions.
If the administrator is responsive, he should be ready to make whatever changes are necessary—including changes in procedures and in the hospital’s staff, legal counsel, and employees—to maintain its Catholic character. If he proves unresponsive, the bishop might be able to get the hospital’s board or sponsoring religious congregation to replace him with someone who understands relevant Catholic moral teaching and is committed to putting it into practice, so that the hospital will be able to offer its services as an authentic Catholic health care apostolate.
If the administrator is unresponsive and it is impossible to get him replaced, the hospital should not be permitted to betray its mission of health care as an apostolate, defraud potential donors, and mislead its personnel and the public by misrepresenting itself as Catholic when it no longer is. As John Paul II teaches with respect to Catholic institutions, including those concerned with health care: “Bishops are never relieved of their own personal obligations. It falls to them, in communion with the Holy See, both to grant the title ‘Catholic’ to Church-related . . . health-care facilities and counselling services, and, in cases of a serious failure to live up to that title, to take it away.”264
262. See John Paul II, Evangelium vitae, 34, 68; AAS 87 (1995) 438–40 and 480, OR, 5 Apr. 1995, vii and xiii; LCL, 460–67; see qq. 43 and 45, above.
263. Congregation for the Doctrine of the Faith, Declaration on Euthanasia, AAS 72 (1980) 550, Flannery, 2:515: “It will be possible to make a correct judgment as to the means by studying the type of treatment to be used, its degree of complexity or risk, its cost and the possibilities of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources.”
264. John Paul II, Veritatis splendor, 116, AAS 85 (1993) 1224, OR, 6 Oct. 1993, xviii.