May 1982 III/9
THE INFANT DOE CASE
Recently, in Indiana, a newborn infant boy with Down's Syndrome and esophageal atresia died because care was withheld. Doctors advising the parents said they could perform surgery to correct the digestive defect or do nothing. The parents chose to withhold all food and drink from the baby after his birth, thus assuring that the baby would die. The hospital asked for a legal ruling and two Bloomington judges upheld the parents' right to withhold care and surgical treatment. The county prosecutor became interested in the case asking the Supreme Court to override the judges' decision. The Indiana Supreme Court refused, by a 3-1 vote, thus supporting the parents' right to withhold treatment.
Briefly, those are the facts of the "Infant Doe Case." In response to the decisions of the physicians, the parents, and the judges, there was a sustained cry of outrage as well as an equally vociferous defense of the action. Personally, I think it is a good sign when people are interested enough to get excited. And I think we should get excited about life and death decisions; otherwise, where is our compassion and mercy? But "getting excited" is not a sufficient response to a serious ethical issue. Unless our emotional response is founded upon ethical principles, it is liable to do more harm than good. In this essay, then, I would like to consider the Infant Doe Case from ethical perspective. Before doing so, however, I shall point out some of the misrepresentations from press and public resulting from emotional response: (1) the impression was given that every infant, no matter what the medical difficulties, should be kept alive as long as possible; (2) the lawyer sought to justify the parents' ethical decision by saying "it was a difficult case;" (3) withholding food and water was described as "letting nature take its course;" (4) the terms "ordinary means" and "extraordinary means" were used constantly and confusedly with no understanding of their meanings; (5) lawyers and editorial writers were informing us "authoritatively" about medical decisions.
The ethics of medicine mandate that life should be prolonged as long as the person whose life is in the balance can strive for the purpose of life. The assumption of medicine, not unlike the assumption in religious thought, is that life is good and should be prolonged so that people may enjoy life and fulfill its meaning. If disease or illness seem to threaten life, the question may be asked: Should life be prolonged? The response to this question would be yes, unless it is found that one will not be able to strive for the purpose of life if life is prolonged. We find the possibility of one's striving for the purpose of life by asking two questions; if either question is answered in the affirmative, then it is permissible to allow the person to die because striving for the purpose of life is no longer possible. The first question is: Will the therapy be useless? The second question is: Will prolonging life cause a grave burden for the person whose life is threatened (i.e., make it very difficult for the person to strive for the goal of life)? Because of our respect for persons and their right to life, the decision whether to prolong life or allow to die should be made by the person whose life is endangered. Should this person be unable to make the decision, then the family becomes involved, and their proxy decision is respected unless it seems detrimental to the best interests of the patient. In this latter case, the court may be asked to intervene. In all situations, the physician offers advice and counsel, but he does not have the right to make the final decision (cf. Critical Care, State of the Art, III, 1982, R. for more detailed study).
Let us apply this reasoning to the case of Infant Doe.
1. Would surgery for esophageal atresia be useless? For surgery to be useless, it means that it will not prolong life for any significant length of time in regard to achieving the purpose of life. Could Infant Doe's life have been prolonged for a significant time if the surgery for esophageal atresia were performed? We cannot answer that question accurately because we do not have the necessary medical information. I have tried to obtain this information but the records of the case have been sealed by order of the Supreme Court of Indiana. If esophageal artesia were the only life-threatening cause, then surgery should have been performed because all indications are that this surgery usually prolongs life for a significant time. However, there often is serious heart condition associated with children who have Down's Syndrome and esophageal atresia. If this heart condition were serious and not able to be cured through surgery, then the answer to the question, Would surgery be useless?, might be yes. Though we cannot answer this question adequately because of the lack of information, we can say that if the only birth anomaly were esophageal atresia, then it seems surgery should have been performed. A good norm in such cases is: Surgery should not be withheld simply because the person has Down's Syndrome.
2. Could living with Down's Syndrome be considered a grave burden insofar as attaining the purpose of life is concerned? Having observed people with Down's Syndrome, it seems that they are capable of loving relationships and other actions which we associate with the purpose of life. Hence, it would be very difficult to maintain that the malady of Down's Syndrome is in itself a grave burden. Perhaps rearing a child with Down's Syndrome would be a grave burden for some parents, but the proxy decision must be directed toward the benefit of the patient, not the benefit of the family or society. Depending upon the extent of the burden, society should help the family rear children. Thus, life for Infant Doe could not be considered a grave burden.
3. To complete this brief analysis, two more thoughts should be expressed: (a) in ethics, the term "ordinary means" implies that some medicine or therapy is necessary; that is, it would be unethical or immoral to withhold it. The term "extraordinary means" implies that the same medicine or therapy is optional; it may be used, but need not be. Determining whether some particular means to prolong life is necessary or optional occurs after the determination to prolong life or to allow to die. When prolonging life is the ethical responsibility, then the means to that end are called "ordinary" (e.g., a respirator); when a person will be allowed to die, the same identical means is declared "extraordinary;" (b) because medicine is concerned with caring as well as curing, water and other things which comforts a dying person must be offered. Thus, even if medical reasons have indicated that treatment of Infant Doe was useless, he should have been given water through intravenous feeding and other therapy which would have relieved pain.
Questions concerning the treatment of dying people will confront us dramatically in the coming years. We need to strive for ethical consensus or the issue will divide our society. Fortunately, we do have a forum for developing consensus in the President's Commission for the Study of Ethical Problems in Medicine. This commission has done some worthwhile studies to date and is presently considering the question of allowing persons to die. Whatever the results of this study, let us when confronting serious ethical issues, seek to analyze ethically before allowing our emotions to dictate our response.
Kevin O'Rourke, OP
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