December 1990 XII/4
INFORMED CONSENT IN THE NEONATAL CARE UNIT
Shella Clifford weighed 1000 grams when she was born prematurely last summer. Because of her precarious hold on life, she was flown ninety miles to a hospital with a neonatal intensive care unit (NICU) where more thorough and advanced medical therapy was available. Anyone observing the clinical activity upon Sheila's arrival at the NICU would be impressed with the care and concern of the medical team for Shella. Equally impressive was the care offered by pastoral care personnel and social workers when her parents arrived at the hospital. A sincere effort was made to consider their spiritual and temporal concerns arising from Shelia's condition. However, not much time was spent conferring with the parents about medical management plans. Life saving procedures were explained, but permission to initiate and continue these procedures was seldom requested. If the definitions of informed consent formulated by some contemporary ethicists were accepted as the norm, the conclusion could be drawn that in neonatal care units the rights or parents are sometimes violated. According to these ethicists health care professionals are responsible only to carry out the "autonomous" directives of patients or their proxies. If there would be any disagreement, the directives of the parents should prevail. This essay will consider the issue of caring for infants in the NICU, seeking to explain why the medical team on occasion assumes more responsibility for decision making than do medical teams caring for patients in other settings.
In order to understand the ethical responsibilities of any profession, one must have a clear understanding of the objectives of the profession. Only after understanding the objectives of the profession may one proceed to state the ethical norms for the profession. Through fulfilling the ethical norms of a profession, one not only serves the client or patient in need of help from the professional. One also fulfills oneself as a person and develops the skills and virtues proper to the profession.
What are the objectives of the medical personnel of a neonatal care team? Certainly, they provide health care for infants and children at the request of the parents. But they also care for infants as agents of the community or society. Society needs healthy children. Society strives to foster the well-being of children, especially the weaker ones, When infants are born in a debilitated condition, not only their parents but society at large has an interest in assuring that the ailing infants will become as strong and as healthy as possible. In a very real sense, neonatologlsts and pediatricians are the delegates of society. They have a direct responsibility to the child that does not stem entirely from the parents. The philosophy behind this delegation and the desire for children to be strong and healthy is not based upon a perverted notion that the child exists for the society. Rather, the delegation results from the assumption that society exists far the individual. Hence, society should support facilities and professions which promote the well-being of individuals, especially the well-being of children.
Maintaining that medical personnel caring for infants and children receive a mandate from society as well as from the parents, does not preempt the responsibilities of parents. Parents are also advocates for their children. But this mandate does indicate that decision making concerning medical therapy for infants and children is a collaborative process. The unifying theme of this collaboration is that both parents and medical team have an ethical responsibility to strive for the overall well-being of the infant or child.
Granted the fact that medical personnel, as well as the parents, are advocates for children, what implications follow?
1. Both medical personnel and parents should be concerned with the overall well-being of the child; not only with the possibility of keeping the child alive. Overall well-being is very difficult to judge, especially for infants, but it involves more than mere physiological function. In addition to the function of the infant, medical personnel consider social and economic factors as they assess well being. There are some cases, especially if severe neurological deprivation is evident, when continuing life support clearly does not result in overall benefit for the infant. On the other hand, simply because an infant is physically or mentally impaired does not justify withholding life support. In particular cases, medical personnel in collaboration with parents, must make the difficult decision concerning application, continuation or withdrawal of life support. The traditional ethical norms for withholding or withdrawing life support should be utilized; namely, 1) does this therapy impose more burden than benefit upon the patient or; 2) will this therapy be effective or ineffective insofar as the overall well-being of the patient is concerned.
Applying these ethical norms to infants is much more difficult than to other persons. The prognosis for infants is always tinged with uncertainty. Every neonatal care professional can cite a case when an infant survived contrary to professional expectations. Moreover, when judging the future well-being of a disabled infant, we must not underestimate the value of human life. Adults born with genetic or acquired anomalies are vociferous in appealing for life support for debilitated infants. In making these difficult ethical decisions, it seems that medical personnel caring for infants and children many times have a greater responsibility toward their patients than do medical personnel caring for older patients.
2. States and cities should give high priority to the health and well-being of their children. Realizing that society has a special interest in the health of children, logically leads to the question: is enough attention and funding devoted by society to the health needs of children? Based upon every survey and study available, the answer is no. Society fulfills its responsibility to some extent in regard to acute care. But primary preventative services, follow-up rehabilitation and chronic care services are lacking.
3. In our pragmatic society the notion of protecting and enhancing the life of weak and debilitated infants might become unpopular. In the near future prolonging the life of impaired infants will be considered by some to be wasteful and ridiculous. There is a growing tendency, because of the ability to detect genetic anomalies and other pathologies before birth, to recommend the abortion of less than perfect infants. But ethically responsible health care professionals march to the beat of a different drummer. As Karl Barth, the noted Protestant theologian stated:
"No society whether family, village or state, is really strong if it will not carry its weak and even its weakest members. They belong to it no less than the strong, and the quiet work of their maintenance and care which might seem useless on a superficial level, is perhaps more effective than labor, culture, or productivity in knitting it closely and securely together. On the other hand, a community which regards and treats its weak members as a hindrance or even proceeds to their extermination is on the verge of collapse."
Sheila survived and is thriving today. Far from signifying a violation of parents rights to informed consent, prompt and aggressive medical care given to Sheila Clifford indicated a collaborative approach to her overall well-being. This approach is based upon the love parents have for their children, but also upon the responsibility of health care professionals to foster the future well-being of society.
Kevin O'Rourke, OP
| INDEX |© Kevin O'Rourke, O.P.