Ethical Dimensions in the Care of Severely Handicapped Children: 1986 Presidential Guest Address

DENNIS J. DOHERTY, PHD*Milwaukee, Wisconsin

One of the tasks of ethics is to value-judge human activity. The judgments made look to a given course of action-whether something should be begun, discontinued or modified; whether, from a moral standpoint, something should be permitted, prescribed or prohibited. Not surprisingly, insights differ in these regards and, hence, reasonable people see things differently. All are concerned with the same human values. The problem is that when values compete with one another, moral dilemmas exist.

Everyday experience witnesses to this competition. is a special treasure trove of competing values-whether, for example, to respect a patient's autonomy (personal dignity) or to code a patient against his or her wishes; whether to allocate scarce resources on a first-come first-served basis or according to some social worth criteria (an incarcerated murder who would be helped by a bone marrow transplant, for example, vs. a family man who is a productive member of society); whether to allow a severely damaged infant to die or to treat the child aggressively, a child whose whole effort may be one of mere survival.

The resolution of such dilemmas is ordinarily one of moral certainty. This means that all doubt is not removed but, on balance, there is enough certainty to act on. This is why, for example, a DNR order can be a reasonable (ethical, prudent) approach. That is, someone might urge the possibility of a miracle cure. But while such a cure is possible, the possibility is so remote that a decision not to code a given patient is an acceptable treatment modality. The possibility of such a cure makes it impossible to remove all doubt, but any doubt in that regard is seen to be insignificant from a moral standpoint. Indeed, to act as though a miracle were probable would mean always to treat aggressively, just in case. It should be self-evident that the consequences of such an approach would be disastrously dehumanizing to both patient and practitioner. Hence, moral certainty is akin to medical certainty (as when physicians say "in our best judgment") and can be compared, in a legal forum, to "beyond reasonable doubt" (in criminal matters). Reasonable people can disagree on what is reasonable-and, in consequence, on treatment approaches.

To suggest the possibility of miraculous recovery (remission of a disease, coming out of a "permanent" coma, the serendipitous discovery of a wonder drug, divine intervention) has a touch of the dramatic about it. Ordinarily, however, medico-moral judgments are more attended by difficulty than by drama.

The plight of severely handicapped children poses special problems. There is a multiplicity of medical and other variables which must be factored in if a reasonably accurate moral judgment is to be made; among others: the age (competence) of the child; the severity of the handicap; the treatment modalities that are available (and, for given families, affordable) including the actual circumstances in which a child will be cared for (at home, in an institution where care is at best custodial); parental preferences (recall the celebrated causes of Baby Doe and Baby Jane Doe); and legal ramifications. Often enough, perhaps, the most difficult aspect to determine is the severity of the handicap.

It is easy enough to distinguish physical limitations (with which the Association of Children's Prosthetic-Orthotic Clinics is concerned) from mental handicaps and these from a situation which combines the two. Moreover, it is relatively easy to differentiate between physical handicaps which are stable and those which get progressively worse. And among those which are stable some are obviously minor, others major; clubfoot is not the same as phocomelia. In addition, some children who have physical problems-which, comparatively speaking, are minor-are able to cope quite well; adjustment for others is a matter of considerable hardship.

Since our appreciation today is that a patient should participate as fully as possible in the managment of his or her own treatment, the question of competence is of special concern to the ethicist. Under our law, with which ethical teaching concurs, incompetent persons have the same rights as competent persons. In the case of one who is incompetent (by reason of age or condition, an infant is incompetent by reason of both), an appropriate other can speak in the incompetent person's best interest. Sometimes a youngster who is statutorily under age, for example, a 14-year-old, can comprehend treatment possibilities adequately and can consent or refuse. At times this might occasion disagreement with the parents' preferences. And, in the case of life-saving therapy, courts have intervened to mandate such treatment even against the wishes of the parents who may be religiously motivated. Ethically speaking, competence means the ability to make an informed choice and this requires the ability to know and understand options. The wisdom of the choice made may be debatable to a therapist or parent who evaluates things differently, but if the person is competent, then a competently made request or refusal is usually to be honored.

If it is difficult to define severity of handicap, it is not always easy to determine what is meant by success of treatment. Reconstructive surgery may restore some semblance of a lovely countenance to someone who has been burned or brutally slashed, but if the victim is a female model it is not likely that she can return to her profession. Technically, the surgery is successful, but there is also the human dimension. More pointedly, perhaps, an individual who has myasthenia gravis might by helped by either medical or surgical intervention and, if the person can now return to a job as a computer operator, the treatment can be regarded as successful. If that person was formerly a crane operator or a ballet dancer and must now seek other employment then, by the definition of some, the treatment has been successful-but, in the understanding of others, somewhat less than successful. In other words, of concern to the ethicist are what medicine hopes to achieve and the criteria by which that achievement is to be judged.

This brings us to a consideration of the work done by specialists in prosthetics and orthotics. It is a truism to assert that the advances in biomedical engineering are wonders to behold. They are also mixed blessings at times. More precisely, we may ask whether these devices to help the severely impaired, notably children, are ordinary or extraordinary means of treatment. The distinction is generally helpful even if at times the terms admit of ambiguity. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research has urged: "Despite its long history of frequent use, the distinction between ordinary and extraordinary treatments has now become so confused that its continued use in the formulation of public policy is no longer desirable."1 The primary concern of the discipline of ethics, which historically occasioned the distinction, is the person involved and then the technology.

Ethics, with medicine and law, understands "ordinary" means to include whatever is effective, standard, and available. But over and above this the ethical dimension has to do with the amount of inconvenience in terms of pain or cost that the patient and/or family must endure. If the inconvenience is grave, a relative term, the means may, but need not, be used. For what is medically or legally ordinary becomes extraordinary for this particular person. Ethics, again with medicine and law, regards "extraordinary" to mean whatever is experimental or offers no reasonable hope of success (recovery). But ethics, as just noted, is more concerned with person than with modality. Accordingly, if a given means of treatment would occasion excessive hardship, one is morally free to accept or reject that means. Since the terms are admittedly somewhat elastic, it might be preferable simply to speak of appropriate care or, in medical terminology, what is in the patient's best interests.

Interestingly, from a historical standpoint the distinction between ordinary and extraordinary or heroic measures was really a consideration of what has come to be known as "quality of life." In a non-medical context everyone understands the expression (as when, for example, politicians promise to raise the standard of living or clean the environment). In a health care setting no one misunderstands the expression when a person's condition is being ameliorated. But to suggest that future quality of life might be a determining factor in not treating is to invite confusion and opposition; all of a sudden many people do not seem to understand the expression. In the earlier "Baby Doe" federal regulations, recently invalidated by the U.S. Supreme Court, quality of life was disallowed as too subjective a criterion. Certainly it is quality of life which rehabilitation specialists enhance and ordinarily the means used pose no insoluble ethical problem. But it is helpful to recall that extraordinary personal circumstances can make ordinary technological means extraordinary and these personal factors must be carefully assessed. The conscientious pediatric nephrologist who is reluctant to begin dialysis for a child because the parents are not responsible enough to provide the many and necessary medications at home has a valid point. Likewise, there is much more to treating a child with spina bifida than providing orthopedic braces.

To be involved in health care is automatically to be involved in ethics and law. Just as health care professionals do not always agree on diagnosis and/or prognosis and just as court interventions are not uniform, so too will ethical judgments vary at times. The adage is still true that good medicine is good ethics. The primary concern of good medicine cannot be the injuncton to "do no harm" for this is both negative and vague. Rather, good medicine, as good ethics, must focus on preserving and promoting human dignity.

If anything is clear, it is that modern medical advances hold out both promises and problems. Moreover, to do what can be done is not always the ethical thing to do. Making such a value judgment is, as noted at the start, one of the principal tasks of ethical analysis.

*Department of Theology, Marquette University, and Department of Neurology, Medical College of Wisconsin, 9200 West Wisconsin Avenue, Milwaukee, WI 53226