Pediatric Annals

Am I Ethical? How Do I Know?

Kevin McDonnell, PhD

Abstract

In an editorial introducing a previous issue of Pediatric Annals devoted to medical ethics, Milton I. Levine presented two cases from his long experience as a pediatrician.1 He ended each case discussion by asking: "Was I right or was I wrong?" Many pediatricians are asking that question these days, and many are dissatisfied with the answers they are getting. This article uses the following case report (White R. September 1990. Unpublished data) to discuss two different kinds of answers to ethical questions.

CASE REPORT

A 2-week-old female infant developed lethargy with abdominal distention and vomiting, a clinical picture consistent with volvulus. Surgical exploration found extensive ischemia of the entire intestine. The volvulus was corrected, and the infant was admitted to the neonatal intentsive care unit.

Two days later, signs of peritonitis appeared. She was returned to surgery where a large amount of necrotic bowel was removed. After 2 more days, additional areas of intestine including nearly all the jejunum and the remainder of the ileum had to be removed.

By the sixth hospital day, the infant seemed to be slowly recovering from her infectious process, but after the third surgery, she clearly had too little intestine to survive without long-term hyperalimentation. Physicians discussed the complications of longterm hyperalimentation and the absence of any alternative, and received the family's encouragement to provide all possible care for this infant.

Two days later, the infant required further surgical exploration that showed necrosis of part of her stomach and the remaining small intestine and colon. There are no reports of survivors with this degree of intestinal damage. The baby was returned from surgery without further intervention. Morphine was provided as needed, and fluids were supplied through a cutdown already in place.

The family was told that the child would probably die of infection in a matter of weeks. In the meantime, physicians would make every effort to keep the baby comfortable. The parents seemed to accept this prognosis.

Approximately 1 week later, the baby developed symptoms of mild cholangitis. With the parents' consent, the baby was not treated with antibiotics. As the baby's symptoms gradually worsened (increased jaundice, low grade fever, and increased need for morphine), the family requested that the infant be started on antibiotics. Physicians emphasized that this would not change the outcome and might only prolong the child's dying. The baby's parents responded by repeating their request that physicians begin antimicrobial therapy.

ANETHICSOFRULES

Discussions of cases like this one typically proceed by identifying the rules by which the case should be decided. Autonomy, beneficence, and justice are the set of rules commonly identified in medical ethics.2 Autonomy tells physicians to recognize the abilities of competent patients to make decisions for their own medical care, justice consists of principles for the social distribution of medical care, and beneficence, which is hard to construe as a rule, expresses a physician's role in doing good for patients.

The standard conflict occurs between autonomy and beneficence. Beneficence guided the traditional physician, and the traditional physician took it upon him- or herself to render treatment for the patient's good as the physician saw that good. When care was provided by primary care physicians who were part of local communities and immersed in their values, the beneficence of physicians was probably in harmony with the desires of patients. With the fragmentation of communities, the growing awareness of political pluralism, and with so much medical care rendered by specialists only remotely connected to locale, autonomy has emerged as the dominant mie for decision making.

The case presented above is a classic confrontation between autonomy and beneficence. The physicians…

In an editorial introducing a previous issue of Pediatric Annals devoted to medical ethics, Milton I. Levine presented two cases from his long experience as a pediatrician.1 He ended each case discussion by asking: "Was I right or was I wrong?" Many pediatricians are asking that question these days, and many are dissatisfied with the answers they are getting. This article uses the following case report (White R. September 1990. Unpublished data) to discuss two different kinds of answers to ethical questions.

CASE REPORT

A 2-week-old female infant developed lethargy with abdominal distention and vomiting, a clinical picture consistent with volvulus. Surgical exploration found extensive ischemia of the entire intestine. The volvulus was corrected, and the infant was admitted to the neonatal intentsive care unit.

Two days later, signs of peritonitis appeared. She was returned to surgery where a large amount of necrotic bowel was removed. After 2 more days, additional areas of intestine including nearly all the jejunum and the remainder of the ileum had to be removed.

By the sixth hospital day, the infant seemed to be slowly recovering from her infectious process, but after the third surgery, she clearly had too little intestine to survive without long-term hyperalimentation. Physicians discussed the complications of longterm hyperalimentation and the absence of any alternative, and received the family's encouragement to provide all possible care for this infant.

Two days later, the infant required further surgical exploration that showed necrosis of part of her stomach and the remaining small intestine and colon. There are no reports of survivors with this degree of intestinal damage. The baby was returned from surgery without further intervention. Morphine was provided as needed, and fluids were supplied through a cutdown already in place.

The family was told that the child would probably die of infection in a matter of weeks. In the meantime, physicians would make every effort to keep the baby comfortable. The parents seemed to accept this prognosis.

Approximately 1 week later, the baby developed symptoms of mild cholangitis. With the parents' consent, the baby was not treated with antibiotics. As the baby's symptoms gradually worsened (increased jaundice, low grade fever, and increased need for morphine), the family requested that the infant be started on antibiotics. Physicians emphasized that this would not change the outcome and might only prolong the child's dying. The baby's parents responded by repeating their request that physicians begin antimicrobial therapy.

ANETHICSOFRULES

Discussions of cases like this one typically proceed by identifying the rules by which the case should be decided. Autonomy, beneficence, and justice are the set of rules commonly identified in medical ethics.2 Autonomy tells physicians to recognize the abilities of competent patients to make decisions for their own medical care, justice consists of principles for the social distribution of medical care, and beneficence, which is hard to construe as a rule, expresses a physician's role in doing good for patients.

The standard conflict occurs between autonomy and beneficence. Beneficence guided the traditional physician, and the traditional physician took it upon him- or herself to render treatment for the patient's good as the physician saw that good. When care was provided by primary care physicians who were part of local communities and immersed in their values, the beneficence of physicians was probably in harmony with the desires of patients. With the fragmentation of communities, the growing awareness of political pluralism, and with so much medical care rendered by specialists only remotely connected to locale, autonomy has emerged as the dominant mie for decision making.

The case presented above is a classic confrontation between autonomy and beneficence. The physicians believed that there were no further interventions that would help this child. The desire to do what was best for this patient led them to recommend comforting, but not life-prolonging, care. The infant's parents, on the other hand, equally genuine in their concern for their daughter, wanted support to the limits of current technology. When two apparently beneficent parties conflict over what to do, discussion shifts from what should be done to who should decide - in ethics terms, from beneficence to autonomy.

One way to decide about care for such children is by appeal to rules such as the federal "Baby Doe" regulations.3 These regulations require that physicians respond to an infant's life threatening conditions by providing medically indicated treatment. However, such treatment may be withheld:

. . . when, in the treating physician's reasonable medical judgment, any of the following circumstances apply: (i) The infant is chronically and irreversibly comatose; (ii) The provision of such treatment would only prolong the dying, not be effective in ameliorating or correcting all of the infant's life threatening conditions, or otherwise be futile in terms of the survival of the infant; or (iii) The provisions of such treatment would be virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane.

The care of the infant described in the case report plainly falls under provisions two and three, which allow for withholding aggressive therapy. However, that fact will not help these parents reconcile themselves to their daughter's death.

Physicians reacted negatively to the first drafts of these regulations, finding them an affront to the good faith of the medical community.4 Physicians believed the regulations engender suspicion at a time families need an atmosphere of trust and security.

Even as presently drafted, many pediatricians believe the regulations demand infants be treated more aggressively than is appropriate.5 The rules are taken to restrict the autonomy of physicians and parents. That, of course, is just what the regulations were designed to do. They were introduced to ensure that parents and caregivers did not invoke autonomy to make socially unacceptable decisions. They require minimum standards of beneficence.

But can beneficence be expressed as a rule at all? Rules inevitably take on the color of regulations, impositions from outside. Because they must fit a variety of situations, mies must be general and technical. The current implementation of the Patient SeIfDetermination Act is an example of attempting to turn standards of good doctor-patient communication into regulations.6 Even when they serve to ratify the good practices in which people had already been engaged, the intrusive character of regulations is still resented.

If beneficence were a rule, it would be easy to know if one were acting ethically. Physicians could judge the correctness of their actions by comparing them to established guidelines. Perhaps our quest could be ended with improved Baby Doe regulations that told pediatricians just what to do and when to do it.

The inadequacy of this answer is apparent. Ethical rules have a role, but it is not to provide an answer for every question that arises in patient care. Asking this is like looking for the rules of chess or football to tell the players what to do next. The rules set outside limits or boundaries to what can be done. They lay out the field, as it were. Players play by the rules, within the guidelines of the game. The rules are the boundaries of fair play. Good play requires a plan: strategy in approach and excellence in execution.

Beneficence is a matter of execution. Good physicians know that helping people means more than following rules. It may even require bending those rules that confine ethically good action. Beneficence is more than a rule; it is the virtue of doing good for others.

AN ETHICS OF VIRTUE

We are so used to thinking of ethics as following rules that it is difficult to think differently. Facing the problems their rule-based ethical systems have generated, philosophers have recently been rethinking ethics.7'9 The Greek philosophers who invented ethics did not have an ethics of rules. The Greeks wanted to know how it is good for people to live, the character of human flourishing. They thought of the good life as an enterprise for virtuous people and tried to sketch out the ideal of such a life.

In his doctrine of the golden mean, the Greek philosopher Aristotle developed the idea that good action lay in a mean between two extremes. A courageous person, he observed, acts in a middle way between rash people who rush into fights prematurely or unnecessarily and cowards who back away from battles they should fight.10 Beneficence, doing good, can be analyzed on the same model.

The first step is describing the emotion or drive in which the virtue originates. Beneficence is driven by the spontaneous feelings we have for fellow human beings, especially the vulnerable. Pity is Aristotle's name for the emotion we have for another person's pain or suffering. It requires fellow feeling and rests on the judgment that a similar fate could befall oneself or those one cares for. This fate is not something deserved; we do not pity those who have brought misfortune on themselves. That is why we pity children. No one deserves to be born a crack baby or an acquired immunodeficiency syndrome (AIDS) baby. Children do not deserve the sins of their parents. It is often more difficult to have the same feelings toward adults because they are much more likely to have brought their suffering on themselves.

Beneficence is the virtue that structures this emotion into constructive action. Like the other virtues, beneficence is a middle ground. On one extreme is callousness; on the other, hypersensitivity. Why are some physicians callous, failing to respond to patients' needs? Some are emotional cripples, people who simply lack the normal feelings that humans have for one another. Others are victims of bad moral education who believe that they should not allow themselves feelings and who have therefore suppressed their natural sympathies. The callousness bred in some residency training programs may even snuff out the feelings that led some physicians into the practice of medicine in the first place.11 Because one can adhere to moral rules without much feeling at all, some callous people find comfort in such an ethic.

Hypersensitivity equally destroys beneficence. People who are completely swept up in their feeling for the suffering of others can fail to help. Perhaps driven by guilt or an exaggerated sense of moral responsibility, the oversensitive person tries to do more than can be done for the relief of illness and suffering. Such people intervene too much, pushing on with aggressive therapy when only comfort care is appropriate.

Beneficence is the virtue of acting effectively on the sufferer's behalf. The virtue is not the feeling but the actions that follow from it. Beneficent physicians are those who translate their feelings into action. The care of the infant in the earlier case report tests the limits of beneficence because it starts with effective medical action. Surgeons remove sections of infected bowel, but are forced to stop when there is not enough left for the baby to survive. Beneficence is both the impetus that drives physicians to take care of others as well as the virtue of knowing when to stop.

The parents of the infant in the case report are suffering from an understandable excess of feeling for their daughter. For the moment, the child appears healthy and responds normally. But antibiotics, usually standard therapy, are no longer appropriate. From now on, medication would only prolong the child's dying. Physicians must change their focus of care. The infant can profit only from palliation of pain and discomfort; her parents need intensive supporting care. The primary pediatrician must bring empathy to the parents' situation, relieving guilt, and helping the family to deal with grief and loss.

What does an ethic of mies have to say to a story like this? Neither parents nor doctors are even close to breaking the mies. Physicians are not trying to exclude parents from decision making or otherwise subvert parental autonomy. They are only attempting to make those decisions genuinely beneficial to the child. In such a situation, everyone is acting within the mies. The issue is how best to care for the child in her final days.

How do doctore know they are being ethical, that this care is the right decision for the infant? Playing by the mies is important, but it is not enough. Pediatricians must use a variety of skills to reconcile these parents to their baby's fate. These skills are beyond recipes; all the traditional virtues of physicians must come into play. Good doctors are sympathetic: they listen, they communicate, they are there when families need them. Good doctors develop a style for this, a personal stamp on the way they handle difficult cases. Their whole personality is activated. Rules do not capture this style any more than they confine the work of great designers or the play of outstanding athletes. Such performances are not above the law. They are within the law, but show the virtues, the qualities of excellent work.

How can doctors know they are ethical? In part, because they act within the mies. Most of all, however, they are ethical because they are carrying out the ideals of good medical practice. Beneficence is part of that ideal. Playing by the mies means that we are not doing wrong. Acting ethically, being a good doctor, goes beyond this.

REFERENCES

1. Levine Ml. A pediatrician's view. Pediao Ann. 1989;18:227-228.

2. Beauchamp T, Walters L. Ethical theory and bioerhics. In: Beauchamp T, Walters L, eds. Contemporary Issues m Bioethics. Belmont, Calif: Wadsworth Publishing Co; 1988:1-41.

3. Department of Health and Human Services. Child abuse and neglect prevention and treatment program. Federal Register. April 15, 1985;50:14878-14901.

4. American Academy of Pediatrics ? Hecfcler, 561 F Suppl 395, 397 (DDC 1983).

5. Kopelman LM, Irons TG, Kopeiman AE. Neonatologists judge the "Baby Doc" regulations. N Engl J Med. 1988;318:677-684.

6. Wolf SM, Boyle P, Callahan D, Fins Jl Jennings B, Nelson JL, et al. Sources of concern about the patient self-determination act. N Engl } Med. 1991 ;325:16661671.

7. Maclntyre A. After Virtue: A Study in Moral Tneory . Notre Dame, lnd: University of Notre Dame Press; 1981.

8. Nussbaum M. The Fragility of Goodness: Luck and Ethics m Greet Tragedy and PniiosofAy. New York, NY-. Cambridge University Press; 1986.

9. Williams B. Ethics and the Limits of Philosophy. Cambridge, Mass: Harvard University Press; 1985.

10. Aristotle. Nicomaciwan Ethics. 11. 2.

11. CoHord JM, McPhee SJ. The raveled sleeve of care: managing the stress of residency training. JAMA. 1989;261:889-893.

10.3928/0090-4481-19920501-07

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