Excerpt from Bioethics in Pediatric Practice

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Ethics and Medicine

Even before Hippocrates, ethical behavior and medical practice have been linked. The Mesopotamian Empire's Code of Hammurabi outlined the physician's dual responsibility to the patient and to society. The Hippocratic Oath, still pledged in many medical schools, defines physician character and patient care responsibilities. Although bioethics as a separate field of study has branched out and become mature in its own right, ethical behavior remains fundamental to the practice of medicine and defines medicine as a profession. This special or additional obligation to patients (or clients), with its inherent responsibilities and limitations (eg, confidentiality) exists in few other professions (eg, the clergy, law).

Ethical decision-making can be especially challenging for pediatricians. The patients themselves have limited life experiences and are developmentally unprepared to make decisions about their care. Instead, pediatric patients depend on their parents or another authority figure because young children often cannot understand what is best for them or the ramifications of their actions. Their immaturity and vulnerability create a different decision-making context than that of adult patients.

Specific Pediatric Issues in Bioethics

The problem of informed consent

With adults, the principle of autonomy is the focus of consent, meaning that patients have the right to make their own decisions. The physician's responsibility is to inform the adult patient about the disorder. The physician is expected to describe the proposed treatment, including its likelihood of success, risks, benefits, and costs. The physician should also discuss other treatment options, including the option of no treatment, again in terms of risks, benefits, and costs. This discussion should occur in a manner such that the patient can understand what is being discussed and, if appropriate, have an opportunity to review the information in a printed format, as well. The patient is then asked to give specific consent for the treatment or intervention planned. Key elements include providing adequate information, assessing patients' understanding of the information, and then assuring that patients have the freedom to choose the treatment that they feel is best for them.

In child or adolescent patients, the circumstances are more complicated. Legally, parents or legal guardians have the right and responsibility to give (or withhold) consent for procedures or treatments. This, of course, assumes that parents or legal guardians will act in the best interests of the child because of their close relationship with the child. In children, the principle of "best interests of the child" is more central than the one of autonomy. In addition, involvement of the child in a developmentally appropriate fashion in the decision-making process is also considered the ethical responsibility of the physician.

Best protection for the child

Hippocrates wrote to his fellow physicians that, in working with patients, physicians should "First, do no harm." This time-tested maxim continues to hold true. However, defining benefit or harm is sometimes difficult. The problem in pediatrics is even more pronounced because, in many instances, patients cannot speak for themselves and/or do not have the developmental maturity to balance short-term discomfort against possible long-term positive outcomes. Because children are not free agents, their welfare should be protected to a greater-than-usual degree.

The process of determining the best course of therapy involves setting both short- and long-term goals, recognizing the specific values of the child's family and cultural groups, and maximizing opportunities for the child to grow, develop, and realize his or her fullest potential. Ideally, both the parents or legal guardians and the physician should approach the issue of consent from this perspective. However, sometimes, the legal guardians or even the physician has competing interests. In those situations, special care should be taken to keep in mind at all times what is in the best interests of the child. Examples of this kind of problem are when a family is strained financially because of the costs of the child's medical care or feels that siblings have been neglected because of the time required by the sick child.

Similarly, in the case of physicians, the doctor who asks a family to give consent for organ harvesting and donation if life support is turned off for their child should not be the physician who will be transplanting those organs into someone else.

Physicians as advocates

Decisions about the best course of therapy for a child often involve issues beyond medicine. A child's social structure, environment, and parental involvement all affect these decisions. The physician is placed in the role of an advocate for the child. Although this advocacy role is somewhat uncomfortable at times, it is one of the features of medicine as a profession, rather than the merely technical exercise of human body repair and maintenance.

The potential adult

Children should always be treated with an eye toward their eventual adulthood. As they mature, children naturally gain increasing responsibilities for decision-making and self-expression. Medical decisions are no different. Clearly, by age 13 years, most patients should be able to understand the basic aspects of their disease process, participate in discussions about therapeutic options, and express their preferences about treatments. Although older children remain emotionally and financially dependent on their parents, physicians should respect their increasing autonomy by involving them more in the decision-making process.

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