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Key Points

  1. The primary duty of the pediatric surgeon as healer is one of promoting good and acting with beneficence, while keeping the patient at the center of all decisions.

  2. The pediatric surgical informed consent process includes the elements of providing information that includes risks, benefits, outcomes, and alternate therapies; assessment of the ability of patient/guardian to make decisions; and the ability of the patient/guardian to make decisions free of coercion.

  3. A clinical team's common moral framework is essential to address concerns of ethical conflict.

  4. The pediatric surgeon has the responsibility to inform patients and families about medical error and adverse events. Failure to do so is a breach of professional and ethical norms.

  5. When innovating a new operative therapy, the early development of a formalized research protocol will help to define risks, benefits, and outcomes. The informed consent process for innovative procedures needs to be done to a higher standard.

Pediatric surgical ethics came into existence with the convergence of several interrelated factors: technological advances in medicine after World War II, activism of the 1960s, and recognition that the traditional paternalistic approach to patient care contradicted contemporary notions of individual rights. In October 1971 an audience attending The Joseph P. Kennedy Jr. Foundation International Symposium on Human Rights, Retardation and Research was shown a documentary film from The Johns Hopkins Hospital about a newborn infant with trisomy 21 whose parents refused to give permission for lifesaving surgical care to repair a congenital intestinal obstruction. For the first time the public was permitted inside the “secret sanctum” of pediatric medical decision making, a place historically reserved for parents and physicians. Subsequently, in 1973 Duff and Campbell reported in The New England Journal of Medicine that 43 of 299 consecutive deaths (14%) in the neonatal intensive care unit at the Yale-New Haven Hospital resulted from decisions to withdraw or withhold lifesaving treatment. This article caused a furor in the lay press, as the American public raised concerns over the morality and legality of allowing certain infants to die without treatment. In 1977 when Shaw et al published a survey of the attitudes of pediatric surgeons and pediatricians about difficult choices in treating and not treating infants with a variety of congenital anomalies, the centrality of ethics was firmly situated in pediatric surgical decision making.

In this chapter the moral dimensions of pediatric surgical health care will be considered as they relate to care decisions for individual patients, in addition to the larger context of societal interests in pediatric surgical practice. Since this textbook focuses on operative pediatric surgery, specific issues in pediatric surgical ethics will be discussed: informed consent, decision making for infants and children with uncertain prognosis, disclosure of surgical error, and professional responsibilities for surgical innovation and research.

The ethical responsibilities of the pediatric surgeon are shaped by the unique relationship of the 3 parties: the infant or child patient, the parents, ...

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