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, and the pediatric surgeon. Medical ethicists have characterized the primary duty of the surgeon, as healer, as one of promoting good and acting with beneficence, while keeping the patient at the center of all decisions. The ethical duty of beneficence requires pediatric surgeons to: (1) honor their fiduciary role as experts in the benefits, risks, and expected outcomes for proposed treatments; (2) accept the vulnerability of their pediatric patients and parents; and (3) place the interests of their patients over personal or third-party interests. Furthermore, pediatric surgeons are obliged to provide care for their infant patients with major congenital anomalies over an extended period of time, often well into adulthood.

The doctrine of informed consent rests with the widely accepted concept in western societies, and increasingly among many cultures, that competent persons or their designated surrogates (ie, parents for their minor children) have the ethical and legal right/responsibility to make their own medical and surgical decisions, and to choose which course of treatment is preferable. Medical decisions include consideration of the patient’s goals and values, based on cultural, religious, social, and other relevant norms. In The Virtues in Medical Practice, Pellegrino and Thomasma broadened informed consent to include the fiduciary responsibility of the physician in safeguarding patient integrity within a relationship governed by the promotion of healing, honesty, and compassion. Thus, informed consent respects patient autonomy (in pediatrics, the child and parents), and requires physicians to provide the information necessary to make reasoned decisions. Informed consent implies that the ethical principles of beneficence, nonmaleficence, and justice are upheld, along with the patient’s autonomous right to decision making.

Given the ever-increasing diversity of contemporary society, pediatric surgeons may encounter children and parents from diverse and heterogeneous cultures. In the context of surgical decision making, culture implies a common and accepted way that a group of individuals think, feel, and act when faced with choices. As a cultural group they are characterized by generally shared beliefs, values, attitudes, behaviors, and notions of what is meant by certain actions. For example, most people from western cultures consider disease to be a disruption in biological processes, while individuals from other cultures may consider disease as having spiritual or metaphysical causes. While most people from progressive western countries embrace advanced technological life-preserving treatments, individuals from other cultures may employ a holistic approach to the use of life-extending therapy. For example, parents may question how prolongation of life for an imperiled infant would affect the well-being of their family and extended community. When persons from a minority culture immigrate to another country, they may adopt the prevailing attitudes of the majority population, adhere strictly to their native beliefs, or adopt a mixture of western attitudes and their native cultural mores. During the process of informed consent, the pediatric surgeon should seek ways to reduce cultural barriers by asking questions about patient/parental values, actively listening to their answers, indicating that their views are important, giving ample time to the discussion, and, when necessary, seeking assistance from experts who better understand the prevailing cultural beliefs.

Four elements comprise the essential components of the informed consent process:

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   The provision of information, in clear and understandable language, about the nature of the surgical disorder, the recommended plan for diagnosis and treatment, the potential benefits and risks of the proposed operation, anticipated outcome, and long-term prognosis. The range of possible alternative treatments should be presented, including the option of no treatment.

   
   
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   An assessment by the pediatric surgeon of the patient’s/parents’ understanding of the information.

   
   
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   An assessment by the pediatric surgeon of the patient’s/parents’ competence to make these decisions.

   
   
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   The ability of the patient and parents to make decisions free of coercion or manipulation by the pediatric surgeon or others.

In the United States and in most countries parents have the legal and ethical responsibility to be the surrogate decision makers for their minor children, until the adolescent reaches 18 years of age and she/he can give legal consent for surgical treatment. Certain exceptions to parental surrogacy for consent include the ability of minor children to seek treatment for sexually transmitted diseases and care of pregnancy-related matters and contraception. Pediatric patients with chronic illnesses, such as cystic fibrosis, sickle cell disease, muscular dystrophy, and end-stage liver or renal disease, may be given “mature minor” legal designation so that they can make their own medical decisions. In these cases it must be determined that the patient has sufficient maturity to understand the disease, its chronic and potentially terminal nature, and the benefits/risks of life-extending therapies.

The American Academy of Pediatrics recognizes that older children and adolescents should be involved in discussions and decisions about their health care and that their assent should be obtained prior to embarking on treatment. The process of assent is similar to informed consent and is characterized by:

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   The use of developmentally appropriate language to help the child/adolescent become aware of the nature of the medical/surgical condition

   
   
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   Explaining what the patient can expect with the proposed diagnostic tests and treatments, including how pain will be monitored and controlled

   
   
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   Active solicitation of the patient’s understanding and willingness to accept the proposed treatment and/or operation.

Seeking assent from an older child or adolescent may be challenging when the proposed surgical procedure involves an alteration of bodily image or function, even if temporary in duration. In these situations it may be helpful to invoke assistance from patient support groups and other patients with similar health challenges. Another concern rests with the adolescent’s overly optimistic view of the anticipated postoperative result, in terms of either improved bodily image or “perfect” function.

An example of a unique challenge for pediatric surgeons is the informed consent process for weight reduction surgery in morbidly obese adolescents. While objective evidence indicates that pediatric morbid obesity is associated with serious metabolic derangements and a lower quality of life, the optimal surgical intervention remains to be defined by multi-institutional prospective clinical trials. Specific issues about bariatric surgery that should be considered during the informed consent process with adolescent patients and their parents include the following:

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   Ability of the adolescent and parents to retain information about the proposed bariatric intervention and its risk/benefit profile. A study of adult patients who underwent gastric bypass surgery indicated that two thirds were unable to correctly recall information about the risks of the operation in the immediate postoperative period.

   
   
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   Adolescent patients may have a limited understanding of the irreversibility of certain bariatric operations, such as the gastric bypass. They may not fully realize that the new anatomic arrangement will be permanent and may include potentially unpleasant lifelong side effects.

   
   
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   The long-term consequences of bariatric surgery performed during adolescence are unknown in terms of unanticipated and unforeseen problems. While reduction of associated metabolic derangements and reasonable weight loss are achieved in the early postoperative period, it is unknown whether these benefits are maintained over several years and into adult maturity.

   
   
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   As a result of media publicity showing former morbidly obese individuals transformed into svelte and highly attractive persons after bariatric surgery, adolescent patients and their parents may have an overly optimistic view of the postoperative outcome in terms of physical appearance and overall well-being.

   
   
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   The pediatric surgeon is obligated to disclose her/his postoperative results following each type of bariatric operation, including complications and durable weight loss.