Ethical Issues in Neonatology
Alan R. Fleischman
Scientific and technologic developments over the last several decades have made substantial advances in the care of neonates and have made it possible to save the lives of the majority of even the sickest and smallest babies. Newborns as young as 23 to 24 weeks gestational age and weighing about 500 g survive at a rate of greater than 30% in most neonatal centers in the United States. Infants of 1,000 g and 28 weeks of gestation, thought to be at the threshold of viability in the 1960s and 1970s, have a consistently greater than 95% survival rate. In addition, surgical techniques have been developed to correct or ameliorate congenital anomalies of the heart, kidney, intestine, liver, and brain. Intravenous parenteral nutrition allows infants to grow and gain weight with normal development for weeks, months, or even years without oral intake. These advances in neonatal medicine have enhanced the lives of countless children, yet at the same time, they also have resulted in saving the lives of some children who are left with severely disabling and handicapping conditions.
Severe disability has been reported in approximately one-third of the surviving infants born at less than 25 completed weeks of gestation. Such major morbidities include cerebral palsy, mental retardation, blindness, or deafness. Even infants born at 26 to 28 weeks’ gestation have a significant risk of poor outcomes. It is clear that, despite a major decrease in mortality in premature infants of very low birth weights, no concomitant decrease in percent morbidity has been achieved.
Clinicians are unable to predict with any degree of certainty the long-term outcome of individual infants who are critically ill. Caring for neonates having the potential for survival, but with a poor future quality of life, creates major ethical dilemmas for clinicians and parents alike. An awareness of these ethical dilemmas or value conflicts is not new to those responsible for the care of infants. Historically, physicians felt obligated to make treatment decisions based on their personal beliefs about the future quality of life for their patient. At times, professionals shared this decision making with the family, but often it was thought to be part of the doctor’s job to make such choices. These decisions usually were made within the privacy of the delivery room, nursery, or pediatric unit. Rarely discussed openly, most members of society did not realize that value-laden decisions were being made and rationalized as medical judgments. To a large extent, families and society wished these decisions to be private matters, because they were far too complex and personal for public involvement and debate.
However, another sort of revolution has occurred concomitant with the evolution of new technology in neonatal intensive care. The role of the American physician has changed from that of the highly respected and rarely questioned paternalistic decision-maker into a collaborator who provides recommendations for health care decisions that are made in conjunction with the patient and family, rather than by the physician alone. This changing physician’s role is consistent with an increasing desire for autonomy reflected in many parts of American society. Patients and families expect to be fully informed and increasingly responsible for decisions about their own health care. In the pediatric context, family-centered care has emerged as the operationalization of increasing respect for the importance of the family in ensuring the health and well-being of children. Family-centered care in neonatology is grounded in collaboration among the family and health professionals responsible for the care of a sick infant; it may involve the family in all aspects of care and in shared decision making in the best interests of the child.
PATIENT AUTONOMY AND THE BEST INTERESTS OF THE CHILD
In ethics, the principle of respect for persons argues for a patient’s fundamental right to self-determination. This right to autonomous choice for adults with capacity empowers them to consent to or refuse recommended treatments, even when the physician perceives those treatments to be in the patient’s best interest. A second conviction of the principle of respect for persons requires that those individuals who lack the ability to make choices for themselves are entitled to special protections. Neonates clearly are not autonomous and are unable to participate in decision making about their own care.
Respect for a person’s right of self-determination is operationalized in medicine in the doctrine of informed consent. This doctrine assumes that the patient can understand the risks and benefits of alternative treatments and can make an informed choice. The process of informed consent, when it relates to young children or to any individuals who lack the capacity to decide for themselves, invokes the use of a proxy or surrogate. A proxy consent is not based on an individual’s choice, but rather on another’s perception of the appropriate choice.
Many have argued that the respect for a person’s fundamental right of self-determination should be extended to respect for the family as an autonomous unit making substituted judgments for members who cannot participate in decision making. This extension of the principle of respect for persons occasionally may be problematic when applied to neonates. The principle of informed consent for autonomous adults is extremely powerful in that it allows capable adults to refuse treatments, despite negative consequences. However, parental refusal of treatments that are deemed to be beneficial for their infant does not hold the same weight as refusals by competent adults for treatments on themselves. Parental refusal of a needed therapy does not relieve the physician or other health care provider from an ethical duty to the child, particularly if the refusal of such treatment puts the child at significant risk.
To preserve the child’s future right to autonomous decision making, guardians of pediatric patients are charged with the responsibility of asking what best promotes the child’s interests. This child-centered “best interest” standard emphasizes that children ought to be valued as individuals, and it protects
children in situations involving conflict between what is best for the child and what is best for others. This principle supports making a decision solely for the benefit of the infant, sometimes, although rarely, even in conflict with parental beliefs.
children in situations involving conflict between what is best for the child and what is best for others. This principle supports making a decision solely for the benefit of the infant, sometimes, although rarely, even in conflict with parental beliefs.
Determinations of best interest often are made in the presence of significant medical uncertainty about the outcome of the proposed treatment. In general, physicians have a great deal of difficulty in admitting their lack of certainty about the benefits of continued treatment or the initiation of new interventions. Jeff Lyon, in his book Playing God in the Nursery, graphically portrays the dilemma of uncertainty: “If it is hard to justify creating blind paraplegics to obtain a number of healthy survivors, it is equally hard to explain to the ghosts of the potentially healthy that they had to die in order to avoid creating blind paraplegics.”
American neonatologists tend to deal with this uncertainty by considering it far worse to let an infant die who could have lived a reasonable life than to save an infant who becomes devastatingly disabled. Both outcomes are tragic. What is clear is that the value-laden decision about what is in the best interest of an individual infant often is uncertain. Many have argued that those who will bear the burden of the decision—namely, the family—ought to have the major role in making it. When faced with a lack of certainty about what is in an infant’s best interest, the physician’s obligation is to share with the family a clear understanding of the various treatment options and make a recommendation consistent with what the treatment team believes is in the child’s best interest. Ultimately, however, in these difficult cases, family discretion should prevail. The physician’s values should not be imposed inappropriately, and continued treatment should not be forced, when hope for benefit is unlikely.
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