NATIONAL HARBOR, Md. — Helping families make clinically well-informed decisions for individual children is challenging when choices involve socially and culturally sensitive issues that can have enormous significance. In response, physicians gathered at the Interim Meeting of the American Medical Association (AMA) approved a general framework to help physicians work with families to balance the child’s interests with the scope of parental authority.

“Few people know what they would do if faced with a life-altering medical situation involving their child,” said AMA Immediate Past President David O. Barbe, M.D. “When confronting their child’s unexpected diagnosis or uncertain prognosis, parents can struggle to balance their own hopes, fears, and value commitments with the consequences of a medical choice. They need help. The AMA’s new ethical framework emphasizes a shared decision making process where doctors help parents reach clarity and empower choices carefully tailored for each patient.”

Parents are expected to make health care decisions in children’s best interest. In doing so, they are expected both to protect children and, at the same time, to empower children and promote children’s developing capacity to become independent decision makers.

Physicians who counsel parents facing life-altering medical decision for a child need to be aware of the ethical complexity of their role. These situations can involve a mix of factors, including the current state of medical technology and society’s prevailing legal, political, economic, and cultural attitudes. Each of these factors can shape how treatment options are categorized as beneficial, futile, or somewhere in between. The greater the uncertainty or lack of robust evidence supporting alternative courses of action, the more difficult the task becomes.

In situations when no single approach can be designated as essential, preferred, or acceptable, the AMA guidance for ethically sound practice recommends a process of shared decision making for pediatric patients. Parents, physician and the patient — in keeping with the child’s capacity to participate — should seek a shared understanding of goals and determine a plan of care that is carefully tailored for the patient’s unique circumstances. 

This approach to shared decision making will not always lead to decisions that doctors would prefer. Sometimes, parents’ values are different from those of professionals. When decisions about treatment fall within the zone of parental discretion, however, the process should give great deference to parental preferences.

When there is ongoing disagreement about patient’s best interest or treatment recommendations, the AMA guidelines recommend that clinicians work with ethics committees and other institutional resources to define the boundaries for parental discretion at each medical center.