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The Value of Parental Permission in Pediatric Practice

The American Academy of Pediatrics (AAP) Committee on Bioethics recently released guidelines stating that physicians may challenge parental authority to make medical decisions for their children only when failing to do so would result in “significant risk of serious harm.”1(pe6),2(p3) Drawing heavily on the work of Diekema,3 these new guidelines superseded the 1995 AAP Committee on Bioethics statement,4 which implied that a parent’s failure to comply with options that would promote their child’s best interests could undermine a parent’s moral right to make decisions for his or her child. Recently, Navin and Wasserman5 applauded this move, but argued that there were numerous additional reasons to support the expansion of parental latitude in decision making up to the threshold of harm. This position was heavily criticized by commentators, particularly those in clinical practice, and important questions were raised about the value and limits of parental decision making. In this commentary, we provide clinical illustrations of how taking parental permission seriously can help clinicians deliver better care to pediatric patients and may ameliorate some frustrations with parent requests for (what may appear to be) suboptimal interventions. The AAP’s 2016 documents that address parental permission better align AAP guidance with legal restrictions and clinical prudence, which both favor deferring to parents who request nonharmful options that fall short of the medical best interests of their children.1,2 More important, these new statements underscore the positive value of parental participation in pediatric decision making, noting that “parental permission and childhood assent is an active process that engages patients, both adults and children, in their health care.”1(pe13),2(p1) In a nod to the importance of shared decision making, the new guidelines identify the importance of engaging parents in the assessment of diagnostically relevant facts and values “by balancing health care needs with social and emotional needs within the context of overall family goals, cultural beliefs, and values.”1(pe13),2(p5) Pediatricians aim to promote the best interests of their patients. Therefore, they may be frustrated when parents disagree with their expert judgments in ways that fall short of that goal. It is our hope that focusing on some of the positive implications of parental permission can help ameliorate such frustrations.5 In the following 2 clinical illustrations, although the parental decisions may not seem to align with the patients’ best interests, it may nonetheless be valuable to respect the responsibility of parents to make decisions about their children’s treatment. Encouraging Resistance to Suboptimal Default Practices Consider the following hypothetical case: A woman was delivering her first child at a hospital birthing center. After parturition, the baby was placed skin-to-skin on the mother, where she cried softly, latched, and fell asleep. When a nurse later entered the room to administer a first dose of the infant’s hepatitis B vaccine, the couple demurred. They were not asked their reasons, but were perceived as noncompliant by the health care team. However, the parents’ refusal arose not from opposition to vaccines, but from a desire not to disturb the mother-child bonding process, and because they knew that vaccination could occur at the 2-week well-baby visit. In addition, risk to the infant was low because the mother had negative test results for the hepatitis B virus surface antigen. Like all institutions, hospitals follow rules and procedures that aim for the best aggregate results, but may be inattentive to the needs of outliers. Ideally, physicians can mediate the needs of particular patients and the standard protocols of their institutions. However, clinicians are only human, and the routines of practice may sometimes obscure idiosyncratic patient needs. However, parents are concerned primarily with their individual child’s needs in the context of their family values. Although parental indifference to standardized protocols can generate frustration, it can also highlight moments when institutional goals and practices may not be in the best interests of a child patient or family. Because the parents in this case were solely focused on the best interests of their child, via mother-infant bonding, they were able to resist a default practice that was good in the aggregate, but suboptimal in their particular situation, and whose shortcoming went unnoticed by habituated health care professionals. When we expand the latitude for parental participation in pediatric decision making, we promote parents’ ability to resist these sorts of suboptimal default routines.