Are the 21-Year-Old Baby Doe Rules Misunderstood or Mistaken?

TLDR

The Baby Doe rules, federal regulations enacted 20 years ago that restrict individualized care for infants under one year, remain in force and are supported by the American Academy of Pediatrics, despite criticism that they conflict with AAP guidelines favoring best‑interests decision‑making, as illustrated by a family confronting treatment options for a severely impaired newborn. The family concluded that comfort care was the best option given the infant’s poor prognosis and suffering. Contact: [e-mail].

Abstract

The current set of federal regulations about how to treat extremely ill, premature, or terminally ill infants <1 year of age, widely known as the “Baby Doe” rules, went into effect 20 years ago.1 They are amendments to the Child Abuse and Protection and Treatment Act, which are federal funding requirements for states to receive grants.2 Many neonatologists and other pediatricians reported that these rules immediately altered standards of care and limited clinicians’ and parents’ abilities to select individualized treatment plans and act in the best interests of infants.3,4 Their criticisms were akin to those of the courts5 in rejecting an earlier and similar set of Baby Doe regulations6 based on a Reagan-Administration interpretation of civil rights law.7 Yet, 20 years later these Baby Doe rules1 still stand, and so does the perceived support of them by the American Academy of Pediatrics because of comments by its leadership and Committee on Bioethics.8,9 These rules are inconsistent with other AAP guidelines recommending individualized decision-making by clinicians and families for seriously ill children based on the best-interests standard, or so I will argue.10,11 The choice between the Baby Doe rules and the best-interests standard is important, as a recent case conference may show. Yet, 20 years later these Baby Doe rules1 still stand, and so does the perceived support of them by the American Academy of Pediatrics because of comments by its leadership and Committee on Bioethics.8,9 These rules are inconsistent with other AAP guidelines recommending individualized decision-making by clinicians and families for seriously ill children based on the best-interests standard, or so I will argue.10,11 A family was faced with a decision about how to respond compassionately to their extremely premature and severely impaired newborn. In attendance were members of the parents’ extended family, including an aunt who was a hospice nurse and a cousin who was an adult pulmonologist. These 2 family members had extensive experience in caring for dying adults. The entire family agreed that given the infant’s poor prognosis and suffering intrinsic to his illness and treatments, it was in his best interest to have comfort … Address correspondence to Loretta M. Kopelman, PhD, Department of Medical Humanities, Brody School of Medicine, East Carolina University, 600 Moye Blvd, Greenville, NC 27858. E-mail: kopelmanlo{at}mail.ecu.edu