Baby Doe Rules Have Been Interpreted and Applied by an Appellate Court: In Reply

Field: Medicine (Health Sciences)

In Reply.—I thank Dr Clark for supporting my view1that the American Academy of Pediatrics (AAP) should withdraw its apparent support of the “Baby Doe”rules.2These regulations had to be adopted by states as a precondition of federal Child Abuse Protection and Treatments Act funding.3I especially appreciate Dr Clark bringing into the discussion the Wisconsin Appellate Court’s interpretation and application of these rules in Montalvo v Borkovec.4Even if this decision does not directly test the criteria for withdrawal or withholding of maximal treatments for infants as directly as the Supreme Court did in the Bowendecision,5it offers an interpretation of them by an appellate court, showing unambiguously that these federal funding regulations do not allow the sort of discretion needed for individualized and compassionate decision-making for infants advocated by the AAP.6,7Wisconsin’s Appellate Court understood these regulations as requiring maximal treatment unless the infant is in an irreversible coma or dying. The case concerned a 23-week-old premature infant, and the Wisconsin Appellate Court ruled that the baby’s parents had no role in consenting for or refusing maximal treatment because the child was not dying or comatose. “The implied choice of withholding treatment proposed by the plaintiffs, is exactly what CAPTA [Child Abuse Protection and Treatments Act]prohibits.”4This was the same interpretation that the US Supreme Court5gave in its review of an earlier but similar set of Baby Doe rules8that President Reagan promulgated under civil rights law.9In contrast to the Wisconsin court,4however, the Supreme Court in Bowen v American Hospital Association5offered scathing criticism of the first set of Baby Doe rules themselves, saying no evidence had been given for the need to adopt these rules and that they ignored the role of parental consent, sought to alter standards of care, and took an oversimplified approach to medical decision-making. This understanding exactly squared with the views of many neonatologists.10Thus, Dr Clark offers more evidence to show that the Baby Doe rules unambiguously embrace the right-to-life view that maximal treatments cannot be withheld or withdrawn unless an infant is dying or comatose. The letter and spirit of these Baby Doe rules exactly reflect the view of their proponents, President Reagan,11his Surgeon General, C. Everett Koop,12and other advocates who claimed that the Baby Doe rules were needed to stop unacceptable “quality-of-life” interpretations about what was best for infants.13,14Thus, claims by some members of the leadership of the AAP that the Baby Doe rules are misunderstood, allow all reasonable discretion, or can be mitigated by an ethics committee are mistaken.13–15The words “reasonable medical care,”“appropriate,” “inhumane,” or“virtually futile” taken in context do not open the doors of discretion as these defenders claim. Some assert that these special rules are needed for infants <1 year of age because clinicians and parents disvalue disabled infants, but they offer no data for such a sweeping conclusion.14The Baby Doe rules are inferior to the older and more established best-interests standard, first in allowing, within limits, greater individualized treatments plans. I defend what I call a“negative version of the Best Interests Standard.”16It instructs decision-makers to assess what act(s) are in the incompetent individual’s immediate and long-term interests and maximize his or her net benefits and minimize net burdens, setting that act(s) as a prima facie duty. Second, this standard presupposes a consensus among reasonable and informed persons of good will about what choices for the incompetent individual are, all things considered, not unacceptable. Third, the scope of the best-interests standard should be understood in terms of the scope of established moral or legal duties to incompetent individuals. An advantage in analyzing the best-interests standard in this way is that we establish limits while making room for differences of opinion among informed and competent people of good will about what is best given the available options. Some people may decide to forego painful and highly experimental treatment for themselves or their relatives for pain-free weeks at home, whereas others might want to pursue every chance no matter how small.The best-interests standard is also superior to the Baby Doe rules because it does not single out 1 group of incompetent persons, infants<1 year of age, for a “right-to-life” policy that others would not tolerate for themselves. Faced with a choice between using maximal treatments to prolong a life of unmitigated pain and suffering or to prolong a noncomatose, minimally conscious life,many people and policy makers believe that there are sometimes worse things than dying.6,7,17–20This attitude is reflected in the first priority of palliative care,namely, the relief of pain and suffering.19If we agree that it is wrong to do to others what we would not want for ourselves and that we would not want a Baby Doe policy for ourselves(maximal treatment unless we were dying or comatose), then we should not adopt the Baby Doe policy for infants <1 year of age.The best-interests standard is superior to the Baby Doe rules as a guidance principle because it uses the same rule for all persons lacking decision-making capacity and it permits, within socially sanctioned limits, the sort of compassionate and individualized decision-making widely recommended by policy makers,17–20including by the AAP.6,7