Should there be a direct federal role in deciding the treatment for severely impaired newborn infants?
Under existing law and practice, the interests of such infants are protected in a number of ways: 1) by their parents, who have sole legal authority to make treatment decisions for their infant children and who are presumed under the Constitution and the law of all 50 states to act in the best interests of their children; 2) by individual and consulting physicians, who practice medicine because they wish to preserve and enhance life and who have duties under state law to report instances of "medical neglect" -- parental refusal to authorize necessary treatment -- to state child protective agencies; 3) by hospital-based infant care review committees -- made up of health professionals, clergy, ethicists, social workers and lawyers -- which provide parents with information and perspective and which, as appropriate, review treatment options; and 4) by state child protective service agencies and state courts, which must make the determination whether parents should be removed as decision-makers for their children in extreme cases.
In a June 27 op-ed piece, Nat Hentoff repeated his argument that direct federal investigation and regulation of individual treatment decisions is also necessary under authority of Section 504 of the Rehabilitation Act of 1973. The Supreme Court has just granted review of a decision in a case brought by the American Medical Association, among others, enjoining such a federal role as unauthorized by Congress. The lawyers will argue the law, but it is important to stress that Hentoff is also wrong as a matter of policy.
Hentoff never addresses two critical questions. Are there harms to infants that justify a direct federal role in individual cases, given the other levels of protection for infants? Are there harms caused by such a direct federal role?
First, there is no problem warranting a federal role. A 1983 president's commission report on the problem reached this conclusion. The Department of Health and Human Services admitted recently that "only a very small fraction of births involve any serious question of survival" and only a "fraction" of this tiny fraction would "involve even a potential allegation of medical neglect" under state law. Indeed, before its 504 approach was enjoined, HHS had investigated 49 cases and found no problem in any of them. Moreover, in the now famous "Baby Doe of Indiana" case, which Hentoff has erroneously cited, questionable parental decisions were referred to the state courts by health care providers and state agencies without any federal involvement.
Second, the harm of federal "Baby Doe" squads (a federal team investigating individual cases) is obvious -- and well documented. At a time of maximum stress for parents, the squads descended on hospitals and interfered with the roles of parents, physicians, infant care review committees, hospitals and state authorities. Often these Baby Doe squads would consist of officials with no training in the relevant medical specialties. Moreover, a federal role would necessarily involve "federalizing" medical standards in a highly complex and rapidly evolving area of medical practice. In fact, in a New York case related to the AMA case, HHS pursued parents even after the state courts and the state child protective service agency concluded the parents had acted properly.
In contrast to the HHS regulatory approach, Congress last fall passed a bill that would augment the state's capacity to deal with this complex, often tragic issue. Congress expressly rejected a direct federal role and establishment of federal medical standards. Unless and until there is far more compling evidence that the parents, providers, ethics committees, state agencies and state courts cannot do the job, reliance on the state law framework is the appropriate approach, given the proven, inevitable harms of a direct, intrusive federal role in this most sensitive area.