Extreme prematurity and parental rights after Baby Doe.

Contemporary ethical and legal norms hold that all human beings born alive should be treated equally, regardless of disability. Yet there is a strong sense that some lives are so diminished in capacity for interaction or experience that little good is achieved by providing medical treatments necessary to keep them alive. In addition, many persons believe that the parents who have the chief responsibility to provide care should have a dominant say in whether their children are treated. (1) Before 1970, the question of whether to withhold treatment from such newborns was rarely contested. The ancient Spartan practice of exposing babies on hillsides and keeping those that survived had a contemporary counterpart in the common medical practice of simply not treating those born with major handicaps. As late as 1972, some doctors and parents thought it appropriate to withhold from children with Down syndrome or spina bifida surgery necessary for their survival. Noted pediatricians published articles in major medical journals reporting the withholding of life-saving treatment from infants with many kinds of disabilities. (2) Surveys of doctors showed that these practices were not exceptions. (3) In the mid-1970s, the emerging discipline of bioethics began to question the ethics and legality of these practices even as they were publicized. Courts became more willing to order treatment over parental wishes, though neither a uniform response nor clear guidelines emerged. (4) It took the Baby Doe controversy of 1981 and the federal Child Abuse Amendments (CAA) of 1984 to produce a rough consensus about the norms and practices that would govern this area. (5) Since passage of the CAA, ethical and legal controversy over parental authority to withhold treatment from handicapped or disabled newborns, although still featured in bioethics courses and texts, has largely ceased. Yet one aspect of the controversy was never directly resolved. Because the Baby Doe controversy had focused on infants with genetic and chromosomal anomalies, the extent to which the CAA norms might require changes in practices with very premature and low birth weight infants remained open, even though it was occasionally mentioned in articles. (6) As a result, physicians and hospitals that insisted on treating premature newborns over parental objections were vulnerable to tort actions by parents. In January 1998, a Houston jury awarded $43 million in damages to parents whose daughter, born at twenty-three weeks and weighing 614 grams, was resuscitated and initially treated without their consent, leading to a life with severe mental and physical impairments. Texas appellate courts eventually reversed that decision, but in the five-year interim, hospitals and physicians faced the prospect of huge damage awards if they sought to treat cases of extreme prematurity in accordance with CAA standards against the parents' wishes. This article reviews the controversy and assesses the extent to which parents should have the right to decide not to treat severely premature newborns. The Baby Doe Controversy The Baby Doe controversy, which played such a key role in clarifying norms and practices in this area, arose in 1981 in Bloomington, Indiana. Parents of a newborn child with Down Syndrome and a trachealesophageal fistula refused to consent to a standard operation that would enable the child to take food and water by mouth. The hospital and doctors sought approval from a family court to perform surgery against the parents' wishes. A probate court denied the request on the ground that the parents had the right to make the decision. The child's guardian ad litem appealed the case unsuccessfully to the Indiana and then to the United States Supreme Court. While the case was pending, it drew wide media coverage and the attention of right-to-life and disability rights groups. Before the United States Supreme Court could rule on the guardian's appeal, Baby Doe died. …