THE PSYCHOLOGICAL IMPACT OF DISABILITY AND ILLNESS ON MEDICAL TREATMENT DECISION-MAKING

The Psychological Impact of Disability and Illness on Medical Treatment Decision making As the world goes through remarkably rapid technological and demographic changes against a backdrop of increasingly scarce material resources, the issue of how life and death decisions are made about persons with disabilities takes on added relevance. With health care rationing more discernible in many settings, laws designed to protect the rights of citizens with disabilities – some of whom require great material and technological resources to survive – may be all that stands between the provision of medical care for these persons and a reemergence of some of the more untoward aspects of the eugenics movement. One of the most important laws pertaining to the relative place certain disabled persons will have in what may be called “the hierarchy of expendability” is the Child Abuse Amendments of 1984, or, as these amendments are sometimes called, the “Baby Doe Amendments.”(1) This article will explore the psychosocial impact of disability on treatment/non treatment decisions about “Baby Does” made by physicians and nurses who are known to have extensive experience in such decision making, as well as the role of parents of children with spina bifida cystica who have made such decisions. Before discussing the study that provided the data base for this article, it will be helpful to explore briefly the legal antecedents of the “Baby Doe Amendments,” the amendments themselves, and some of the social and legal controversies that have surrounded these amendments. Infanticide has occurred in all periods of human history.(2) In light of the massive resources of our society and a presumption that the Bill of Rights of the U.S. Constitution protects any citizen’s life, the traditional sense was that even if infanticide happened in “more primitive societies,” it couldn’t happen here. Despite the view that infanticide can’t happen here, a peripheral familiarity with the medical advances of the first two-thirds of the twentieth century increasingly left citizens with an intuitive, if not anecdotal, sense that there were some babies with life-threatening conditions who could be saved, but who were not receiving treatment because of their projected life prospects. Indeed, at some level, we probably all knew that gross physical and/or mental deficits were being used to substantiate the act of “letting the children go.” Such decisions tacitly raised the issue of a breach of the child’s civil rights, but the issue remained a silent one because there is historically established deference to parental privacy in these matters, because the topic is distasteful, and because many citizens were un-aware of the remarkable extent to which technological developments were permitting doctors “to play God” in the nursery. It was a classic case of society’s technological capacities outstripping the citizenry’s moral and practical abilities to accommodate humanely to the resulting ethical conundra – a phenomenon the sociologist William Ogburn called “cultural lag.”(3) By 1973 the issue of infanticide came to the forefront of the medical literature when Raymond S. Duff and A.G.S. Campbell published their findings regarding the withholding of treatment from infants in a special care nursery at Yale-New Haven Hospital. The study showed that withdrawal or withholding of treatment resulted in the deaths of forty-three infants, accounting for 14% of the deaths in that nursery during the period of study.(4) By 1977 Shaw had published a survey of pediatric surgeons and pediatricians illustrating that there was widespread acceptance of the practice of withholding treatment from certain disabled children.(5) By 1982, the issue of withholding treatment from children with disabilities entered a litigious phase. On April 9, 1982, a baby known as “Infant Doe” was born with Down syndrome, and an esophageal atresia with associated tracheoesophageal fistula.