The Changing Context of Neonatal Decision Making: are the Consumerist and Disability Rights Movements Having an Effect?

Abstract

In Great Britain in the 1960s and 1970s, a physician (Lorber, 1971) developed criteria that would exclude from treatment many babies born with spina bifida (“open spine”) based on what he perceived to be a poor projected quality of life. In the US, the parameters of the modern debate developed around the case of “Baby Doe,” a child born in the early 1980s with Down syndrome and duodenal atresia, an intestinal blockage. Without surgery to correct the blockage, the baby would not survive. Because the infant also had Down syndrome, which typically includes some degree of intellectual disability, the parents decided not to consent to the surgery. The parents’ decision was met with outrage by disability advocacy groups, as was a similar decision a few years later to forego surgery to repair a myelomeningocele (spina bifida) in the case of “Baby Jane Doe.” The publicity surrounding these and other non-treatment decisions resulted in the US in the passage of the Child Abuse Amendments of 1984, largely through the efforts of then Surgeon General C. Everett Koop. This legislation effectively mandated universal treatment of newborns with disabilities. However, several court cases since have resulted in rulings allowing parents to discontinue life support based on quality-of-life issues, resulting in the establishment of state standards in addition to the federal ones (Clark, 1994). Still, the norm in the case of Down syndrome and spina bifida, two of the most common childhood impairments apparent at birth, continues to support the treatment of virtually all children born with these conditions. As a result, most post-natal decision making today involves infants with other, often more serious, impairments that result from perinatal complications or from extreme prematurity. Even in those cases, a bias toward treatment seems to prevail (Levin, 1990).

Citation

Benjamin Darling, R. (2007), "The Changing Context of Neonatal Decision Making: are the Consumerist and Disability Rights Movements Having an Effect?", Katz Rothman, B., Mitchell Armstrong, E. and Tiger, R. (Ed.) Bioethical Issues, Sociological Perspectives (Advances in Medical Sociology, Vol. 9), Emerald Group Publishing Limited, Leeds, pp. 65-84. https://doi.org/10.1016/S1057-6290(07)09003-1