Cultural lag, economic scarcity, and the technological quagmire of "Infant Doe".
The major purpose of this article is to explore the substantial disparity between access to resources provided at birth to a child with spina bifida--a so-called Baby Doe--and later access to resources needed to sustain that child throughout the life course. The author's organizing principle is the allocative paradoxes created by the clash of technology, scarcity, and demography. The study is based on an eight-year inquiry into the way life-saving medical decisions are made about children with spina bifida. This work focuses on the qualitative aspects of that inquiry. There is a societal need to debate health care rationing, to do much more systematic technology assessment, and to develop a much more consistently rational system of health care delivery.
Evans
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Department of Sociology, The University of Kansas, Lawrence, KS 66045, USA.
D000328:Adult; D001291:Attitude of Health Personnel; D020811:Biomedical Technology / Q000191:economics; D002648:Child; D003657:Decision Making / Q000941:ethics; D019988:Children with Disabilities; D005190:Family; D017048:Health Care Costs; D006282:Health Personnel / Q000523:psychology*; D006297:Health Services Accessibility / Q000941:ethics; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D007407:Interviews as Topic; D008020:Life Support Care / Q000941:ethics* / Q000331:legislation & jurisprudence; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D040841:Resource Allocation / Q000191:economics / Q000941:ethics*; D016414:Resuscitation Orders / Q000941:ethics; D016135:Spinal Dysraphism / Q000191:economics / Q000523:psychology / Q000628:therapy; D014481:United States; D028761:Withholding Treatment / Q000941:ethics / Q000331:legislation & jurisprudence