Pediatric oncology is fraught with difficult and emotionally troubling decisions for physicians and families—from the time a child is first diagnosed, during treatment, if the child relapses, and if death is inevitable. Although there is no ethical consensus about how physicians and families should collaborate in this process, popular ethical theories argue that the family should make the decisions. However, this theory does not always reflect clinical reality, explains Simon N. Whitney, M.D., J.D., of the Baylor College of Medicine, in a recent paper.
Dr. Whitney and colleagues describe an ethically justified, clinically applicable approach to decisionmaking in pediatric oncology. They distinguish decision priority from decision authority. The person (parent, child, or clinician) who first identifies a preferred choice exercises decisional priority. In contrast, decisional authority is a parental right and duty, in which a mature child may join. Because cure of a disease is the ultimate goal, the physician is in a better position to assume decisional priority when a child can probably be cured. Clinicians sometimes justifiably assume decisional priority when there is one best medical choice.
However, they should encourage parents (and children, when appropriate) to assume decisional priority when there are two or more clinically reasonable choices. In this circumstance, the family, with its deeper understanding of the child's nature and preferences, is better positioned to take the lead. This model integrates ethical theory with the concrete realities of clinical medicine as the family and clinician struggle to find the right choice for the child. The study was supported in part by the Agency for Healthcare Research and Quality (HS11289).
See "Decision making in pediatric oncology: Who should take the lead? The decisional priority in pediatric oncology model," by Dr. Whitney, Angela M. Ethier, M.S.N., R.N., Ernest Fruge, Ph.D., and others, in the January 1, 2006, Journal of Clinical Oncology 24(1), pp. 160-165.