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January 13, 1984

The Rights of Infants With Down's Syndrome

Author Affiliations

From the Departments of Pediatrics (Dr Smith), and Social Services (Ms Davies), Illinois Masonic Medical Center; the Departments of Pediatrics (Dr Diamond) and Neonatology (Dr Anderson), Loyola University; the School of Law, Northwestern University (Dr Rosenblum); the Departments of Obstetrics (Dr Amarose) and Developmental Psychology (Dr Spiker), University of Chicago; the Department of Pediatrics, University of Illinois (Dr Rosenthal), Chicago; the Department of Genetics, University of Paris (Dr Lejeune); and the Medical Ethics Department, University of Wisconsin, Madison (Dr Fost).

JAMA. 1984;251(2):229. doi:10.1001/jama.1984.03340260033022

THERE are infants—some with Down's syndrome—who are born dying, in the sense that they are afflicted with an illness for which there is no definitive life-saving treatment, and they will inevitably die as neonates. The question is how they will live while dying. Conflicts may arise in these cases over the physician's obligation toward such patients. The physician clearly must provide comfort and relief of pain, but such arduous interventions as surgery and resuscitative therapy, which would merely prolong or aggravate the dying process, need not be undertaken. There are other infants who can clearly benefit from technically complex and costly interventions. Distinguishing the first group from the second is often difficult, and risk-benefit equations have to be weighed. In the case of infants with Down's syndrome, intelligent decisions can only be made by an attending physician knowledgeable about Down's syndrome and by parents who are well instructed about the