Permanently Locked-in Syndrome in the Neurologically Impaired Neonate: Report of a Case of Werdnig-Hoffman Disease
Echenberg, Robert J.
Journal of Clinical Ethics. 1992 Fall; 3(3): 206-208.
Echenberg, a physician and the chairman of a PEC (perinatal ethics committee) recounts a difficult case of an infant with congenital Werdnig-Hoffman disease, which is characterized by a severe, early-onset form of spinal muscular atrophy, secondary to progressive neurologic degeneration. The two-and-one-half-month-old girl was paralyzed and respirator dependent, but apparently mentally intact and aware. Her parents and other family members tried to avoid serious involvement in the case. The physicians caring for her were resigned to the futility of further treatment, but uncertain how to proceed. The infant's nurses, many of whom had bonded with the child, were strongly divided as to what course of action would be in her best interests, and who should make decisions about continuation or termination of life support. Echenberg summarizes the PEC meeting which was convened about this case, and reviews the issues involved. (KIE abstract)
Allowing to Die; Attitudes; Caring; Case Studies; Clinical Ethics; Clinical Ethics Committees; Congenital Disorders; Disease; Ethics; Ethics Committees; Family Members; Futility; Hospitals; Infants; Intensive Care Units; Life; Newborns; Nurses; Pain; Paralysis; Parents; Patient Care; Patient Care Team; Physicians; Prolongation of Life; Suffering; Treatment Refusal; Uncertainty;
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Truog, Robert D. (1992)In "Permanently locked-in syndrome in the neurologically impaired neonate," Robert J. Echenberg provides a moving account of how an ethics committee can provide guidance in a difficult and disturbing clinical situation. ...