Disagreement About Withholding Treatment on the Basis of Disability

The parents of an infant born with arthrogryposis multiplex congenita (AMC) insist that she will not have a life worth living and ask the clinicians not to pursue life-preserving interventions and to discontinue feeding her. The neonatology team disagrees and worries that the parents are not making care choices in the patient’s best interests. This challenging case is analyzed from 3 unique perspectives. First, a scholar living with AMC shares her experience navigating this diagnosis from childhood to adulthood alongside her family. A neonatologist-ethicist argues for neonatologists to inform parents of their infant’s potential abilities as integral members of a family, as well as their expected impairments. Finally, ethicists explore the parents’ beliefs, risk of harm to the child, and the zone of parental discretion in the context of societal bias against people with disabilities. The case will challenge readers to consider how they may respond in situations in which clinicians and families may disagree about the treatment for a child with a complex disability.