Decision-Making for Children with Disabilities: Parental Discretion and Moral Ambiguity

We argue that medical decisions on behalf of children should be made with the welfare of the child as the primary interest, that parents should generally be allowed to determine which options optimize the interests of their child, and that those decisions should be formally challenged only when the parental decision places the child at substantial risk of a serious harm as compared to the option favored by the health-care provider. In situations where moral ambiguity exists and no possible solution could unequivocally be declared the right or good one, a parental decision favoring one or the other of the reasonable options should be supported. Parents should be provided with adequate time to consider information provided and weigh the various options presented. If parents find themselves unable to make a decision, we suggest several strategies for shared decision-making. Finally, we recommend setting time points for reassessment of the situation following each therapeutic change to allow reevaluation of whether the chosen path should be altered.