Care of the Dying Adolescent: Special Considerations

Abstract

More than 3000 adolescents in the United States die annually from the effects of chronic illness. Providing appropriate end-of-life care for these patients is particularly challenging because of several developmental, ethical, and legal considerations relevant to this age group. Developmental issues relate to the ways in which life-threatening illness alters the normal physical and psychological changes associated with adolescence, including attainment of independence, social skills, peer acceptance, and a healthy self-image. Ethical and legal issues arise from the fact that many terminally ill adolescents <18 years of age lack ordinary legal authority to make binding medical decisions (including discontinuation of their treatment), yet they meet functional criteria for having the competence to do so. In such situations, a broad medical, ethical, and legal consensus supports giving decisional authority to the minor patient. Even when full decisional authority is not appropriate, strong moral arguments exist for taking serious account of the young adolescent’s treatment preferences. In supporting the dying adolescent, an atmosphere promoting excellent communication and sound decision-making should be fostered as early as possible during preterminal care and maintained thereafter. Once palliative-care strategies become the clinical focus, psychosocial support sensitive to the adolescent’s developmental stage must be provided. Using these principles, clinicians can play a crucial role in helping the adolescent, in the face of death, to experience richness of life and the dignity of self-determination.