title: Children should be seen and heard. Chronically ill children should have a voice in treatment decisions.
abstract: Traditionally, sick children have obeyed orders--the doctor's orders, their parents' orders. Father (mother, doctor, nurse) knows best. But indications are that in the future, chronically ill children will have some say in their own treatment decisions. And although few healthcare facilities today have any policies in place to ensure such participation, they may face increasing pressure to implement such policies. Both the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and the American Academy of Pediatrics recommend that children actively participate in the consent-assent-dissent process for healthcare decisions. Children's participation need not be total or complete; it may involve only selected aspects. Participation will (1) increase their ownership of the decision and encourage them to obtain the necessary follow-up care, (2) increase their ability to make such decisions in the future, and (3) perhaps make healthcare less threatening and more attractive to them as future healthcare consumers. Providers could encourage a cautious, gradual increase in participation by chronically ill children and adolescents. It should start by involving them in concrete tasks (like setting dates and times) and lead to active negotiation with parents and healthcare workers regarding treatment.
authors: University of Pennsylvania, Philadelphia.
authors: J A
authors: JA
authors: Deatrick
authors: B C
authors: BC
authors: Woodring
authors: T L
authors: TL
authors: Tollefson
mesh_terms: D000293:Adolescent; D002648:Child; D002651:Child Advocacy; D002675:Child, Preschool; D002908:Chronic Disease / Q000628:therapy*; D004991:Ethics, Institutional; D005190:Family; D006801:Humans; D033282:Parental Consent; D010358:Patient Participation; D014481:United States