Involvement of adolescents in decision making for heart transplants

Every year, hundreds of children and adolescents are faced with the need for heart transplantation to survive end-stage cardiac disease. This experience extends far beyond the surgical intervention, for it begins with a waiting period that may involve invasive and distressing interventions, and proceeds through a lifetime of lifestyle changes and complicated ongoing medical management. Adolescents may wish to forgo heart transplantation, even at the expense of their own lives. Such refusals leave patients, parents, and healthcare professionals grappling with complex ethical issues. It is incumbent upon professionals to allow adolescents a role in making this important decision; this requires that nurses understand ethical concepts including autonomy, competence, and assent. Because autonomy develops over time, an evaluation of the adolescent's maturity and competence is necessary. By incorporating the concepts of child development and measures of competence developed to govern pediatric involvement in research, a structured and ethically sound method for involving adolescents in this process can be put into practice.