An exploratory survey of end-of-life attitudes, beliefs, and experiences of adolescents with HIV/AIDS and their families.

Context: For youths with life-limiting conditions, little is known regarding families' understanding of their adolescent's wishes for end-of-life (EOL) care.

Objectives: To examine congruence in HIV positive adolescents and their families' thoughts about death and dying.

Methods: The Lyon Advance Care Planning Survey-Adolescent and Surrogate versions were administered within a randomized controlled trial. Participants (n=48) were medically stable adolescents aged 14-21 years with HIV/AIDS and their families. Congruence was measured by intraclass correlation coefficients (ICCs) for continuous variables and by kappa for ordinal or dichotomous responses.

Results: Adolescent participants were as follows: mean age 16.6 years (range 14-21); 37.5% males; 92% African American; 38% CD4 count <200; and viral load mean=32,079 copies/mL (range <400-91,863 copies/mL). Adolescent/family dyads agreed that it is important to complete an advance directive to let loved ones know their wishes (21/24 dyads), yet no dyads agreed an advance directive had been completed. Dyads endorsed incongruent thoughts about the adolescent being afraid of dying in pain (64%; congruent afraid=8 dyads, kappa=-0.0769) and being off life support machines (congruent important=9 dyads, ICC=-0.133, 95% confidence interval = -0.540, 0.302, P=0.721). Families' knowledge of teens' preferences for the timing of EOL conversations (early vs. late in course of illness) was poor (kappa=-0.1186). Adolescents (90%) wanted to talk about EOL issues before they entered the dying phase.

Conclusion: Although important areas of congruence emerged, equally important areas, such as the timing of these conversations and adolescents' EOL needs and wishes, are not known by their families. Families need help initiating conversations to assure that their adolescents' EOL wishes are known to them.