Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families

Abstract

Objectives: The purpose of this research was to test the effectiveness of a model of family/adolescent-centered advance care planning for adolescents living with HIV and their families for increasing congruence and quality of communication while decreasing decisional conflict.

Patients and methods: Ours was a 2-group, randomized, controlled trial in 2 hospital-based outpatient clinics in Washington and Memphis from 2006 to 2008. Participants (N = 38 dyads) included medically stable adolescents aged 14 to 21 years with HIV/AIDS and surrogates/families aged > or =21 years. Three 60- to 90-minute sessions were conducted 1 week apart via a semistructured family interview with a trained/certified interviewer. Each session encompassed, respectively: (1) Lyon Advance Care Planning Survey; (2) Respecting Choices interview; and (3) Five Wishes. Controls received (1) developmental history, (2) safety tips, and (3) future plans. Family congruence was measured by the Statement of Treatment Preferences and adolescent decisional conflict by the Decisional Conflict Scale, immediately after session 2. Communication was measured by the Quality of Participant-Interviewer Communication Scale after each session.

Results: Adolescent demographics were as follows: mean age was 16 years; 40% were boys; 92% were black; HIV transmission rate was 68% perinatal and 32% sexually acquired; 42% were asymptomatic; 29% were symptomatic; and 29% had a diagnosis of AIDS. Significantly increased congruence for testing the difference of the 2 kappa values for the 2 conditions was observed for intervention versus control dyads. Intervention adolescents reported feeling significantly better informed about end-of-life decisions. Intervention adolescents and all of the surrogates were more likely to feel that their attitudes and wishes were known by the interviewer over time. Intervention families, significantly more so than controls, rated the overall quality of discussion as very good to excellent.

Conclusions: Family-centered advance care planning by trained facilitators increased congruence in adolescent/surrogate preferences for end-of-life care, decreased decisional conflict, and enhanced communication quality. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.