Is it safe? Talking to teens with HIV/AIDS about death and dying: a 3-month evaluation of Family Centered Advance Care (FACE) planning – anxiety, depression, quality of life

Maureen E Lyon¹, Patricia A Garvie², Linda Briggs³, Jianping He⁴, Robert Malow⁵, Lawrence J D’Angelo¹, Robert McCarter⁴

¹Children’s National Medical Center and George Washington School of Medicine and Health Sciences, Washington, District of Columbia; ²St Jude Children’s Research Hospital, Memphis, Tennessee; ³Gundersen Lutheran Medical Foundation, Inc., Madison, Wisconsin; ⁴Children’s Research Institute, Washington, District of Columbia; ⁵Florida International University, Miami, Florida

Purpose: To determine the safety of engaging HIV-positive (HIV+) adolescents in a Family Centered Advance Care (FACE) planning intervention.

Patients and methods: We conducted a 2-armed, randomized controlled clinical trial in 2 hospital-based outpatient clinics from 2006–2008 with HIV+ adolescents and their surrogates (n = 76). Three 60–90 minutes sessions were conducted weekly. FACE intervention groups received: Lyon FCACP Survey^©, the Respecting Choices^® interview, and completion of The Five Wishes^©. The Healthy Living Control (HLC) received: Developmental History, Healthy Tips, Future Planning (vocational, school or vocational rehabilitation). Three-month post-intervention outcomes were: completion of advance directive (Five Wishes^©); psychological adjustment (Beck Depression, Anxiety Inventories); quality of life (PedsQL™); and HIV symptoms (General Health Self-Assessment).

Results: Adolescents had a mean age, 16 years; 40% male; 92% African-American; 68% with perinatally acquired HIV, 29% had AIDS diagnosis. FACE participants completed advance directives more than controls, using time matched comparison (P < 0.001). Neither anxiety, nor depression, increased at clinically or statistically significant levels post-intervention. FACE adolescents maintained quality of life. FACE families perceived their adolescents as worsening in their school (P = 0.018) and emotional (P = 0.029) quality of life at 3 months, compared with controls.

Conclusions: Participating in advance care planning did not unduly distress HIV+ adolescents.

Keywords: adolescents, advance care planning, communication, decision-making, family intervention, HIV/AIDS