Who Will Speak for Me? Disparities in Palliative Care Research with “Unbefriended” Adolescents Living with HIV/AIDS

Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. Results: Between July 2010 and June 2014, 366 adolescents aged 14 to 21 years with HIV/AIDS were approached for participation. From among 125 ineligible adolescents living with HIV/AIDS, 62 (50%) were ineligible because they could not identify a surrogate decision-maker they trusted enough to make end-of-life decisions for them, if they were unable to do so for themselves. Conclusion: Healthy People 2020's goal of increasing the proportion of adolescents connected to a trusted adult with whom they can talk about serious problems is unmet among adolescents living with a serious illness. Discussion: Ethical concerns for justice, dignity, and access to health services are raised as adolescents who most need support in future medical decision making are least likely to have this support.