Who Will Speak for Me? Disparities in Palliative Care Research with "unbefriended" Adolescents Living with HIV/AIDS

Who Will Speak for Me? Disparities in Palliative Care Research with "unbefriended" Adolescents Living with HIV/AIDS

Lee BC; Houston PE; Rana SR; Kimmel AL; D'Angelo LJ; Lyon ME

Journal Of Palliative Medicine

2017

Human Immunodeficiency Virus; Palliative Therapy; Stigma; Adolescent; Adult; City; Clinical Trial; Controlled Study; Female; Human; Human Dignity; Justice; Major Clinical Study; Male; Medical Decision Making; Mortality; Multicenter Study; Nonhuman; Pediatric Hospital; Randomized Controlled Trial; Single Blind Procedure

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.

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

December 2017 List