What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation

Authors

Katherine B. Grill, Neolth Inc
Jichuan Wang, Children’s National Hospital
Rachel K. Scott, Washington Hospital Center
Debra Benator, School of Medicine and Health Sciences
Lawrence J. D’Angelo, School of Medicine and Health Sciences
Maureen E. Lyon, School of Medicine and Health Sciences

Document Type

Journal Article

Publication Date

1-1-2021

Journal

American Journal of Hospice and Palliative Medicine

DOI

10.1177/1049909120988282

Keywords

African American; gender; health disparities; HIV/AIDS; palliative care; sexual minority

Abstract

© The Author(s) 2021. Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH). Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial. Findings: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. Conclusion: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.

APA Citation

Grill, K., Wang, J., Scott, R., Benator, D., D’Angelo, L., & Lyon, M. (2021). What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation. American Journal of Hospice and Palliative Medicine, (). http://dx.doi.org/10.1177/1049909120988282