What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation. (June 2021)

• Record Type: Journal Article
• Authors: Grill, Katherine B.; Wang, Jichuan; Scott, Rachel K.; Benator, Debra; D'Angelo, Lawrence J.; Lyon, Maureen E.
• Is Part Of: American journal of hospice & palliative care. Volume 38:Number 6(2021)
• Page Start: 610
• Page End: 617
• Publication Date: 2021-06
• Subjects: HIV/AIDS -- palliative care -- African American -- sexual minority -- gender -- health disparities; Hospice care -- Periodicals; Palliative treatment -- Periodicals; 362.175
• DOI: 10.1177/1049909120988282
• Languages: English
• ISSNs: 1049-9091

Abstract

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.