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

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.

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

“…With respect to timing, PLWH in our trial overwhelmingly prefer to engage in ACP conversations while healthy (64%) or when first diagnosed (7%), rather than when first ill from a life-threatening illness (3%), or when hospitalized or if dying (5%). 49 Thus, ACP could be offered to all PLWH as a routine and standard part of the continuum of care, which the patient can then decide to utilize or not.…”

“…Settings for RC implementation in the United States have included outpatient-hospital-based clinics, 50,51 chronic disease management programs (heart failure, 52 cancer 53 ), nursing homes [54][55][56] and community settings. 57,58 Although 84% of patients in this trial thought the physician was the best person to initiate end-of-life decisions, 49 facilitators have typically not been physicians due to time constraints. Physicians are an important part of the ACP team, supporting the conversations and decision-aids; and answering patient questions, following the completion of ACP.…”

How does ethnicity affect presence of advance care planning in care records for individuals with advanced disease? A mixed-methods systematic review

“…Fifteen papers were included in the primary outcome measure analysis [ 15 , 44 , 47 , 49 , 51 , 53 , 56 , 57 , 59 , 62 , 64 - 66 , 68 , 73 ]. Only one paper came from outside of the USA (Kenya [ 73 ]), and no papers were located from the UK nor wider European countries.…”

“…Latino patients who did not have EOL discussions were the least likely to complete DNR orders Based on multiple logistic regression models, the best fitting model (based on minimum AIC) included the main and interactive effects of Latino ethnicity and EOL discussions No significant difference in rate of EOL conversations between Latino and White patients ( 34% vs. 42%, p = .349) H Burgio 2016 [ 53 ] USA – Birmingham, Alabama Deceased patient’s medical records DNR order Advanced directive Black and African American (34.5%) White (65.3%) Black and African Americans were less likely than White patients to have a DNR order (odds ratio = 0.67 (0.55,0.84) p = 0.004), or an advanced directive (odds ratio = 0.71 (0.54,0.93) p = 0.023). In the multi-variable analyses controlling for other variables thought to be potentially related to the end points, racial differences remained significant M Garrido 2014 [ 56 ] USA – Boston, Massachusetts Patient self-report (structured interview) DNR order White (72.1%) Black and African American (15.3%) Hispanic (12.5%) Significantly more White patients (45%) reported having a DNR order than Black and African American or Hispanic patients (25% and 20% respectively: p < .001) M Grill 2021 [ 57 ] USA – Washington Patient self-report (The Lyon Family Centered ACP Survey-Patient Version Revised) Advanced directive Healthcare Power of Attorney African American (86.1%) Non-African-American (11.2%) 36% of non-African Americans had completed advanced directives, compared to 12% of African Americans. 10 (40%) non-African Americans had written down thoughts about future care plans, in contrast with 58 (30.2%) African Americans M Kirtane 2018 [ 59 ] USA – Washington Electronic health records and death certificates Living will Healthcare power of attorney White (84.2%) Black and African American (4.8%) Asian (6.4%) Pacific (0.5%) Hispanic (1.7%) Minority other (2.3%) ...…”

“…Of the thirteen papers finding statistically significant ethnic differences in the presence of legal ACP, four were rated High Weight of Evidence [ 44 , 47 , 49 , 51 ]. The remaining nine were all rated Medium Weight of Evidence [ 15 , 53 , 56 , 57 , 59 , 62 , 65 , 66 , 68 ]. The two studies that reported no significant differences were also rated Medium Weight of Evidence [ 64 , 73 ].…”