FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity

Abstract

Context. No prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS. Objective. To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record. Methods. Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision-makers (N ¼ 233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or healthy living control (conversations about developmental/relationship history and nutrition). Results. Patients (n ¼ 223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months after intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (P < 0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately seven times greater than controls (adjusted odds ratio ¼ 6.58, 95% CI: 3.21e13.51, P < 0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (P < 0.0001). Conclusions. The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, DC, providing health equity in ACP, which can inform best practices.

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…After searching almost fourthly-thousand citations, 284 articles were included in our study, of which 147 were manuscripts that directly addressed end-of-life and hospice care, palliative care, as well as advance care planning and directives that include non-Hispanic Blacks. 4 …”

“…48 Completion of advance care planning and directives among non-Hispanic blacks with serious illnesses: Additionally, similar racial gaps have been observed among individuals with serious illnesses, indicating that non-Hispanic Whites with a serious illness are more likely than their non-Hispanic Black counterparts to have an advance directive. 30,79,117 Despite being more likely to be hospitalized due to advanced cancer with a poor prognosis, non-Hispanic Blacks have very low levels of advance care planning. 90 Using death certificates of a nationally representative sample of adults with non-traumatic causes of death who had received end-of-life care (whether in a hospital or nursing home, or via home-based medical service), researchers found that 51% of non-Hispanic Blacks and 73% of Whites had a durable power of attorney or living will.…”

“… 237 A recent study conducted among HIV positive individuals shows that only 12.5% of non-Hispanic Blacks had an advance care directive. 30 Another recent study conducted by Stein and colleagues (2020) revealed that the LGBT patients and their families are more likely than those who are not LGBT to receive discriminatory care from hospice personnel, which leads to delay or avoidance of hospice or palliative care. 10 Stein and Colleagues surveyed 865 hospice and palliative care providers, including social workers, nurses, chaplains, and physicians.…”

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

“…36 Study participants trusted their clinicians and were willing to participate in a trial of family-centered advance care planning which found AA-PLWH were willing to limit treatment in some situations 37 and agreed to document their advance care plans in their electronic health record. 38 This study had limitations. The cross-sectional design does not allow for statements about causality.…”

Chronic Pain, Functional Status, and Life Satisfaction Are Associated With Patients Living With HIV Discussing Advance Care Planning With Their Family or Friends

“…17 Prior studies have indicated that interventions to discuss ACP with PLWHAs leads to improved ACP completion and documentation. 22 Data from the SPIRIT trial, an ACP intervention in dialysis patients, suggest that the ACP intervention led to increased goal-concordant decision-making, surrogate decisionmaking confidence, and reduced decisional conflict. In addition, the intervention led to reduced surrogate bereavement depressive symptoms for African American patients (but not whites).…”