Reducing Disparities in the Quality of Palliative Care for Older African Americans through Improved Advance Care Planning: Study Design and Protocol

Abstract

Advance care planning (ACP) improves end-of-life care for patients and their caregivers. However, only one-third of adults have participated in ACP and rates are substantially lower among African Americans than among whites. Importantly, ACP improves many domains of care where there are racial disparities in outcomes, including receipt of goal-concordant care, hospice use, and provider communication. Yet, few studies have examined the effectiveness of ACP interventions among African Americans. The objectives of reducing disparities in the quality of palliative care for older African Americans through improved advance care planning (EQUAL ACP) are as follows: to compare the effectiveness of two interventions in (1) increasing ACP among African Americans and whites and (2) reducing racial disparities in both ACP and end-of-life care; and to examine whether racial concordance of the interventionist and patient is associated with ACP. EQUAL ACP is a longitudinal, multisite, cluster randomized trial and a qualitative study describing the ACP experience of participants. The study will include 800 adults ‡65 years of age (half African American and half white) from 10 primary care clinics in the South. Eligible patients have a serious illness (advanced cancer, heart failure, lung disease, etc.), disability in activities of daily living, or recent hospitalization. Patients are followed for one year and participate in either a patient-guided, self-management ACP approach, including a Five Wishes form or structured ACP with Respecting Choices First Steps. The primary outcome is formal or informal ACP-completion of advance directives, documented discussions with clinicians, and other written or verbal communication with surrogate decision makers about care preferences. Secondary outcomes assessed through after-death interviews with surrogates of patients who die during the study include receipt of goal-concordant care, health services use in the last year of life, and satisfaction with care. EQUAL ACP is the first large study to assess which strategies are most effective at both increasing rates of ACP and promoting equitable palliative care outcomes for seriously ill African Americans.

Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review

“…Furthermore, decisions about which ACP stakeholder/pillar to focus on, which populations to include, which intervention to use, and which outcomes to assess will require a tailored approach based on the needs of the local environment. That said, given the current heterogeneity of ACP outcomes, future research should consider using some standardized outcomes so that trial findings can be compared, as some studies are attempting 154,155 . Finally, pragmatic trials measuring implementation strategies in real‐world settings are needed, and several are underway 152,154‐156 .…”

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 …”

“…280 Receiving palliative care for people with serious illness, and hospice services for people approaching the end of life is no exception. 11 , 13 , 18 , 23 , 24 , 37 , 38 , 44 , 45 , 47 , 50 , 52 , 54 , 58 , 71 , 74 , 75 , 83 , 91 , 93 , 116 , 141 , 142 , 173 , 181 , 188 , 281 It is urgent that we understand and eliminate both disparities in serious illness care and disparities in end-of-life care. The story about race and palliative and hospice care in United States is very much the same story of racism in health care.…”

Spiritual care practices in hospices in the Western Cape, South Africa: The challenge of diversity

“…The responses of our participants enable us to add to the discussions raised by the few studies in the global South [15,27,28]. The issue of diversity in spiritual care is now being discussed in diversifying countries like, for example, the USA [29,30,31] and in other African contexts (32,33,34]. There are similarities between our ndings and those in other diverse contexts; the particular South African history, though, does create a political context which is probably unique [35].…”