From Barriers to Assets: Rethinking factors impacting advance care planning for African Americans

Abstract

Qualitative study with health disparities experts (n = 5), community members (n = 9), and seriously ill African American patients and caregivers (n = 11). Using template analysis, interviews were coded to identify intrapersonal, interpersonal, and systems-level themes in accordance with a social ecological framework.ResultParticipants identified seven primary factors that influence ACP for African Americans: religion and spirituality; trust and mistrust; family relationships and experiences; patient-clinician relationships; prognostic communication, care preferences, and preparation and control. These influences echo those described in the existing literature; however, our data highlight consistent differences by group in the degree to which these factors positively or negatively affect ACP. Expert participants reinforced common themes from the literature, for example, that African Americans were not interested in prognostic information because of mistrust and religion. Seriously ill patients were more likely to express trust in their clinicians and to desire prognostic communication; they and community members expressed a desire to prepare for and control the end of life. Religious belief did not appear to negate these desires.Significance of resultsThe literature on ACP in African Americans may not accurately reflect the experience of seriously ill African Americans. What are commonly understood as barriers to ACP may in fact not be. We propose reframing stereotypical barriers to ACP, such as religion and spirituality, or family, as cultural assets that should be engaged to enhance ACP. Although further research can inform best practices for engaging African American patients in ACP, findings suggest that respectful, rapport-building communication may facilitate ACP. Clinicians are encouraged to engage in early ACP using respectful and rapport building communication practices, including open-ended questions.

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

“…(2019). 20 5 health disparities experts; 9 community members, and 11 seriously ill African American patients and their caregivers…”

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

“…40,41 Consistent with a qualitative study of early ACP for African-Americans, FACE ACP demonstrated that respectful and rapport building communication, which treated the family as an asset, successfully engaged African-Americans living with a serious illness in early ACP. 43 There is a debate about whether the ultimate goal of ACP should be between patient preferences and the care actually received; and whether or not this outcome is measurable. 44,45 This may be particularly salient for PLWHs because the trajectory to death is less predictable and may trigger hospital admissions for potentially life-extending interventions, even for those indicating a preference for less-aggressive HIVspecific care.…”

Will You Hear Me? Have You Heard Me? Do You See Me? Adding Cultural Humility to Resource Allocation and Priority Setting Discussions in the Care of African American Patients With COVID-19

“…A recent qualitative study evaluating views of health disparities experts, community members, and African American patients and caregivers facing serious illness found that patients and caregivers trusted their medical teams; wanted prognostic information communication; and expressed a desire to prepare for the end of life. 7 Health disparities experts echoed themes of mistrust, spirituality, religiosity, desire to limit prognostication, and fatalism as barriers to effective advance care planning. These varying points of view call our attention to the pitfall of leaning too heavily on cultural competency as opposed to leading with cultural humility.…”

“…Depending on cultural competence for effective communication is not enough for healthcare providers to rely on when attempting to have meaningful communication. A recent qualitative study evaluating views of health disparities experts, community members, and African American patients and care-givers facing serious illness found that patients and caregivers trusted their medical teams; wanted prognostic information communication; and expressed a desire to prepare for the end of life 7 . Health disparities experts echoed themes of mistrust, spirituality, religiosity, desire to limit prognostication, and fatalism as barriers to effective advance care planning.…”