A Place Called LIFE: Exploring the Advance Care Planning of African-American PACE Enrollees

Abstract

The goals of this exploratory study were (a) to describe, among African-American PACE (Program of All-Inclusive Care for the Elderly) enrollees, verbalized preferences for end-of-life care as compared to preferences for care as documented in their medical record and (b) to explore the personal values that inform end-of-life decision making among these frail elders. Medical record review and semi-structured interviews generated descriptive and qualitative data for 18 African-American enrollees in a PACE program located in a large eastern city of the United States. Review of verbalized and documented preferences for end-of-life care among participants indicated that most preferred life-sustaining treatments. In addition, findings suggest that these PACE enrollees had limited information or understanding of the interventions and terminology associated with advance directives. Content analysis of interviews indicated that end-of-life decision making was influenced by the desire to maintain usual activities of daily living; to avoid burdening caregivers; and to remain in control of personal health care. Furthermore, these African-American elders relied on faith in God as central to medical decision making, believing ultimately that God controls the end of life. This research may enhance the ability of social workers, in collaboration with other members of PACE or similar interdisciplinary teams, to understand the values and attitudes associated with the preferences of older African Americans for care at the end of life. These findings suggest future research is needed to ensure advance care planning acknowledges and responds to the values and preferences of African-American PACE enrollees for the end of life.

Rewards and unique challenges faced by African-American custodial grandmothers: the importance of future planning

“…Specifically, custodial grandmothers reported having to put self on hold and concern regarding no identified substitute caregiver. Consistent with Nath et al (2008) about religiosity/spirituality and advance care planning, our quantitative findings suggest that although custodial caregivers endorsed a strong sense of religiosity/ spirituality and reliance on God in future care planning for their grandchildren, there was no relation with advance care planning for themselves (see Table 3). …”

“…Additionally, these family caregivers have worries about 'having no one left to provide care for me when I am in need' (Anderson & Turner, 2010). AfricanAmerican caregivers also expressed a strong desire of not wanting to 'burden others' when they are in need of care (Nath, Hirschman, Lewis, & Strumpf, 2008).…”

“…AfricanAmericans tend to rely on their faith in God as central to medical decision-making, believing ultimately that God controls the end-of-life (Nath et al, 2008;Waters, 2001). Crawley et al (2000) proposed that African-Americans may not opt for palliative care due to their values about enduring pain and suffering that conflict with their spiritual view of death and the goals of palliative care (i.e., relieving physical pain).…”

Understanding End-of-Life Decision-Making Terminology Among African American Older Adults

“…Among these, the following factors are noteworthy: familial and individual belief systems (Campbell & Ash, 2007; Mazanec, Daly, & Townsend, 2010), socialization and culture (Bullock, 2011; Johnson, Kuchibhatla, & Tulsky, 2009), spirituality and/or religion (Carr, 2012; Nath, Hirschman, Lewis, & Strumpf, 2008), and events in history (e.g., the Tuskegee Syphilis Study and Henrietta "HeLa Cells" Lacks Story) that contribute to mistrust of U.S. health care systems (Campbell & Ash, 2007; Mazanec et al, 2010). These factors make it increasingly important for health care providers to approach all patients as individuals, without assumptions or judgment regarding their care choices (Institute of Medicine [IOM], 2015).…”

Conversations about End of Life: Perspectives of Nursing Home Residents, Family, and Staff

“…8 When wishes were recorded, documents often were not in agreement with the resident's verbal wishes. 9 Fosse and colleagues (2014) 10 found in their review of EOL experiences that residents wanted to be involved in EOL related choices, but family and staff did not always recognize resident preferences or ability to consent to preferences. 10 Research indicates quality of care in NHs is suboptimal, with deficits in staff training, symptom management, treating residents with dignity and respect, and communication.…”