Values Important to Terminally Ill African American Older Adults in Receiving Hospice Care

Abstract

While racial disparity in the use of hospice care by older African Americans is widely acknowledged, little is known about the values that they consider as important in receiving health care services along with direct experiences with having these values respected by hospice care providers. Using individual, face-to-face interviews, data were collected directly from 28 African American hospice patients about their experiences in hospice care. Content analysis was used to identify and categorize themes from multiple readings of the qualitative data. Resulting themes included: dying at home, open communications, independent decision-making, autonomy in daily life, unwillingness to be a burden, and relationships. Through the initial assessment, value preferences can be explored and then shared with hospice team members to ensure that services are provided in such a way that their values and preferences are respected.

Family Caregiving and the Site of Care: Four Narratives About End-of-Life Care for Individuals with Dementia

“…The race of all four of these families was White (non-Hispanic); however, research indicates large differences in hospice behaviors among African American families-i.e., they are less likely to use hospice (Noh, 2014;Washington, Bickel-Swenson, & Stephens, 2008). Barriers to cultural awareness in hospice have previously been identified (Reese & Beckwith, 2014).…”

Cross-Cultural Experiences of Hospice and Palliative Care Services: A Thematic Analysis

“…Both patients and family members discussed utilizing many sources of information to understand their illness. Patients of African American, Spanish-speaking, East Asian, and native Australian and Hawaiian backgrounds believed their healthcare providers were effective sources of medical information (Dembinsky, 2014; Dillon & Basu, 2016; Kataoka-Yahiro, McFarlane, Kealoha, & Sy, 2016; Noh, 2014; Thienprayoon et al., 2016). Family members from these backgrounds reported feeling that hospice staff were forthcoming and helped them anticipate their family member’s failing health (Kidd, Black, Blundell, & Peni, 2018).…”

“…Non-western cultural groups, when defined as those peoples from Africa, Asia, Australia, Latin America, and the Middle East, experience particular disparity compared to patients from Western cultural backgrounds, including those from Western Europe and the United States. Those from non-Western and minority cultural backgrounds use hospice less frequently, and when they do utilize hospice services, they report lower satisfaction (Dembinsky, 2014; Dillon & Basu, 2016; Frey et al., 2013; Noh, 2014; Nuñez, Holland, Beckman, Kirkendall, & Luna, 2017). This disparity is likely the result of a number of barriers to end-of-life care including poor health literacy, decreased financial means, and the lack of awareness of end-of-life services (Noh, 2014; Nuñez et al., 2017).…”

“…Those from non-Western and minority cultural backgrounds use hospice less frequently, and when they do utilize hospice services, they report lower satisfaction (Dembinsky, 2014; Dillon & Basu, 2016; Frey et al., 2013; Noh, 2014; Nuñez, Holland, Beckman, Kirkendall, & Luna, 2017). This disparity is likely the result of a number of barriers to end-of-life care including poor health literacy, decreased financial means, and the lack of awareness of end-of-life services (Noh, 2014; Nuñez et al., 2017).…”

Informal Caregivers’ Perceptions of Needs From Hospice Providers: An Integrative Review

“…15 A team of hospice providers, including physicians, nurses, social workers, home health aides, and chaplains, work together to meet the needs of the patient and ICs. 12,15 While much research exists offering patients' perspectives of hospice services [16][17][18] and health-care providers' perspectives of IC needs, 16,19,20 the ICs' voices need to be heard. This becomes evident when reviewing studies comparing IC and hospice provider perspectives of hospice care and noting the similar yet strikingly unique lens through which each party views the caregiving experience.…”