Terminally Ill Older African Americans' Cultural and Value-Based Preferences in Receiving Care At the End of Life

Purpose: Racial disparities in the use of hospice care have widely been recognized in previous studies. Possible barriers to African Americans’ enrollment in hospice care include those that are cultural and value-based in nature. Though previous studies provide insight into what cultural preferences, if not accommodated by hospice care providers, might prevent this group from receiving such service, little has examined this from the perspective of terminally ill older African Americans who were receiving hospice care at the time of the studies. This study aims to explore cultural and value-based preference these individuals have for their receipt of care and their perceptions of the congruence between their preferences and hospice service received.

Methods: A purposive sample was gathered via hospice agencies based on four criteria: (1) currently receiving hospice care, (2) 50 years of age or older, (3) African American, and (4) deemed by their nurse, social worker or chaplain as mentally competent to participate. In-depth, face to face interviews were conducted with 28 respondents (14 females and 14 males, age ranging from 50 to 101 with a mean of 69) using a semi-structured survey. Each interview was audiotaped and transcribed. Data from the transcripts were analyzed using qualitative content analysis (Hsieh & Shannon, 2005) to search for themes across the interviews. Three researchers independently read and coded transcripts, compared the coding and, after multiple discussions about any discrepancy, reached full consensus on the coding results.

Results: Themes that arose from the content analysis are: 1) dying at home, 2) independent decision-making, 3) autonomy in daily life, 4) unwillingness to be a burden to their loved ones, 5) open communication with health care providers, 6) receipt of social support, 7) respectful and caring attitude from healthcare providers, and 8) dependability of healthcare providers. Some respondents expressed dissatisfactions with the level of open communication with, and dependability of, their hospice care workers; however, congruence between the respondents’ preferences and hospice service received was seen in all of the other themes.

Implications: The findings of this study have important implications for social work practice in hospice care settings. Hospice social workers may assess patients’ preferences in such areas as reported in this study to work not only with the patient but also with hospice team members to ensure that services are provided in a way the patient’s preferences are met. Interdisciplinary team meetings could serve as a forum for discussion of such preferences and how to translate them into respectful care for patients. A focus on respecting the cultural and value-based preferences of terminally ill African Americans may enhance the experience of dying with hospice care services for these individuals and their family members and expand the use of hospice care services by African Americans.