A Community–Developed, Culturally–Based Palliative Care Program for African American and White Rural Elders with a Life–Limiting Illness: A Program By The Community for the Community

African American and White caregivers in rural South Carolina who had been involved in the care of a loved one who had recently died, were asked what they found helpful or beneficial about the professional care (care provided by physicians, nurses, other hospital and hospice and nursing home staff staff) and what they considered ineffective or inadequate. Gaining an understanding of their perspective, through focus groups, was the first phase of this study. While this insight is important in and of itself, the more substantial purpose was to use this information to develop a culturally–based palliative care consult program for African American and White rural southern patients with a life–limiting diagnosis. Development of the program, in full collaboration with palliative care researchers and a team of African American and White community members, occurred in the next phase. Patient and family acceptance of this community–developed and culturally–based palliative care consult program was tested in the last phase.

Palliative care programs have been demonstrated to alleviate patient suffering and to enhance quality of life for patients with serious illness and their care-givers. Palliative care consults, in which a palliative care expert consults with the treating physician and makes recommendations for care, have been proven equally effective. Culture shapes how people make meaning out of illness, suffering and dying. Therefore, in palliative care, consideration of the culture of the patient and family is essential. Yet end–of–life care in the U.S. is rooted in values that represent the cultural and religious values of the white middle class. This was the first study to design a culturally based palliative care program for rural southern elders with life–limiting illness, and the first to do so with full community participation: “A Palliative Care Program by the community for the community.”

The study took place in Beaufort SC, a primarily rural southern coastal county with several small towns. Both perceived and actual differences between racial equality among African Americans and Whites are more strongly felt in the “deep South” than in other parts of the country. This is especially strongly felt in South Carolina; over 40% of African slaves were brought in to the US through this State, and during the Civil War, Beaufort County was a focal point of secessionist sentiment. Although a significant portion of the White population in Beaufort County are direct descendants of the early European settlers, or long–time residents of the area, there has been a large influx of affluent retirees who have settled in nearby Hilton Head and surrounding areas. The majority of the African American population have been in the county since they were brought over during slavery, and due to the relative geographic isolation (parts of Beaufort County includes several islands) have maintained the Gullah subculture, which includes a strong retention of indigenous African cultural elements. There is a high rate of poverty and unemployment, and associated health disparities within the African American community of Beaufort County.

Building trust within the community was the first goal of our academic palliative care research team (Study PI, two co–investigators, a palliative care physician and a research assistant.) Forming a partnership with the local hospital in which the last phase of the study would take place was the first step. The hospital’s outreach coordinator, Ms. C., had developed strong ties with many community organizations and members, both African American and White, and was deeply trusted and respected. She was instrumental in helping us invite community members, African American and White, to form a Community Advisory Group (CAG) that would guide the first phase of this study. The 14 members, equal numbers of African American and White, all residents of Beaufort County, comprised primarily of community leaders and gatekeepers. Also included were those who had recently lost a loved one, two hospital staff members not involved in the project, and two “regular” community members. These members were recommended by the hospital outreach worker familiar with all community groups and...