Hospice Access and Use by African Americans: Addressing Cultural and Institutional Barriers through Participatory Action Research

Reese, Dona J., Aher, Robin E., Nair, Shankar, O'Faire, Joleen D., Warren, Claudia, Social Work

This article describes a participatory action research project addressing the problem of African American access to and use of hospice. Qualitative interviews conducted with six African American pastors resulted in the identification of major themes used for development of a scale to measure barriers to hospice. A subsequent quantitative study documenting these barriers was conducted with 127 African Americans and European Americans. Results of both studies, which were used to further social action efforts in the community, indicated the cultural barriers of differences in values regarding medical care and differences in spiritual beliefs between African Americans and European Americans. Results also indicated institutional barriers, including lack of knowledge of services, economic factors, lack of trust by African Americans in the health care system, and lack of diversity among health care staff. Implications for social work practice and policy are discussed.

Key words: action research; diversity; hospice; spirituality; strengths perspective

Hospice developed in the United States in the 1970s as a grassroots movement to promote more humane care for dying people. Hospice philosophy stresses patient self-determination, acceptance of death, and palliative rather than curative care. In addition, it advocates for dying in the home surrounded by loved ones, rather than in an institution surrounded by technology. Social workers provide hospice care in collaboration with an interdisciplinary team of professionals, who attend to biopsychosocial and spiritual needs of patients and families. Nationwide, ethnic and racial minorities represent only 5 percent to 7 percent of the hospice patient population.

A need for hospice care in the African American community is justified by the higher cancer mortality rate (Lowe, Barg, & Bernstein, 1995) and the prevalence of the AIDS virus among African Americans (Infeld, Crum, & Koshuta, 1990). This article describes a project that was conducted within the context of a participatory action research project, aimed at increasing African American access to and use of hospice. This article provides research results that address gaps in the literature and discuss implications for social work practice and policy.

Literature Review

The hospice literature reflects a number of barriers to hospice access and use for African Americans. The literature in this area contains mainly nonempirically based discussion papers, as well as surveys of hospice staff and records, rather than studies carried out directly with African Americans. Before discussing these barriers, however, two issues must be considered. First, we may not assume that the African American population is homogeneous, because there is wide variability among African Americans in terms of income, education, employment, geographic region, and country of origin (Dowd, Poole, Davidbizar, & Giger, 1998; Lowe et al., 1995). Within this diversity, however, a cultural unity may be detected that traditionally has characterized many African American families (Nobles, 1974), and during the great stress of terminal illness, patients who normally do not adhere to ethnic culture may resort to traditional modes of behavior (Harwood, 1981). It may be argued, thus, that it is useful for social workers to be informed about traditional African American cultural characteristics while avoiding stereotypes and unquestioning assumptions about clients.

Second, within the European American population, hospice is not well recognized or understood (Burrs, 1995). The general population is unfamiliar with hospice (Mor, Hendershot, & Cryan, 1989), and physician barriers to hospice referral abound, including inadequate physician training (Miller, Miller, & Single, 1997), availability of a program, and Medicare requirements, including a six-month prognosis and a requirement for 24-hour family caregiver in the home (Miller et al., 1997). Because referral to hospice is primarily by the physician (Gordon, 1995; Infeld et al., 1990), most terminally ill patients do not have their care provided through hospice programs, in 1995 only 37 percent of all people who died of cancer-related causes in United States and 31 percent of all who died of AIDS-related causes were cared for by hospices (National Hospice Organization, 1995).

Despite these barriers to hospice care for the population as a whole, hospice access and use are skewed toward European Americans. Medicare regulations describe patients and families from mainstream America and create barriers for disadvantaged groups. For example, European Americans are more likely to have the required full-time caregiver in the home (Gordon, 1995). Medicare regulations also require certification of terminality by a physician, and African Americans use emergency room care over a regular physician, regardless of other demographic factors such as income or insurance coverage (Heckler, 1985; Neighbors & Jackson, 1987). Additional information is needed about whether current managed-care approaches will change this pattern.

Another barrier to access is that many African Americans lack knowledge about hospice services (Burrs, 1995; Harper, 1995). In addition, lack of trust by many African Americans in the health care system as a whole (Lundgren & Chen, 1986; Neubauer & Hamilton, 1990) is a barrier to hospice use. African Americans often fear that they will receive experimental or inferior care (Burrs, 1995), do not want to be treated like "guinea pigs" (Harris, Gorelick, Samuels, & Bempong, 1996), and relate past experiences with being treated disrespectfully by health care professionals (Griffin & Bratton, 1995). African Americans often show a general reluctance to go outside of their family and circle of friends for help with medical crises (Harper, 1990; Lundgren & Chen, 1986) and often hesitate to welcome strangers from hospice into their homes (Gordon & Rooney, 1984). Lack of diversity among health care staff is cited as part of this problem (Burrs, 1995; Gordon & Rooney, 1984).

Another barrier to use has to do with values about medical care and extent of agreement with hospice philosophy. African American attitudes often are inconsistent with the hospice philosophy of palliative rather than curative care (Klessig, 1992; Neubauer & Hamilton, 1990; Ita, 1995-96, now Reese). African Americans often see longevity as an intrinsic good (Klessig) and have expectations of living a long life (Kalish & Reynolds, 1976). Most prefer curative care (Ita) and all life sustaining measures until death (Klessig), and many have not established a "do not resuscitate" order (Ita). In addition, most African Americans prefer not to die in the …

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Publication information: Article title: Hospice Access and Use by African Americans: Addressing Cultural and Institutional Barriers through Participatory Action Research. Contributors: Reese, Dona J. - Author, Aher, Robin E. - Author, Nair, Shankar - Author, O'Faire, Joleen D. - Author, Warren, Claudia - Author. Journal title: Social Work. Volume: 44. Issue: 6 Publication date: November 1999. Page number: 549. © 2009 National Association of Social Workers. COPYRIGHT 1999 Gale Group.

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