Attitudes, Values, and Questions of African Americans Regarding Participation in Hospice Programs

Abstract

As the US population continues to become more racially and ethnically diverse, ethnic and racial minorities are strikingly underrepresented in hospice and palliative care programs. This article describes a qualitative study exploring the perceptions and experiences of African Americans regarding end-of-life care and participation in hospice programs. The data were collected from 28 participants in focus groups held in churches with large African American memberships. The key findings include a pervasive lack of information about hospice, producing numerous assumptions about hospice services, as well as cultural and institutional barriers. Misconceptions about hospice included assumptions that the care would be inadequate, people would die lonely, painful deaths, and that hospice was inaccessible to African Americans because of cost. Themes of mistrust and misconceptions permeated the data. Recommendations from the participants and the investigators are offered to increase the delivery of culturally consistent care to African Americans at the end of life.