Hospice and African Americans: Exploring barriers to effective end-of-life care

This action research study was undertaken to identify how African Americans perceived and understood the many facets of hospice care, and to identify any barriers they faced in dealing with end-of-life care, any problems they encountered with enrollment in hospice care, and how they utilized hospice services. Qualitative interviews conducted with 10 African American participants resulted in the identification of eight major themes related to end-of-life care. Results indicated that African Americans perceived and understood hospice care through a religious or spiritual lens, and believed that hospice permitted them to continue to be the primary caregivers of their terminally ill. These are two of the identified themes. Results also indicated several cultural, institutional, familial, and individual barriers. These included a lack of pastoral or local church referral to hospice care, family awareness of hospice services, revocation or discharge from hospice care, historic mistrust of the healthcare system, pain management, and prior knowledge and experience of hospice care by the participant. Interventions included family conferencing with fictive kin and friends of the participants about hospice philosophy and services, aggressive outreach to African American pastors and allowing their involvement in the decision-making process, seminars were conducted in African American churches concerning the scope and benefits of hospice services, radio advertisements targeted African American communities on the use of hospice care, and two funeral homes provided preplanning advice to African American churches on funeral arrangements, advanced directives, end-of-life documents, and financial matters