Background: In 1997, the Institute of Medicine called for reform, improved quality and expanded research in end-of-life care. Yet little empirical information about preferences of African Americans has been documented. A community-campus partnership was formed to guide a needs assessment related to end-of-life care in a Southern, urban, African American community. This paper presents focus group findings related to end-of-life and palliative care.
Methods: A qualitative design of multiple-meeting focus groups was used to explore experiences, preferences, needs, and feelings expressed by family members with at least one relative who had died in a hospital (group 1) or at home (group 2). Sessions were taped and transcribed; themes were identified using systematic analytic procedures.
Results: Thematic analysis revealed key concerns related to health care provider communications about end-of-life care and dying. Positive communications empowered and showed respect for patients and family members and recognized the importance of their spiritual beliefs; informed them about resources available to assist dying at home; and, for patients dying in the hospital, treated them with nurturing, compassion, and diligent monitoring of the patient's medical status and needs. Other themes related to end-of-life care issues include preparation, planning, and access. A table of quotes from participants is available from the corresponding author.
Conclusions: Findings suggest important clinical implications for clinicians and other health professionals. These voices from the community remind us of the heterogeneity in needs and preferences and challenge us to listen and tailor communication to each patient and their families.