In 2000, Tuskegee University's Center for Bioethics in Research and Health Care conducted a roundtable discussion about African-American perspectives on end-of-life care in order to plan a national conference on the same topic.
According to the project director, African Americans hesitate to use advance directives (written documents that state how a person wants medical decisions made if he or she is unable to make those decisions).
This is in part because they lack information about them—they are not likely to be well informed about long-term nursing home care, hospice or similar programs; and they care for their terminally ill at home.
This project was part of the Robert Wood Johnson Foundation's (RWJF) Targeted End-of Life Projects Initiative, which advances RWJF's objective to improve care at the end of life.
Approximately 40 representatives of heath care providers, academia, the research community, the clergy, the criminal justice system and funeral homes attended the two-day "Roundtable Consultation on African-American Perspectives on End-of-Life Care," which took place on June 5–6, 2000 at Tuskegee.
Roundtable participants decided that the national conference would address:
- The extent to which ethnicity influences patient and family experiences and caregiver responses.
- How ethnicity impacts end-of-life issues.
- Cultural barriers to fair care at the end-of-life.
Participants also made general recommendations, including:
- Increase research and education on, and public awareness of, death and dying in the African-American community.
- Incorporate death, dying and end-of-life issues in undergraduate curricula.
- Establish a multi-layered strategy in the African-American community toward end-of-life issues that covers service and health care providers and caregivers/family members.
- Examine the impact of legal, regulatory, reimbursement and public/health policy factors on end-of-life issues.
- Publish and disseminate conference proceedings to caregivers and scholars.
The national conference took place 2004 under another RWJF grant (ID#s 042496 and 047348).