Problems:

Thousands of Americans die alone, in pain and attached to machines. This is a problem for all Americans, and is certainly more pervasive among African Americans, who have higher mortality rates from cancer, cardiovascular disease, AIDS, and other illnesses. Although end-of-life care is improving in this country, these improvements have been slow to affect the African American community.

• Disparities in the health care system between African Americans and whites continue into end-of-life care. Unequal access to all medical care, including hospice and palliative care, is a major obstacle for African Americans and other minority groups.
• It has been well documented that African Americans under-use palliative and hospice care services. African Americans make up 13 percent of the total U.S. population, but only 8 percent of hospice patients (as compared with 83 percent of whites).
• Numerous studies have found that African Americans are more likely to be under-treated for pain than whites in emergency rooms, during hospital stays, and in outpatient clinics and nursing homes. Recent findings have also suggested that pharmacies in nonwhite neighborhoods may not stock sufficient medications to adequately treat patients with severe pain.
• Lack of awareness in the African American community about end-of-life care has also contributed to the low rates of participation in hospice and limited use of advance care planning documents, like living wills, which communicate the requests of a dying person to family members and physicians.
• End-of-life care financing needs fixing. The current health care reimbursement system presents formidable barriers to getting good palliative or end-of-life care. The most obvious is the lack of an outpatient drug benefit under Medicare, but other problems include a lack of funding for respite and bereavement services, insufficient coverage of home health care and hospice, and a reimbursement system that may encourage discharging patients who primarily need palliative care. The existing financing structure rewards providers for performing procedures, in contrast with offering the supportive services so important for people nearing the end of life.

Solutions:

• Targeted education and outreach efforts to improve awareness and access to good care at the end of life.
• Medical education and training that includes pain management and palliative care, with a particular emphasis on African Americans and other minorities.
• Reimbursement policies that provide incentives to hospitals and hospices to provide appropriate palliative and end-of-life care services.

Editor's Note: This article was originally published on www.lastacts.org, the Web site for Last Acts, formerly a national program of the Robert Wood Johnson Foundation. Be advised that the content of this article might be dated or inaccurate. The Foundation is reprinting the article here as a matter of general and historical interest.