FAYETTEVILLE, Ark. — A University of Arkansas study shows that fear, distrust and misinformation about hospice programs have led some African-Americans to avoid hospice care. A second UA survey of hospice directors identifies barriers to reaching these and other culturally diverse groups and suggests ways the programs can overcome such barriers.

Dona Reese, a UA assistant professor of social work, is involved in an interdisciplinary effort to study how hospice programs can better serve a more diverse patient population.

Hospice programs provide “palliative care” and attend to the emotional, spiritual, and financial needs of terminally ill patients. Palliative care is treatment given to control symptoms of an illness, usually in instances in which a cure is no longer an option.

“In 2001, only 18 percent of hospice patients were culturally diverse,” Reese said. “That’s not representative of the entire U.S. population, which was 28 percent diverse. So, clearly, something needs to be done.”

Reese conducted her first study by interviewing 20 African-Americans in the city of Camden, Ark. Nearly half of the population is African-American, with other minority groups making up almost 2 percent of the city’s population.

Of the 20 participants interviewed, one was a hospice patient and the rest were family members caring for a terminally ill patient in their home. Half of these families used hospice services and the other half didn’t.

Reese’s research shows that people with more conservative, traditional views are more likely to have negative perceptions of hospice programs. Many expressed fear of the medical community in general. They cited the medical experiment from 1932 to 1972 in Tuskegee, Ala., in which African-American men who had syphilis were allowed to die without treatment because their doctors wanted to see how the disease would affect the body.

People who had heard horror stories of this sort never went to the doctor at all. By avoiding physicians, however, they missed the opportunity to hear about hospice programs.

Other residents thought that hospice was a dangerous program that killed patients. Some fears may have arisen from religious or cultural values. For instance, a resident might be against the use of drugs like morphine, which are often administered by hospice caregivers to make patients more comfortable in their last days.

“One man said, 'They’ll kill you with all that medication,’” Reese recalled.

On the other hand, the research showed that families who used hospice services were better able to cope with the death of their family members than were non-hospice clients. With hospice, the families and the patient were provided with psychological and social services to help deal with their feelings of grief, fear or anger, or their need to say goodbye or make amends with family members.

In contrast, Reese said, some of the patients without hospice care were not even told that they were dying. They did not receive information about their treatment options, and were unable to prepare for their death.

“At the end of the interviews, all of the patients or family members said they would choose hospice in the future, now that they had all the information about it,” she said.

The study also identified ways to inform the communities and overcome the cultural beliefs and fears that perpetuate misinformation. According to Reese, relating to people of diverse cultures is the best way to reach them. Among African-American communities, for instance, one of the best ways to spread information is by word of mouth. Having former African-American caregivers or African-American church leaders talk to groups about the program and its benefits would help tie the program in with the community’s cultural and religious beliefs.

The participants also suggested that hospice staff develop relationships with the community so people could become familiar with it before they needed it themselves. One way to develop that type of relationship would be to collaborate with African-American ministers by hiring them or adding them to the hospice board of directors.

Reese’s second study, which involved hospice directors, identified barriers such as language barriers and lack of understanding of cultural differences, both of which may stem from the lack of diversity among hospice staff. Other barriers discussed included physical location, degree of formality, amount of paperwork, lack of continuity of care and bureaucracy.

Reese found that some of the directors were making efforts to provide culturally competent care through cultural-competence training, using interpreters and providing materials in other languages. Most printed information was in Spanish, although one program had materials in Vietnamese. Nineteen out of 22 programs offered interpreters, and one program had German, Polish and Dutch interpreters.

They were also reaching out to the community by providing information through churches, local grocery stores and health fairs. One program invited a Hispanic community member to the hospice to discuss pain control methods.

The directors most interested in cultural diversity training for staff, and most concerned about the low percentage of diverse clients, were the ones most interested in community outreach.

Some of the directors, however, believed their agencies were doing well in serving diverse clients. They didn’t see the need to develop cultural competence because, they said, their communities were not diverse.

“I’d be interested in seeing just how culturally diverse their communities are,” Reese said. “Maybe it’s more than they realize.”

Others felt the barriers to culturally competent care were too difficult to overcome.

The key to addressing the programmatic barriers, Reese said, is proactive leadership. Her paper suggests that program administrators should model openness to diverse cultures and address racism in their communities. Administrators also should establish requirements for cultural diversity training for staff, use of interpreters, recruiting bilingual and culturally diverse staff and volunteers, and use of culturally appropriate materials.

These are the first two studies in a three-part series to discover barriers to serving diverse clients in hospice. Reese presented her first study at the National Hospice and Palliative Care Organization Conference last year. The study was done in collaboration with Larry Braden, M.D., medical director of the Ouachita County Medical Center Hospice.

Reese’s second study, “Programmatic Barriers to Providing Culturally Competent End of Life Care,” was published in the American Journal of Hospice and Palliative Medicine last fall.

The second study involved surveying 22 hospice directors in Arkansas. Undergraduate students asked the directors for their views on hospice’s state of cultural competence, barriers to providing care to culturally diverse clients, and ways to better serve culturally diverse groups.

Reese’s third study, a survey on organizational barriers to cultural competence, is currently being conducted and involves 2,500 hospices nationwide. The survey will ask questions based on the barriers found in the previous two studies and literature, and will use results to develop an approach for hospices to use to address the barriers. The third study is being done under contract with the National Institutes of Health, which has named Reese a Health Disparities Scholar.

The Arkansas State Hospice and Palliative Care Association Cultural Competence Committee Needs Assessment project is being funded by the Social Work Research Center to study access to hospice programs for culturally diverse people. Reese and the UA School of Social Work are joined by researchers from the University of Arkansas for Medical Science, the Arkansas Cancer Research Center and the UA doctoral program in public policy.