Want to enhance minority enrollment? Study suggests opportunities exist

Hospices are responding to the challenge of improving patient enrollment among minorities, and recent research shows that hospice's quality of care is perceived as high among African Americans. But experts say challenges and opportunities remain.1

"We know from previous research that African Americans perceive their quality of end-of-life care is poor," says Stephen Connor, PhD, vice president for research and international development at the National Hospice & Palliative Care Organization (NHPCO) in Alexandria, VA. However, a new study found that once African American patients are enrolled in hospice care, their perceived quality of end-of-life care improves.1

Using data from a family evaluation of hospice care survey, investigators reviewed information regarding more than 4,000 African Americans and 97,000 whites, Connor says. "We found that basically African Americans evaluate their experience once they get into hospice about the same as whites," Connor says. "So this disparity in end-of-life care seems to improve dramatically after they get into hospice care."

There remain issues about palliative care and a resistance to receiving it, but once African Americans are referred to hospice care, those are resolved, and they appear to be happy with the care they're receiving, Connor adds.

Disparities in noncancer diagnosis

Another recent study has found that hospice enrollment of African American patients with a noncancer diagnosis has increased, but disparities between African Americans and whites remain.2 "In 1999, 42% of African Americans had a noncancer diagnosis, and by 2003, this was up to 49.7%," says Kimberly S. Johnson, MD, an assistant professor of medicine at Duke University School of Medicine in Durham, NC. Among Caucasians, it was 57.9% who had noncancer diagnoses in 1999, and 64.3% in 2003, Johnson says.

"Many studies discuss health care disparities, but we focused on noncancer diagnoses because noncancer diagnoses have grown so much in hospice, and many people see these as less traditional [patients] than cancer patients," she says.

A possible reason for disparities in enrollment is a lack of knowledge about how hospices can serve noncancer patients, Johnson says.

"Some data from studies say African Americans know less about hospice," Johnson says. "Another thing that might be important is the idea that's supported by a number of studies that African Americans are more likely to want life-sustaining therapies at the end of life."

Several hospice CEOs say their hospices have worked hard in recent years to improve access to hospice among African Americans and other minorities and to improve perceptions of care among those enrolled. "In the African American community, we've been using the faith-based community as an entry point," says Malene Smith Davis, MBA, MSN, RN, CHPN, president and CEO of Capital Hospice in Falls Church, VA.

There are five megachurches serving African American communities in one county of the hospice's service area, so Davis has targeted those as places to market hospice services. This idea came from an African American U.S. congressman whom she'd invited to speak with the hospice staff about public policy issues. "While he was there learning about the hospice benefit, we were able to share with him that we were not able to serve the African American population as much as we'd like to," Davis recalls.

The congressman suggested Davis write letters to the large churches. He signed them as a way of introducing the hospice to African American congregations. The hospice has received some speaking engagement requests since the letters were sent out in the fall of 2007, Davis says. "We're recruiting volunteers from them," she says.

Also, the hospice has had inquiries from African Americans who would like to serve on the hospice's board, she adds. "We're looking for some new board members," Davis says. "We want to reach out to people who can teach us and help us progress and move down this path of sharing this good work that hospice does," Davis says.

Increasing bilingual workers helps

Capital Hospice also has worked hard to increase the number of hospice workers who speak Spanish and are Latino, says Emily J. Pezzulich, creative advisor for Capital Hospice.

"Our human resources department is actively recruiting bilingual and Latino staff in the local Spanish-language newspapers," she says. "In 2008, we will have a presence in various Latino job fairs, and we often cover costs for certain types of training as an incentive for Latino job-seekers."

It's Capital Hospice's goal to increase the ranks of people receiving hospice care from all races, creeds, and religions, Davis notes.

Other hospice CEOs also express concern about the challenges they've faced in diversifying their staffs and patient populations. Hospice of the Bluegrass in Lexington, KY, has focused on recruiting and retaining African American staff, says Gretchen M. Brown, MSW, president and CEO. "We have had limited success with that, particularly with clinicians," Brown says. "We have excellent African American employees, but we don't have as many as we'd like to see in the professional, clinical positions."

If the hospice had the same proportion of African Americans in clinical positions as there are African Americans in the community, then it would make a big difference in improving perceptions of hospice care among African Americans, she says.

Covenant Hospice in Pensacola, FL, which serves 35 counties in Alabama and Florida, tracks referrals according to demographics to make certain all members of the community are well served, says Dale O. Knee, MHCA, president and CEO. "We want to develop a better understanding within a cultural group and learn why there might be variances within the referrals," Knee says.

Covenant Hospice recruits minority staff at minority job fairs within the community and encourages staff to refer minority job applicants, he says. "If a registered nurse who is a minority recruits minority nurses to fill in open positions, then that's celebrated," Knee says. "We don't pay them a bonus, but we have other ways of recognizing them by making the person an employee of the month or year."

One of the hospice organization's most successful ways of improving hospice access among minority communities is its use of community advisory groups.

"We have advisory groups at each of the 13 branch operations, and these are made up of minority populations within those communities and minority members of our staff," Knee says. "Those advisory groups talk about real and perceived barriers to access to care at Covenant Hospice, and we develop strategies on how to reduce those barriers."

Most of the advisory groups meet quarterly. Members are recruited from within the hospice organization's volunteers, and minority staff members are asked to suggest people they know in the community, Knee says. "In some cases, we've more proactively gone out to minority leaders in the community and sought their advice and assistance in recruiting group members," he says.

The branch office directors and community educators also attend these meetings and discuss with the group how the hospice can improve minority access, he adds. Hospice professionals facilitate and encourage a group leader to emerge from the community members, Knee says.

Each group reviews the referral demographic data and looks for opportunities to better serve its community. They come up with suggestions for how to increase awareness of what hospice offers among ethnic groups, Knee adds. "We've had groups that are the most effective in terms of having an open exchange of information and guidance to us," he says. "We've had a measurable increase in referrals from minority populations."

Group's suggestions quickly implemented

Because the hospice's community educators participate in the advisory group meetings, they quickly can implement suggestions made by members, he notes.

For example, one interesting comment some advisory group members made is that the way hospice professionals describe hospice services might need to be changed with different populations, Knee says. "For one cultural group, it might feel like an insult when a hospice worker says that hospice is there regardless of your ability to pay," he explains. "Some people have a high level of pride and don't want to be characterized as indigent."

Also, some cultures are sensitive to being characterized as less affluent than others, and hospice workers need to be sensitive to those feelings, Knee says. "Even with well-intentioned language that all of us use every day, we might not be using the appropriate language for a certain culture we're serving," he adds.


1. Rhodes RL, Teno JM, Connor SR. African American bereaved family members' perceptions of the quality of hospice care: Lessened disparities, but opportunities to improve remain. J Pain Symptom Manag 2007; 34:472-479.

2. Johnson KS, Kuchibhatla M, Tanis D, et al. Racial differences in the growth of noncancer diagnoses among hospice enrollees. J Pain Symptom Manag 2007; 34:286-293.

Need More Information?

  • Gretchen M. Brown, MSW, President & Chief Executive Officer, Hospice of the Bluegrass, 2312 Alexandria Drive, Lexington, KY 40504. Telephone: (859) 276-5344.
  • Stephen Connor, PhD, Vice President for Research and International Development, National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. Telephone: (703) 837-1500. Web: www.nhpco.org.
  • Malene Smith Davis, MSN, MBA, RN, CHPN, President & Chief Executive Officer, Capital Hospice, 6565 Arlington Blvd., Suite 500, Falls Church, VA 22042. Telephone: (703) 531-6200.
  • Kimberly S. Johnson, MD, Assistant Professor of Medicine, Duke University School of Medicine, DUMC 3003, Durham, NC 27710. Telephone: (919) 660-7506. E-mail: johns196@mc.duke.edu.
  • Dale O. Knee, MHCA, President & Chief Executive Officer, Covenant Hospice, 5041 N. 12th Ave., Pensacola, FL 32504. Telephone: (850) 433-2155.
  • Emily J. Pezzulich, Creative Advisor, Capital Hospice, 6565 Arlington Blvd., Suite 500, Falls Church, VA 22042. Telephone: (703) 531-6242.