Hospices can do more to improve access to diverse communities

King's death highlights problem

The controversy surrounding Coretta Scott King's recent death at a Mexican alternative care clinic known for promoting unorthodox cancer treatments obscured a fact that hit home for hospices: the renowned widow of Martin Luther King, Jr., had chosen to attempt a cure for her advanced ovarian cancer in her last days rather than seek hospice care.

Her decision may not be as unusual as it seems, especially among African Americans at the end of life, according to research.

One study of African Americans and their views of hospice care showed that they were oriented toward desiring every treatment that's available and curative care, rather than palliative and hospice care, says Dona Reese, PhD, MSW, assistant professor in the school of social work at the University of Arkansas in Fayetteville, AR.

There are many historical and cultural reasons for this attitude, but hospices partly are responsible because they don't work hard enough at becoming culturally competent, Reese notes.

"It's important for hospices to change themselves to have services that are culturally appropriate," Reese says.

"There are practice models available that will help hospices become culturally competent and which will help them reach out to diverse communities," Reese says. "But hospices have not generally implemented these models."

Reese conducted a study last fall to find out what barriers existed within hospices, preventing them from providing culturally competent services.

She found that the problems chiefly are due to these five factors:

1. There's no funding for the staff to provide community outreach.

2. There are two few applications to hospice from diverse professionals. According to NHPCO statistics, the percentage of physicians who are minorities in the U.S. is 7 percent, while the percentage of nurses who are minorities is 3 percent.

3. Hospices provide no funding for development of culturally competent services.

4. Hospice staff lack knowledge about diverse cultures, and this can lead to stereotyping.

5. Some staff are not aware of what cultural groups in their community are not being served.

"Right now, I'm working on a project on how to address those five major barriers," Greene says.

The National Hospice & Palliative Care Organization (NHPCO) of Alexandria, VA, has made it a priority to improve access to hospice care among minorities, says Fay A. Burrs, RN, BSN, director of access and diversity.

NHPCO assembled a task force on improving hospice access to care among minorities nearly 20 years ago, Burrs says.

The organization has addressed the issue at annual conferences and at town hall meetings since the early 1990s, she adds.

"In 2004, the strategic plan of NHPCO made access and quality the two major arms by which it would address the issue of hospice care in America, because the two are intricately connected," Burrs says. "You cannot have true access to care without it being quality care, and if you have quality care, but some people don't have access, it's still missing components."

One result of NHPCO's work is a diversity toolkit, which will be published within the next year. (See chart below.)

NHPCO addresses the benefits that can be gained from increased cultural proficiency in the toolkit, as well as ideas to consider when recruiting a diverse workforce. (See chart below.)

Access issues exist for Hispanic, Asian, and other communities, as well. In some states, such as Minnesota, state hospice organizations have taken the lead in improving access for minority communities. In others, like California, dedicated individuals and hospice organizations have been the leaders.

Despite California's diverse Asian communities, there have remained barriers to hospice care among Chinese Americans and other Asian Americans, says Sandy Chen Stokes, RN, PHN, MSN, a public health nurse and a consultant in end-of-life care, who lives in Shingle Springs, CA. Stokes works with the California Coalition for Compassionate Care and has spearheaded efforts to form the Chinese End-of-Life Coalition based in Sacramento, CA.

While the younger generation of Asian Americans is comfortable with the concept of hospice, it remains a new idea to older Asian Americans, who never saw anything like it when they were growing up overseas, Stokes says.

Older Chinese Americans may believe that talking about cancer could make a patient's condition worse and hasten their death, Stokes says.

"We have a high percentage of patients who sign-up with hospice, but unfortunately they don't know what they've signed up for," Stokes says. "They might not know they have cancer and are dying because the family keeps it from them."

Many Asian Americans believe that if they don't tell their loved one about the diagnosis then the person will suffer less, Stokes adds.

The key is to educate health care professionals and the Asian community about hospice care, and that is part of the mission of the coalitions, Stokes says.

"We'd like to increase education for the Chinese community through media outreach," she says. "With one-on-one education, people may not want to talk about it, but if we provide the information through the newspaper, radio, or television, then it's not talking with them specifically, so it's okay."

The Chinese coalition's three major goals are as follows:

1. Advertising in the Chinese community: While Stokes worked as a consultant for the California Coalition, she initiated the translation of end-of-life articles into Chinese and worked with the local media to reach Chinese doctors and family caregivers to discuss end-of-life care.

2. Educating providers: Stokes has spoken before groups of doctors about end-of-life care in the Chinese community, and she has attended committee meetings and held presentations on the topic.

3. Training Chinese volunteers: The American Cancer Society started a Chinese unit for home visits. "We go to a Chinese person's home and visit," Stokes says. "We accompany them and support the family, as well."

Hospice Minnesota formed the Opening Doors Project to provide multicultural resources and to bring interested hospices together for brainstorming and educational sessions, says Barbara Greene, MPH, multicultural and diversity consultant with Custom Health Consultants of St. Paul, MN. Greene has worked with Hospice Minnesota as program director for the Opening Doors Project.

"For the last three years, we've done quite a bit of training in terms of seminars, workshops, and portions of state-wide conferences," Greene says.

Some resources and materials promoting diversity are available at the organization's Web site: www.hospicemn.org.

For instance, since one of Minnesota's multicultural populations is the Hmong community, there is a two-page pamphlet on communicating and understanding Hmong patients.

The pamphlet lists some basic Hmong words and their pronunciation, as well as some communication suggestions for health care workers. One example is the suggestion to "Ask who the decision maker or spokesperson is for the family. Identify the best way to reach this individual, if an interpreter is needed, or if the family has other important communication needs."

Another suggestion is: "Referring to oncoming death is not well received. Preferred communications include, 'To help your mother feel better' or 'To make your father more comfortable.' Referring to oncoming death is perceived as inviting the death of a loved one."

Need More Information?

  • Fay Burrs, RN, BSN, Director of Access and Diversity, National Hospice & Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. Email: fburrs@nhpco.org.
  • Barbara Greene, MPH, Multicultural and Diversity Consultant, Custom Health Consultants, 1417 Fairmount Ave., St. Paul, MN 55105. Telephone: (651) 690-5526. Email: barbara-greene@comcast.net.
  • Dona Reese, PhD, MSW, Assistant Professor, School of Social Work, University of Arkansas, 106 Academic Support Bdg., Fayetteville, AR 72701. Email: reese@uark.edu.