Data show minorities' views of hospice
Researcher suggests barrier breakers
Despite national and various regional focuses on improving minority access to hospice, many challenges remain, hospice diversity experts say.
The National Hospice & Palliative Care Organization (NHPCO), of Alexandria, VA, first assembled a task force on access to care of minorities in the late 1980s, and NHPCO began addressing the issue at annual conferences in the early 1990s, says Fay A. Burrs, RN, BSN, director of access and diversity at NHPCO.
While the national organization's attention to the issue has helped improve minority access to hospice, African-Americans account for roughly 9% of hospice patients, which is less than their 12.4% representation in the United States, Burrs says.
For the Latino/Hispanic population, hospice use is even rarer with Hispanics accounting for only 4.3% of hospice patients, while the minority group accounts for 12.8% of the U.S. population, Burrs adds.
"So we still are vastly underserved when we look at the racial and minority mixture," Burrs says.
A variety of barriers have prevented some African-Americans and other minorities from seeking hospice care, a hospice researcher says.
There are at least five major barriers within hospice that impact the access to hospice care by minorities, says Dona Reese, PhD, MSW, assistant professor in the school of social work at the University of Arkansas in Fayetteville.
First as a hospice social worker and later as a hospice researcher, Reese became interested in the topic of hospice care and cultural differences back in the 1990s.
"In 1990, I found that the African-Americans who were in hospice care tended to be young and have AIDS," Reese says. "At that time we had AIDS patients dying in hospice, and those patients didn't have good social support and were different from what you'd expect if you knew some information about the African-American culture."
When Reese interviewed African-American ministers about the AIDS patients, she often was told that the hospice was all that the dying young men had since they weren't hooked into the African-American community and its traditional church-based support system.
Later, Reese's research found that the vast majority of staff, volunteers, and patients in hospice care are white.1
Her research has identified a variety of individual, family, cultural, and religious barriers, including:
- denial;
- lack of understanding of hospice philosophy;
- private personality;
- lack of ability to care for a patient in the home;
- home visits seen as intrusion;
- taboo regarding discussing death;
- the idea that "we are to take care of our own;"
- role of extended family in caring for patient;
- most people want curative care and don't want to give up;
- hospice programs are threat to religious leaders; and
- religious beliefs influence treatment choice.2
However, there are barriers that are specific to hospices, including fear of harm, misconceptions, and lack of diversity among hospice staff, she says.
"My results showed that 94% of staff were white and non-Hispanic, and 96% of volunteers were white and non-Hispanic," Reese says. "That's shocking because that's one of the major barriers to having a diverse hospice group — being approached by an all-white hospice."
Racial and cultural groups that have experienced past discrimination and oppression are fearful when approached by white health care providers, Reese adds.
"We did a study in a rural area in a Southeastern state and interviewed African-Americans who have used or not used hospice services," Reese says. "And some who had not used hospice had never even gone to a doctor because of a fear of the white health care system."
Reese says there also is a perception among some African-Americans that when they're dying white people will show up at their door for the first time in their lives and tell them to sign an agreement that says, "If you're heart stops beating, we will not resuscitate you."
Real or imagined, the fears are based on their own negative experiences in the health care system, including affordability and access issues, or on the experiences of people they know, Reese says.
The negative information often is inaccurate.
For example, one person interviewed by researchers said, "Hospice will kill you." The person had heard about how hospice uses strong medications such as morphine and had heard about palliative care that may involve the withholding of nutrition, and so the person was afraid that a hospice would use these means to kill patients, Reese says.
Empowerment is the major issue, she says.
"The major theme I picked up on was they wanted to be empowered to care for their patients themselves in their homes," Reese says. "They were afraid the hospice staff would come in and take over."
In the cases of African-Americans who accepted hospice care, the major reason they gave for using hospice services was that they had a doctor they trusted who had introduced hospice staff to them, Reese says.
"They would meet with them personally and reassure the family and patient that the hospice staff would not take over or do anything that the caregiver did not give them permission to do," Reese says. "That was very important, and they thought they could trust the hospice staff because the doctor they trusted had recommended the hospice."
Reese's research has also shown that African-American ministers and many people in the African-American community believe that the hospice philosophy of accepting one's death would be seen as a lack of faith.
"They believe God will perform a miracle, and that's what they're praying for; so to accept their death would be an alien point of view," Reese says.
Although the problems with access to hospice services among African-Americans are long-standing, the same issue is becoming an even bigger problem among Hispanic populations, according to Reese's research.
"We had an 800% increase of Hispanics in our community in the last few years, and our hospices aren't serving them," Reese says. "It's not that they haven't tried, but I think hospices need a lot of guidance on how to do this."
NHPCO is developing a diversity toolkit for hospices and organizations that would like to improve hospice access to minorities, Burrs says.
"The toolkit has all of the components that people need to address the issue organizationally, personally, and with specific focus and features on end-of-life care and what we're charged to do," Burrs says. "Phase II of that project is to take all that information and then provide a template, a curriculum to give the organization a step-by-step process for unfolding this diversity initiative at their organization."
A 130-page preview version of the toolkit, which is expected to be made public next year, includes checklists, charts, definitions, and tips for identifying barriers and overcoming them.
Also, various hospices and hospice organizations around the country have worked with NHPCO to address diversity issues. One such effort is the Opening Doors Project of Hospice Minnesota in St. Paul.
"Several years ago, Hospice Minnesota was very aware that multicultural and minority populations in Minnesota and also throughout the country in general were not receiving, and were not aware of, end-of-life services for family members," says Barbara Greene, MPH, a multicultural and diversity consultant with Custom Health Consultants of St. Paul, and also program director/multicultural consultant with Hospice Minnesota, the state hospice organization that represents about 70 hospices.
Hospice Minnesota conducted a statewide survey of hospice organizations, asking them how much they served minority or multicultural families and patients, including the Hmong community, which is one of the largest in the country, Greene says.
"For the most part we found great work needed to be done," Greene says. "While a few hospices had bilingual staff and were knowledgeable in how to use interpreters and were aware of a diversity of beliefs around end of life and communications patterns, most hospices had not gone down this path before."
The hospices were very interested in learning how they could provide culturally proficient services for multilingual communities, Greene notes.
"So over the last three years, we have looked at this issue, and my role is to help guide and facilitate and bring together hospices throughout Minnesota to improve their cultural proficiency on end-of-life care," she says.
The hospice organization has provided training at seminars, workshops, special events, and conferences and has had a variety of hospice materials translated into the Spanish and Hmong languages, including patient and family information that can be distributed in those communities, Greene says.
Fourteen hospices in Minnesota have joined to be part of a pilot project in which they work together on multicultural end-of-life issues, Greene notes.
"This year we're going to have some very targeted training sessions for hospices on the use of interpreters at the end of life," Greene says. "It's a very critical need."
At the organization's web site (www.hospicemn.org) there are diversity materials posted, including brochures and pamphlets that have been translated into other languages, Greene says.
"It's an ongoing priority of Hospice Minnesota and their board of directors, and I guess we're finding it's of great national interest," Greene says.
"I think people who choose to work in the field of hospice are some of the most sensitive and dedicated people," Burrs says.
"We keep hearing from hospice staff that they want to diversify and do it right, but they don't have the resources to do so," Burrs adds. "So the diversity toolkit is a response to hospices wanting to do the right thing."
References
1. Reese DJ, Melton E, Ciaravino K. Programmatic barriers to providing culturally competent end-of-life care. Am J Hosp & Pall Med 2004; Sept/Oct:357-364.
2. Reese D, Braden L, Smith M. African American Access to Hospice: An interdisciplinary participatory action research project. Paper presented at National Hospice & Palliative Care Organization conference, held in March 2004, in Las Vegas.
Sources
For more information contact:
- Fay Burrs, RN, BSN, director of access and diversity, National Hospice & Palliative Care Organization, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314. E-mail: [email protected].
- Barbara Greene, MPH, multicultural and diversity consultant, Custom Health Consultants, 1417 Fairmount Ave., St. Paul, MN 55105. Phone: (651) 690-5526. E-mail: [email protected].
- Dona Reese, PhD, MSW, assistant professor, school of social work, University of Arkansas, 106 Academic Support Bdg., Fayetteville, AR 72701. E-mail: [email protected].
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