Sincere efforts to reach African-Americans may not be enough
Sincere efforts to reach African-Americans may not be enough
Respect for heritage, spirituality, and leadership key to outreach
Despite some hospices’ sincerest efforts, a much smaller percentage of terminally ill African-Americans seek hospice care than do terminally ill white patients. While hospice leaders may think they understand the reasons behind this problem, few have thought that perhaps they are part of the problem.
According to the National Hospice and Palliative Care Association, only 8% of those cared for by hospices are African-Americans. That’s far shy of the 12% that would be needed to match the proportion of African-Americans in the United States. By comparison, whites, who make the largest population of hospice patients, account for about 80% of both hospice patients and the total population.
Conventional wisdom regarding the underuse of hospice by African-Americans holds that, as a population, they misunderstand hospice care and mistrust health care providers in general. There is a feeling among African-Americans that hospice care is in some way substandard care or a form of withholding curative treatments that could rid them of their diseases.
While most people associated with hospice care would deny that this kind of discrimination takes place, one African-American hospice administrator says hospices must understand that these suspicions are real and are based on painful historical wounds that have been slow to heal.
"Mistrust exists because there is a history of African-Americans being denied care," says Gregory Townsend, program director for the Birmingham (AL) Area Hospice.
But historical circumstance isn’t the sole reason for hospices’ inability to reach terminally ill African-Americans. Hospices have done a poor job of educating the African-American population about hospice. "When they get sick, they don’t get the all the information they need," says Townsend. "Then when they are told there is nothing more that can be done for them and that they might want to consider hospice, they think care is being withheld from them."
Townsend recalls the story of an African-American woman who was referred to another Birmingham-area hospice following a terminal diagnosis of cancer. After her physician informed her that they had exhausted every treatment that was available, a case worker mentioned hospice, but did not provide enough information about the kind of care she would receive there.
"People think that hospice is a place where they send people to die," Townsend said. "She thought she would be away from home and away from her family. She called me to get a better explanation."
How about the countless others who don’t make that phone call to get better educated? Most will likely avoid hospice, believing that its services are reserved for those without hope. That’s why it is incumbent upon hospices to go into African-American communities and provide education and solicit their help.
Seek advocates from within the community
Traditional methods of going into communities may actually be working against hospices. Sending an African-American hospice worker
to give a talk to a local community group, for example, can be seen as condescending and self-serving, says the Rev. Joseph Davis, president
of the National Black Church Family Council in Tuscaloosa, AL. Davis’ organization is made up of Birmingham-area ministers who spearhead community service programs, including a health ministry that supplies volunteers who help provide care to the sick and elderly.
"You have to look for advocates in the black community to address their own neighbors," Davis says. "Coming into a minority community, especially in rural areas, is a lot like being a missionary in a foreign country. The first thing you do as a missionary is show respect for the leaders of the community and show them you want to work with them."
Townsend and Davis advise hospices to address the following issues in order to successfully reach African-Americans:
• Make sure your hospice is a model of the community.
• Show respect for their cultural heritage and leadership of the community.
• Address unique spiritual needs.
• Take advantage of strong community ties.
• Enlist the help of those in the community.
Like all other businesses, hospices have an obligation to ensure that those treating the community are a fair representation of the community itself. If the community is 20% African-American, then your staff should be 20% African-American. Caring about diversity in an organization is a big first step toward showing a community that the interests of minorities are important to you.
But that is only the beginning. Hospices cannot simply rely upon sending their own representatives, such as a nurse or social worker, into a community to provide hospice education. Even though a hospice is sensitive to a community’s need to see someone of a similar racial background, that gesture doesn’t go far enough, says Davis.
The barrier of mistrust is hard to breach because there is still a belief that the hospice worker is speaking to benefit the organization he or she represents, not to benefit the community. For that reason, typical public awareness programs have limited value in African-American communities.
But those same kinds of programs can have a greater impact when implemented in conjunction with community leaders, such as ministers and civic leaders. Further, Townsend says, hospices must be willing to listen more than they are willing to talk.
"You cannot come in and begin talking about what you are going to do to make their lives better," Townsend says. "You need to let them tell you what they need for you to make their lives better.
Spiritual care is a good example. While hospices are generally open to providing a wide variety of spiritual care through their own spiritual counseling, African-Americans have a rich spiritual heritage that is deeply rooted in community worship.
Davis resents the hospice notion that it can come into his church community and provide spiritual care. "Hospice is not the church," he says. "Hospice is a community service."
Still, addressing African-American communities’ spiritual needs should be a priority, says Townsend. It’s just that hospices have to address African-Americans’ spiritual needs in a way that preserves the primacy of the community’s existing religious framework, such as by creating a network of local ministers who will provide the bulk of spiritual care.
"People are more likely to listen to their minister because the church has always been the cornerstone of the African-American community," Davis notes.
As hopices become more open to suggestions from those they are trying to serve, they will gain a greater understanding of the challenges that African-Americans face when confronted with a terminal illness. The uniqueness of the typical African-American approach to dealing with death and caregiving will become clear.
For example, African-American families care for their dying loved ones differently from the way white family members do. For hospices, this means:
• Families should be informed and counseled on the availability of services to assist with care in their communities.
• Health care professionals should monitor patient and family caregiver needs for services throughout the illness.
• Community groups and agencies should focus on supplying support to African-American female caregivers (particularly daughters), because a much larger percentage of women provide care in African-American families than in Caucasian families.
• Because of their heavy involvement in providing care, informational classes, support programs, and booklets should be designed specifically to meet the needs of African-American women.
The bottom line, however, is for hospices to go into African-American communities and tailor these kinds of programs according to what community leaders say should be done.
"We’ve seen tremendous progress in Birmingham," says Townsend. "Once a few people choose hospice and they begin talking about how great an experience it is, good news travels fast."
Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.