Diversity is main focus of some initiatives
Wuesthoff Brevard Hospice and Palliative Care in Viera, FL, handed out 3,000 living wills and gave nearly 30 community presentations during the first six months after implementing the Caring Connections consumer engagement program.
“This is all what we consider to be friendship building and relationship building,” says Charlie Antoni, RN, LCSW, manager for community outreach for Wuesthoff Brevard Hospice and Palliative Care. “We’re building all these different relationships based on needs, such as for AIDS awareness, advance directives, and health fairs,” Antoni says. “Our feeling is when you are in need, you go to those you know best, so if we’re a good partner and collaborator in the community, we’re the ones they’ll look to when they need hospice and palliative care.”
Caring Connections, sponsored by the National Hospice and Palliative Care Organization of Alexandria, VA, began last fall as guidance for hospices and other organizations working to increase public awareness about end-of-life issues. The program provides resources and encouragement for hospices to reach out to diverse communities and populations that traditionally underutilize hospice care due to poverty, racism, and other obstacles, Antoni says.
Antoni has worked with a wide variety of diverse communities, including African Americans, Hispanics, gays and lesbians, fundamentalist Christians and Catholics, and veterans. “This is where having ‘real’ relationship building vs. traditional marketing pays its greatest benefits to the community, as well as to the hospice agency,” Antoni says. “It starts with identifying key stakeholders and then meeting the people behind the identified stakeholder.”
Antoni and other experts describe some of Caring Connections’ outreach programs:
• Friendship breakfasts: Establishing trust takes time and personal relationships, and Wuesthoff Brevard Hospice has made inroads at developing trust within the African American community by holding breakfast meetings with community leaders, Antoni says. At one recent meeting, about 50 people — including local pastors, community leaders, and ordinary citizens — attended a breakfast at which there was a panel presentation about hospice concepts, Antoni says.
A keynote speaker talked about palliative care and the hospice experience. After the talk, the attendees formed two workgroups, divided geographically, that continued to meet monthly to identify the community’s need for education and awareness about hospice and palliative care, Antoni explains.
One workgroup had a member who belonged to a local college sorority, and the woman said her sorority had an international day of service for which AIDS was their focus. Another workgroup member said his ministry would be interested in doing a program on AIDS and African Americans, so the two organizations joined with a local AIDS service organization, received publicity from a local black newspaper and community college, and held a Wednesday night program on AIDS at a local church after the church service. The AIDS program was attended by 250 people, Antoni recalls.
• Community health fairs: Wuesthoff Brevard Hospice has worked with a local church to hold a health fair featuring the typical blood-pressure screening and diabetic screening booths, as well as a hospice booth, with volunteers available to help people fill out living wills and health care surrogate forms, Antoni says. The fair also featured information on housing, low-income assisted living facilities, and a range of materials about hospice work and hospice myths, Antoni adds.
“We will grow presentations out of this, and this goes back to our philosophy of having relationships that are real,” Antoni says. “We’ll be recognized in the community as a presence and permanence, and we don’t just come out once; we’re there on a regular basis to support the community and build relationships.”
• Spanish-language resources: Alta Consulting and the National Resource Center on Diversity in End-of-Life Care of Washington, DC, provide a Spanish-language resource for end-of-life care issues, says Myrna Peralta, JD, MSW, president of Alta Consulting and coordinator for the resource center. “The publication is a resource telling where to go for what and under what conditions, including Web pages, telephone numbers, and national resources,” Peralta says. “Part of the challenge is that the Latino community is not aware of the extent of materials available for end-of-life care, so we put together this publication listing a compendium of resources,” she adds.
The resources are available at www.nrcd.com.
• Town hall meetings: In Nebraska, end-of-life groups have held a town hall meeting on caregivers that was attended by 130 people and recorded by a public television station that will broadcast an hour-long program on the subject, says Jonathan Krutz, MBA, executive director of Nebraska Hospice and Palliative Care Association and the Nebraska Coalition for Compassionate Care in Lincoln.
People who serve as caregivers to family members joined medical professionals, university experts, and others to discuss caregiving issues in light of the demographic trends that have led to predictions that there will be a greater need for caregivers in the future, Krutz says. “We need to think about what we can do for our families to support the dying, because family caregiving is a key component of hospice,” he says.
• Quality consultants: In Kansas, end-of-life care professionals sponsored an educational program on pain management for physicians, nurses, and other health care providers, says Stacie Ogborn, project operations manager for the Kansas Living Initiatives for End of Life Care project in Wichita, KS. “We were able to host training for about 1,200 different professionals in our state,” Ogborn says.
Although this program took place under a program that preceded Caring Connections, called Rallying Points, its mission will continue as resources become available, Ogborn says. Rallying Points provided funding to pay for the consultants, and so far there is no similar pool of money available through Caring Connections, Ogborn notes. “But I don’t think you stop educating because you don’t have the money to do it,” Ogborn says. “We’re still going to try to make that happen, and the organizations are just going to have to come up with creative ways to bring pain management education to their communities.”
• Advance directives: Wuesthoff Brevard Hospice created a package on advance care for large corporate employers, Antoni says. “We offered to come to their location during the work day and put on short presentations on advance directives,” Antoni says. “We’ve done some of that work in churches, too, and we had one church ask for 630 living wills and health care surrogate forms.”
One church has planned a church-wide day of decision, and the hospice will support that effort, Antoni notes. “We have been at the county government building and community college and three large space-industry employers,” Antoni says. “So we’re building good partnerships with our corporate neighbors as well, and we’re filling a tremendous need.”
NAACP sought hospice as partner
When the National Association for the Advancement of Colored People decided to send advance directives to its local branches to engage those communities in discussions of end-of-life care, they came to the hospice as a natural partner to help them with the effort, Antoni says. “I’d like hospice administrators to understand if you build real relationships rather than just marketing relationships, then when there’s a real need, you’ll be the go-to person for them to seek as a partner,” Antoni adds.
• Publicity from alternative media: From Wuesthoff Brevard Hospice’s Caring Connections work, hospice directors have discovered that it is easier and more effective to seek publicity from alternative, community media sources rather than to simply try to get articles in an area’s dominant daily paper, Antoni says.
The hospice has worked with a local Spanish-language newspaper and a newspaper read by the African American community, and the hospice has encouraged the hospital to advertise in these publications, buying both consumer and employment ads, Antoni says. “It has to be a full circle of involvement, from recruiting employees and getting kids interested in these careers to putting revenue in small community newspapers, all of which furthers your presence and furthers you relationship with that community,” Antoni explains.
And this relationship will pay off with free publicity. For instance, when a national speaker about end-of-life care presented a column about advance care to the local daily and the community newspaper, the daily passed it up, but the community paper ran it, Antoni adds.
• Summit presentation: Wuesthoff Brevard Hospice also has plans to hold a sit-down summit with the local Veterans Affairs hospital and a local veterans service organization, Antoni says. The VA approach to health care doesn’t always fit in easily with the seamless transition of care the hospice and hospital might have, so that causes confusion and perhaps presents an obstacle to hospice referrals from the VA, Antoni notes. “So in the interest of trying to get on the same page, we are holding a summit meeting, “ Antoni says. “We hope that once we sit down with VA officials, we can talk about how we can partner and collaborate to gain a better understanding of what we need to do as providers.”
Hospice officials will discuss how hospice works in the community, VA officials will discuss how the VA can work with hospice, and both sides will answer questions from attendees, he adds.
Wuesthoff Brevard Hospice and Palliative Care in Viera, FL, handed out 3,000 living wills and gave nearly 30 community presentations during the first six months after implementing the Caring Connections consumer engagement program.
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