End-of-life coalitions forming nationwide

Projects aim to improve quality of care

Hospice directors and staff sometimes find that it’s difficult to change a prevailing attitude about death and dying when that attitude involves an entire community. This is where the Rallying Points program, designed to build community coalitions to support end-of-life care, can be a solution.

"You don’t need Rallying Points to start a coalition, but the resources are available through Rallying Points," says Kathleen Jacobs, MA, coordinator for the Rallying Points Regional Resource Center at The Hospice of the Florida Suncoast in Largo. "We are a resource center for community," Jacobs says. "We provide technical assistance and mentoring and networking for 140-something active coalitions in 22 states in the East and Southeast." There are additional resource centers in the West and Midwest, she says.

Funded through a grant, the Rallying Points program offers its services free of charge to any organization that is interested in forming a grass-roots coalition. Those organizations do not have to involve a hospice, but most do, Jacobs says. "These are concerned citizens, agencies, organizations, providers, and any interested party," Jacobs says. The chief advantage of forming a coalition is that it will expand outreach possibilities for any hospice, she says.

"I think coalitions allow a hospice to not only reach people in the community they wouldn’t otherwise reach, but also to hear from people in the community they wouldn’t otherwise hear from," Jacobs says. "I think it helps a hospice to understand what the community wants in terms of end-of-life care."

Through a coalition, hospice representatives sit at the same proverbial table as many other people, giving all sides an opportunity to understand barriers and bridges toward better hospice and end-of-life care. "I think that helps to disseminate the message to a much larger audience, and it also helps to promote community ownership of [hospice] issues," Jacobs says. "That’s how social change happens, I think."

The coalitions that have formed have launched various initiatives that have improved end-of- life care in those communities. One example is a coalition in North Carolina that adopted a program called Support Team Networks in which volunteers are trained to provide care in retirement communities, Jacobs notes. "Within the course of six months, they provided care to 2,000 citizens in their area," Jacobs says. "It’s impressive to see the ripple effect in the community, where the work has not promoted any member organization per se, but has heightened awareness of issues overall."

The first step to forming a coalition is to form a working group of people who are committed to discovering what a particular community needs, Jacobs says. "Make sure the group is addressing those needs, and then take an inventory of what resources exist in the community and what they could bring," she suggests.

The list typically might include people and organizations working on end-of-life issues with an eye toward changing end-of-life policies, Jacobs says. "You can provide end-of-life services as a hospice, you can provide end-of-life education at a college, and you can promote public policy as a lobbyist or attorney," she says. "But to come together as a coalition is to ask, What can we do together that we can’t do on our own?’"

If the coalition’s goal is to affect public policy and opinion, then the group should take an inventory of who already is doing this in the community and how the group might work with those people to be more effective, Jacobs explains. "Depending on what piece of the puzzle the coalition wants to impact, they can look at finding stakeholders for that piece," she says.

In fact, one of the coalition’s chief strengths is that no one owns it, Jacobs says. "It may have a leader, but the community agenda and changes in the community’s needs and desires are what drive a coalition," she says. "It’s a very nice cooperative opportunity for all people in the community who are interested in paving the way, and they don’t all have to be health care providers."

(Editor’s note: More information about Rallying Points and about forming a coalition is available at www.thehospicerallyingpoints.org.)