New Caring Connections program gives consumers advance-directive info

States find various ways to use program’s resources

When thousands of Americans suddenly decided last March they needed to think about end-of-life issues because of the publicity paid to Terri Schiavo’s hospice care and death, a new project called Caring Connections was readily available to provide them with the information they sought on advance directives.

The National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, created Caring Connections in the fall of 2004 with funding from the Robert Wood Johnson Foundation (RWJF), says Kathy Brandt, MS, vice president of professional leadership and consumer and caregiver services for NHPCO.

Caring Connections is a continuation of RWJF grants directed at end-of-life care. The program is designed to increase community awareness and knowledge of hospice through capacity-building local projects, such as forming coalitions for end-of-life care issues, and national services, including websites, brochures, and other resources, Brandt says.

One of the first projects under Caring Connections was the creation of a website (www.caringinfo.org) that provides free resources on advance care planning, caregiving, pain, hospice and palliative care, grief and loss, and financial issues. Visitors can obtain state-specific advance-directive documents and instructions. The website had more than 90,000 hits between the end of March and the end of April, Brandt says.

Also, a help line available to people who have questions about end-of-life care had huge increases in call volume shortly before and for at least a month after Schiavo’s death. From a typical 150 calls per day, the call volume peaked at 1,200 calls per day, continuing at a rate of more than 600 calls per day through April, Brandt says. “People are looking for information about advance directives right now, and we’re sending it out to them free of charge,” Brandt says. “The grant pays for it.”

Caring Connections’ work has assisted some hospices in expanding their outreach to minority communities, using new ideas and approaches for this work, says Charlie Antoni, RN, LCSW, manager for community outreach at Wuesthoff Brevard Hospice and Palliative Care in Viera, FL.

“I really feel this is the direction where we as hospices need to go, and it’s where we’ve never been,” Antoni says. “We’ve given lip service to being community partners, but now we’ve changed it to ‘We’re in your neighborhood, and we know we want your business, so we didn’t send you a letter or flier; we sent me.’”

Through a website (www.endoflifecoalitions.org) intended for hospices and other end-of-life care providers, there are free resources detailing fundraising activities, outreach presentations, caregiver support guidance, sample press releases, fliers, town-hall meeting ideas, and other tools.

“The tool kits have so many practical, usable units,” says Stacie Ogborn, project operations manager for the Kansas Living Initiatives for End-of-Life Care (LIFE) project in Wichita, KS. “If you want to use a poster on how to talk about end-of-life care, all you have to do is use their poster and drop a label on it,” Ogborn says.

The $2.3 million RWJF grant is for one year, and NHPCO is in the process of requesting funding for another two years, Brandt notes. “Part of what we were asked to do with the grant is to continue to advance the work the Robert Wood Johnson Foundation had previously funded, including the Rallying Points program and the End-of-Life Coalition,” Brandt says.

Funding for those programs has ended, and Rallying Points was closed in January 2005, but through Caring Connections, the NHPCO and other organizations that had been involved in those initiatives plan to continue to use the coalitions and resources that were built as part of the earlier work, Brandt says.

“We’re providing a lot of resources free of charge to consumers, and hospices can join our engagement campaign,” Brandt says. “We’ve established a frequent flier rewards program, so the more activities hospices and coalitions do as part of the How you Live campaign, the more points they’ll earn and exchange for marketplace gift cards to purchase resources for their outreach programs.”

Caring Connections provides an excellent opportunity to reach deeper into communities around the country with hospice outreach and education, says Myrna Peralta, JD, MSW, president of Alta Consulting of Washington, DC. Peralta has been the coordinator for the National Resource Center on Diversity in End-of-Life Care in Washington, DC.

“Over the last several years, the investment by the RWJ Foundation has seeded a tremendous amount of activity out there, and Caring Connections has a real opportunity to build on what’s already been done,” Peralta notes. “My hope is Caring Connections can take the discussion of end-of-life care to the next external level, and that level for me has to do with policy-access issues and human-resource issues that I think get less attention but probably have a more profound long-term impact.”

By the end of April, there were more than 400 partners signed up with the program, with organizations in 49 states, including more than 300 hospices and palliative care organizations. Other partners include state and community coalitions and national groups, and they do not need to be NHPCO members in order to join, Brandt says.

The Kansas LIFE project had been involved in Rallying Points, which left a huge gap when it closed, Ogborn says. “Rallying Points was a really good recruiting tool, a nice carrot to offer people who were considering putting together a coalition and starting an ad hoc group but didn’t have anything they could sink their teeth into,” she says.

Since most of the community-based coalitions were operating on zero-dollar budgets, the seed money from Rallying Points was very helpful, Ogborn notes. While the Caring Communities initiative provides no seed money for individual coalitions, it does reinforce the work that already has been done by giving coalitions further purpose and ideas, she says. “I’ve sent out notification to our 31 Caring Communities, encouraging them to join as a partner,” Ogborn says. “For our coalitions, it gives them another feather in their caps to be part of something nationally.”

Likewise, Caring Connections was begun at the ideal time for hospices and end-of-life care coalitions in Nebraska because the state already had strong collaborations in place and was ready for the next step of community outreach, says Jonathan Krutz, MBA, executive director of the Nebraska Hospice and Palliative Care Association and the Nebraska Coalition for Compassionate Care in Lincoln. “We’ve built some strong relationships,” Krutz says. “And now we want to bring those people to the tables and say, ‘We know what Nebraskans are thinking about end-of-life issues, and we have a program that can raise awareness about things like advance care planning and hospice, and we’d like to work with you to get this across the state.’”

One initiative the Nebraska groups will implement under Caring Connections is to fund an education and outreach position for at least one year, Krutz says. The educator will work with hospice professionals to educate staff at assisted living facilities, area agencies on aging, Medicaid and Medicare carriers, and other organizations about end-of-life care, he explains. “Part of the campaign is to look at how we can get communities and our citizens to think ahead about the kind of situations they may face, so they’re not caught by surprise or making decisions in a crisis or finding themselves in a situation they don’t want to be in, which, sadly, often is what happens,” Krutz says.

According to a survey conducted two years ago, about one-third of Nebraskans have living wills, and many of those same people have health care power of attorney. The state groups plan to conduct another survey to see if that percentage has risen because of the Schiavo case, Krutz says.

The state of Nebraska ran out of its books about advance directives this year and then finally put the information on line. A separate website at www.respectmywishes.org had more than 200,000 downloads for its advance directives information, Krutz says.

Making decisions before a crisis occurs

While public interest still is high, it’s important for hospice coalitions to encourage the public to talk about their end-of-life care wishes with their loved ones so if a situation arises in which they can’t make decisions for themselves, their families will know what they desire, Krutz says. “Caring Connections gives us the tools to get out in the community in ways we have not done before,” he adds. “It gives us a common theme and a set of materials that fit that theme, and a dozen brochures and booklets we can use at different events, including stock PowerPoint presentations, fundraising suggestions, op-ed pieces, and press releases.”

One of the major goals of Caring Connections is to enhance consumer capacity building to recognize demand, Brandt says. “We know consumers need this information, and they need to make informed choices and make them in a timely manner,” Brandt says.

“Far too many people are reacting to things that happen to them in the midst of a crisis when they get a diagnosis,” she adds. “They get treatment, and then the family doctor says, ‘I think that’s all I can do,’ and two weeks later the patient is dead, and the family doesn’t know why they didn’t get hospice care sooner.”

Through the program’s outreach suggestions and tools, hospices can build relationships with the community and increase the public’s knowledge about hospice work, which eventually will lead to increases in early hospice referrals.

“That’s the payback to hospice, but it’s not necessarily the reason we got into this initiative,” Brandt says.