Volunteer hospices follow different path

Eschewing Medicare breaks down barriers

As Medicare-certified hospices wrestle with the challenges of compliance with Medicare regulations and with coverage and eligibility determinations by fiscal intermediaries, one segment of the hospice movement remains largely free from these issues: volunteer-intensive hospices.

While the operation of volunteer hospices is significantly shaped and limited by provisions in state hospice licensure laws, so long as they do not seek reimbursement from Medicare, they don't have to jump through Medicare's hoops. And that prospect might seem pretty attractive these days to certified hospice managers struggling to operate in an increasingly strict regulatory environment.

"The volunteer hospice community is very diverse; that's encouraged," says Rhoda Eagan, project leader of the Volunteer Hospice Network, which is sponsored by the Hospice Association of America. Some volunteer hospices have found ways to qualify for Medicare using volunteer staff, although most have not. Others have developed relationships with certified hospices to provide the volunteer components of the benefit. Many volunteer hospices are small, close-knit organizations, but some have grown quite large.

Eagan's volunteer network will hold a two-day breakout session for volunteer hospices again this year at the National Association of Home Care/ Hospice Association of America conference in Atlanta, Oct. 5 and 6. She reports that she is exploring various ways to help subsidize the travel costs of hospice directors with limited budgets who want to attend.

Dilemmas on both sides of the divide

John Herman, a doctoral candidate in sociology at the University of Virginia, in Charlottesville, will be surveying volunteer hospice programs, using a grant from the Open Society Institute of New York City to support his research. He will also be site-visiting six volunteer hospices and surveying the volunteers of these programs. Herman previously surveyed volunteers in certified hospices, but excluded volunteer-intensive agencies from that study. "Rhoda Eagan called me to task on that. So the new project is designed to round out the picture."

"When I talked with certified programs, they saw volunteer hospices as an anachronism. There was this confidence in the NHO and in the industry that there was nothing but rosy times ahead, and hospice would just keep on growing. Now there's a little more humility in the industry, having run up against the limits of the Medicare hospice benefit," he relates.

Herman also spoke with the board of directors of a volunteer hospice, which had made a deliberate decision to remain volunteer-intensive and not seek Medicare certification, and he became curious to learn why. Among the reasons he uncovered were a purity of motive for people involved in volunteer hospices, and "a discomfort with co-mingling volunteerism and mission with profit-making or even salary-making." His project aims to answer questions such as: How are volunteer hospices organized? How does their package of services differ from certified programs? Who are their volunteers? It will also explore how these agencies are partnering with other organizations - including certified hospices.

"There are forceful arguments to be made against volunteer hospices, and philosophical conundrums on both sides of the issue," Herman says. Certified hospices point out that some volunteer hospices have abdicated hospice's primary responsibility, to assure the provision of specialized, highly skilled expertise in terminal pain and symptom management, when they leave hands-on care to generalized providers such as home health agencies. Certified programs also say the public is entitled to the Medicare benefit, including its coverage of drugs and medical supplies.

"One of the things I find most attractive about volunteer hospices is they provide the opportunity to serve people who would fall outside of the Medicare hospice benefit, who have been discharged from the benefit or who are still getting curative treatment," he adds. As certified hospices run into regulatory and anti-kickback barriers to providing free or bridge services to patients not on the hospice benefit, forming joint ventures with volunteer hospices may be one way to meet this need within the rules.

At least 10 volunteer hospice programs in this country have launched or are planning residence programs. Coming Home, a volunteer group in Ocean City, NJ, formed to establish a hospice residence, plans this summer to rent a beach house. Terminally ill patients and families will get a one-week vacation by the sea, with volunteers doing the cooking, housecleaning, and supportive services.

Two other noteworthy examples of applying volunteer concepts to unique local needs are tiny Hospice Care of Nantucket, MA, and huge Hospice of Windsor, in Ontario, Canada. Nantucket is a small, 45-square-mile island with a year-round population of 7,000, which swells to 40,000 in the summer. The island has one 30-bed hospital, a home health agency owned by the hospital, and one nursing home, says hospice director Charlene Thurston, RN, ANP. This close-knit community has promoted the development of an integrated model of end-of-life care built around the volunteer-intensive, licensed, accredited but not Medicare-certified hospice.

Sharing the caring

"When this hospice was formed 15 years ago, it was agreed that it would make sense to locate it within the hospital organization," in order to share staff and promote continuity of care and cross-fertilization, Thurston reports. The hospice team emphasizes a concept of "sharing the caring," by working closely with the home health department, the nursing home, inpatient hospital staff, and the island's five physicians.

The hospice also offers a volunteer-run, social-model day care program and provides a resource center, a pain project, grief counseling, school consultation, and other forms of community outreach and education. The hospice now has two part-time paid staff and 22 volunteers, drawing on the hospital, home health agency, and local churches for the other members of its interdisciplinary team.

"If we truly are concerned about changing end-of-life care in this country, let's start with the question, `What does your community need?'" Thurston says. In Nantucket, "the hospice nurse's role is pivotal in our institution. It's important to have hospice represented and positioned at the table," whenever care planning is done, and to have good relationships with physicians and hospital staff. "Here, it's easy to do that."

The hospice has served more than 80% of cancer deaths on the island over the past three years, and one-third of patients dying from any cause. It also conducts regular quality improvement studies looking at, for example, pain, psychosocial support, and bowel management. The hospice's 1998 Annual Performance Report tabulates documented responses in such areas as assessment of pain on admission, initiation of bowel protocol when appropriate, and timely new pain intervention if the pain score is greater than three. One identified area of concern, spiritual care, led to an inservice presentation on spiritual needs of the dying.

"One of the best things we've done is to share the holistic hospice philosophy, not just treating symptoms but looking at the whole person and family as a unit of care," Thurston says. "We've actually changed the medical culture, so you see inpatient staff paying attention to other patients in a much more holistic way." An example is when emergency room staff called Thurston to come down to the ER to help with the family of a patient who died while jogging.

Although Nantucket's intimate milieu promotes such an approach, "any hospice could try to pull together the various health care organizations in its community to talk about how to improve end-of-life care for the community," Thurston asserts. "But I understand the problem - you have to figure out who has the leverage."

How to mobilize 1,200 volunteers

As reported in Hospice Management Advisor (March 1998, pp. 37-39), most Canadian hospices more closely resemble this country's volunteer hospice model, while medical center-based palliative care programs tend to provide the hands-on professional care. But volunteer-intensive Hospice of Windsor now deploys 1,200 patient care volunteers, with a paid staff of 24 to provide volunteer coordination, patient assessments, administrative functions, and liaisons with other agencies.

The hospice's services also include a day hospice program, a new specialized volunteer component utilizing volunteers with a nursing background, and a partnership with Canadian Mental Health Services for bereavement follow-up, says Executive Director Carol Derbyshire. The hospice's office is located in a former school, and it is exploring the possibility of respite beds.

"Is 1,200 volunteers a lot to manage? Yes. But our volunteer program is the heart and soul of the whole organization. This agency could carry on if all the paid staff left, because the volunteer component is so strong," Derbyshire says. The agency also works collaboratively with other home-based care providers, following an effort seven or eight years ago to overcome territoriality issues. Representatives from the different providers convened at a local hospital to talk about AIDS care needs. "I remember, as we went around the room and described what we did, we were embarrassed at all the duplication. So we decided, `Let's clean it up,'" she reports.

Put yourself in their shoes

Hospice of Windsor advertised for its first volunteer training program back in 1979, but word of mouth has proved adequate since then. The trick to retaining its huge volunteer pool, Derbyshire says, is to ask the question: "If you were going out as a volunteer, what would you want? You'd want to know you're appreciated. If you needed something, the organization would be there for you, and there would be respect for the gifts you bring to the table. Plus, you'd want to feel connected. We keep our volunteers updated constantly, letting them know what's happening before the public does. And we have a real open-door policy." Volunteer team leaders place phone calls to the other volunteers, and social workers are available for volunteers who are having difficulty or need a little extra guidance, Derbyshire says. However, as many U.S. hospices have discovered, the volunteer support groups are not well-attended.

Derbyshire, who used to be the agency's volunteer coordinator, reports that she struggled to find ways to reward the volunteers, who didn't seem interested in wine-and-cheese events. So she asked them what they wanted, and they replied, "`Give us as much education as you can.' They want to stay current, because patients and families expect them to have a solid knowledge base. So that's what we focus on: workshops and seminars, bringing in good speakers," she explains. "It's rather altruistic to think people will do this out of the goodness of their hearts. They need to get something out of it. So we offer training to enhance their skills, or give them totally new skills."