ABCD Exchange : Summer 2003 : Volunteer Hospices

Volunteer Hospices: Getting Back To The Roots Of Caring

Laura M. Schmidt

All-volunteer hospices can fill gaps in end-of-life care, especially for patients who do not qualify for Medicare benefits. Although the volunteer model does not offer medical care, it does provide an array of psychosocial services to dying people and their caregivers.

"Volunteer hospices meet the needs of those who may fall between the cracks of traditional hospice care," says Mary Ellen Walsh, director of the Volunteer Hospice Network. The Network, a national organization, represents more than 150 volunteer organizations -- and 10,000 volunteers -- throughout the United States. "We serve those who do not meet traditional hospice criteria, but yet need support to cope with their illness."

Hospice has always incorporated volunteerism into its framework. In fact, Medicare-certified hospices must include a volunteer component. While volunteers have been key team players in traditional medical hospices, the concept of a volunteer hospice expands on that role to create a separate, viable organization to serve seriously ill members of a community.

Who Needs Volunteer Hospices?

Traditional medical hospices work best for patients likely to die in a very short time, or who have a prognosis of less than six months. Medical advances in treating other eventually fatal illnesses (and so prolonging life, without curing illness, which is the case for heart failure and HIV/AIDS) leave many very sick patients outside the domain of medical hospice care. These patients may live for a year or more, but may still have very profound medical and psychosocial needs. Many may still be involved in treatment, which precludes their hospice eligibility. This gap in care makes the work of volunteer hospices vital to the lives of thousands of very sick people and their caregivers.

"With volunteer hospices, there is no 6-month criteria, and patients do not have to refuse curative treatment," says Walsh, who is affiliated with the Fox Valley Hospice in Geneva, Ill. "Volunteer hospices focus on those with life-threatening illnesses" rather than serving a more strictly defined patient group who have been classified as terminal.

Equally important is the funding mechanism that separates volunteer from medical hospices. Medical hospices receive payment from Medicare and other insurance companies; volunteer hospices do not charge for their services and programs. Instead, they rely on fundraising and community donations to cover costs.

Establishing A Volunteer Hospice

People have taken many different approaches to establishing volunteer hospices. Some have created stand-alone programs, while others work in cooperation with a healthcare agency. Hospice of Santa Barbara, Inc., one of the nation's oldest volunteer hospices, has gone through several strategies in its 30-year history. After an alliance with the Visiting Nurse Association left volunteers feeling "overmedicalized," the group reverted to its original configuration as a stand-alone, all-volunteer group. "We realized that our hospice had become 'medicalized', and dependent on third party insurers," says Executive Director Gail Rink. Wanting "to get back to its roots of helping people," the Hospice of Santa Barbara re-established itself solely as a volunteer hospice in 2001.

"The community benefits from the choices that volunteer hospices can provide," says Rink. The group now focuses on bereavement programs. Realizing that "not everyone dies in hospice care," the volunteers created comprehensive programs not only for those dying of a long illness, but also for those experiencing the sudden death of a loved one. Current programs include a perinatal loss program for grieving parents, poetry and journaling classes, and a special mentoring program, which trains young adults who have lost a parent to mentor young children who are currently grieving the death of a parent.

Some volunteer hospices collaborate with medical institutions as a basis for developing programs and services. Hospice Volunteers of Kennebec Valley (Maine), for example, through its affiliation with HealthReach Hospice, has created innovative programs to serve its rural community and 26 smaller communities throughout Maine. Although the volunteer hospice is self-supporting, it receives an administration fee from HealthReach Hospice.

"There is tremendous flexibility with being a volunteer hospice," says executive director Barbara Bell. One example of such flexibility is the hospice's medical equipment loan program, designed especially for patients who are not Medicare-eligible. Last year, the program lent 600 pieces of medical equipment, which helped offset costs for non-Medicare patients.

Some volunteer hospices, like Hospice Caring, Inc., of Maryland, are stand-alone operations. "After a friend of mine died years ago, I realized that there was something missing in [my community]," says Penny Gladhill, Hospice Caring's current Patient and Family Manager. "So I got together with some friends and decided to establish a volunteer hospice."

With the help of friends, Gladhill established Hospice Caring in the basement of her house. Later, the group moved to free office space in an area church. From there, "we focused our efforts on getting the word out," says Gladhill. Using a step-by-step approach, Hospice Caring's reputation grew slowly throughout the area, pulling in volunteers and community support along the way.

Today, Hospice Caring is a nonprofit organization that provides services from three offices throughout its area. By working with local home health agencies, hospitals, nursing homes and local medical hospices, Hospice Caring's reach now extends into several new programs, including the recent opening of the Hospice Caring's Cottage, a model day program for patients with life-threatening illnesses.

Looking to the Future

Volunteer hospices can now rely on new tools and resources being created to ensure their success. The Volunteer Section of the National Council of Hospice and Palliative Professionals has recently revised its Hospice Volunteer Program Resource Manual (NHPCO item number 711010). Published by the National Hospice and Palliative Care Organization (http://www.nhpco.org), the manual focuses on standards, training, position descriptions, competencies and evaluation, and policies and procedures related to establishing a volunteer hospice. The Volunteer Hospice Network (VHN) offers training and technical assistance to volunteer hospices. Contact VHN through the web: http://www.growthhouse.org/hospice/vhn.html

Tips on Starting a Volunteer Hospice

Choose the board of directors carefully. In addition to being knowledgeable about hospice, members must be well connected to the community for fundraising opportunities and providing outreach about hospice services.

Know your community. Focus groups, public meetings, local physician groups and religious institutions are just some of the avenues that may be explored to determine the community's needs.

Check into state licensing and regulation requirements. While some states don't require licensing for all-volunteer hospices, some do.

Be aware of conflict between medical and volunteer hospices. Just because medical and volunteer hospices share the same philosophy of care doesn't mean that there isn't a rivalry. This is particularly crucial in fundraising efforts where both hospice groups are competing for the same donor dollars.

Laura M. Schmidt is a Washington DC-based medical writer who specializes in end-of-life issues. She received her certificate in thanatology from Hood College.

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This content is provided by Americans for Better Care of the Dying. For more information, visit www.abcd-caring.org.

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