Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

[Citation: Jennings, B. Volunteerism and Healing Community Characterize Excellence in End-of-Life Care. Innovations in End-of-Life Care, 2000;2(3), www.edc.org/lastacts]

The poet John Donne once said that the death of any individual affects the entire community. If the poet’s wisdom tells us that dying should not be seen as a purely personal, private matter, then surely the nature of the care dying persons receive is not merely private (familial or professional) either. This issue of Innovations presents brief summaries of nine outstanding programs honored by the American Hospital Association’s Circle of Life Award. These programs are diverse in their approaches and accomplishments, but in reviewing them two themes stand out, especially for the three award winners. These themes are volunteerism and the importance of the community in care of the dying.

The Circle of Life Award winners are: the Franciscan Health System-West Program on Improving Care through the End of Life, the Louisiana State Penitentiary Hospice Program, and the Hospice of the Florida Suncoast. Each of these programs is distinguished by its commitment to volunteerism and community partnership in the caregiving process. Even more than that, each is committed to the difficult task of creating what we might call "healing community." By "healing," in the hospice context, I do not mean curing or extending the duration of life. Healing here means keeping a person whole or intact by sustaining the community of connection and commitment that surrounds the person. Healing means sustaining and supporting the integrity of the dying individual as a person, as a member of a meaningful community that supports living with, and in spite of, the dying process.

For the Franciscan System-West in Gig Harbor, Washington, hospice volunteerism is linked explicitly to the vocation of a lay healing ministry within the religious community of the church, as well as to an opportunity for service in the secular community. This reminds us that witness (being present with) and service are integral parts of quality end-of-life care, and that the support provided to the dying by family and professionals is in need of supplement and reinforcement by the broader healing community as a whole.

In the Louisiana State Penitentiary in Angola, Louisiana, many who are themselves serving life-sentences take part in a program of hospice caregiving for fellow inmates who are dying. The experience of providing care to—and being present for—a dying person has a profound spiritual and emotional effect on both the person being cared for and on the caregivers themselves. Many of these volunteers have lived violent and troubled lives. Inmate volunteerism at Angola reminds us vividly of the power of healing community to touch spirits and to reach out across the chasm of alienation, anger, suspicion, and despair. As it calls forth both volunteerism and healing community, hospice at Angola reminds us that it is not only bodies and persons that need care at the end of life, but also relationships and institutions.

Finally, the Hospice of the Florida Suncoast, located in the Tampa Bay area and one of the leading hospice programs in the country, has seen its volunteer program grow from thirty people in 1976 to 2,600 volunteers today. It has a special program for teen volunteers and a program of organized support based in a coalition of twenty-two local faith communities. A national leader in this regard, the Hospice of the Florida Suncoast has shown that the mission of hospice encompasses not only healthcare but also community building and change. It has built bridges as breathtaking as the magnificent span straddling Tampa Bay, bridges between the civil society and the many faith communities in the area, and bridges across the generations. The importance of the latter cannot be overstressed because it breaks down the barriers that so often isolate the young from the old and from the inevitable reality of dying and death. Hospice volunteerism among teens today can build tomorrow's citizenship and intergenerational civic respect that our aging society urgently needs to cultivate in the decades ahead.

Volunteerism and healing community in hospice are not new. Dating back to the 1970s, the hospice movement in the United States was distinctive. It has never been simply a mode of health care delivery, but has always been a social philosophy and a grassroots movement as well. Hospice does not merely do different things in end-of-life care, it aims to do things differently, with its own special spirit and vision. That spirit may have matured and become somewhat more restrained in its enthusiasm in the last twenty-five years, but it has not disappeared.

Indeed, it is not an exaggeration to say that volunteerism and a community orientation have always been at the center of the hospice mission, and remain so today. What has happened to candy stripers or the Ladies Auxiliary in most hospitals? Gone the way of the Dodo bird. But in hospice programs all across the country, volunteer service and caregiving are alive and well. Every day tens of thousands of hospice volunteers visit dying patients and their families to talk, read aloud, listen to family stories and reminiscences, or just to sit quietly to be there with someone who needs not to be alone. Every day professional hospice staff devotes considerable time and energy to maintaining the hospice’s volunteer program, to recruiting, training, scheduling, and providing advice. Volunteerism was thought important enough to the spirit of hospice that the early pioneers who crafted the Medicare Hospice Benefit in 1983 included a provision requiring it in order for a hospice agency to qualify for federal funds.

The care of the dying is a communal, civic responsibility. No matter how sophisticated palliative medicine becomes, and no matter how much we rely on government funds for paid, professional services, the question of the humane, giving quality of end-of-life care will remain. It is a fundamental test of the health of the civic and moral fabric of our communities. Volunteerism is its symbol and manifestation. If we lose the spirit of volunteerism, the traditional soul of hospice, we will break the loom upon which that fabric is woven.

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