Volunteerism and Healing
Community Characterize
Excellence in End-of-Life Care
by
Bruce Jennings, Senior Research Scholar
The Hastings Center
| The Circle of Life Award is
given by the American Hospital Association to programs in
palliative and end-of-life care that demonstrate
innovation, creativity, and excellence in quality of care.
These programs are diverse in their approaches and
accomplishments, but for this year's winners two themes
stand out, volunteerism and the importance of the
community in care of the dying. The 2000 Circle of Life Award recipients 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 Sun coast. Each of these programs is distinguished by its commitment to volunteerism and community partnership in the care-giving 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 fabric of meaning 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, LA, many who are themselves serving life sentences take part in a program of hospice care giving for fellow inmates who are dying. For these volunteers the experiences 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 the caregiver. 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 Sun coast, 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 Sun coast 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 civic intergenerational respect that our aging society urgently needs to cultivate in the decades ahead. 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? They have gone the way of the Dodo bird.
But in hospice programs all across the country, volunteer
service and care giving 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 devote
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, a 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 community fabric is woven. Opinions expressed in VIEWPOINT are not necessarily those of the New York Citizens’ Committee on Health Care Decisions, Inc. |
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