One of the more enlightened aspects of the Medicare Hospice Benefit is the requirement for certified hospices to have volunteer programs. Because of this, volunteers have become an integral part of Hospice culture. Let’s consider the role of the volunteer in end-of-life care.
Dying is both an intensely personal and yet public experience. Most dying people are dependent on others for medical care and basic support. In the past, the responsibility for such care fell first and foremost on the family, which was in turn supported by the larger community. The provision of medical care by professionals was at most an ancillary service. Today, much care is provided by professionals. Families and the community too often have little, if any, role - except in hospice, where families play a central role and “community” manifests in the work of dedicated hospice volunteers.
It is too easy, I think, for those of us who work in hospice and palliative care professionally to take hospice volunteers lightly. I know I’ve been guilty of that far too often. After all, we are busy about the work of demonstrating the value of hospice and palliative care to our medical colleagues. Yet, considered through the lens of volunteerism, we can glimpse a more ancient truth – that care for the dying is at its roots a communal activity and responsibility.
It is not hard to imagine the value a volunteer can bring to the care of the dying. They can help with all the nitty-gritty work that needs attention, whether it be feeding, cleaning, or envelope stuffing. Beyond these very important details, the volunteer is able to do some things that neither the family nor the professionals can do. Sometimes, for the dying person, the family is too close and the professionals too distant. The volunteer can provide perspective to patients, families, and clinicians precisely because they are betwixt and between – not dying, not family, not professional, but still important members of the tribe with a vested interest in the unfolding drama.
One hundred years ago, wisdom in the care of the dying was gained at the family bedside and shared through communal service. Today, much of this wisdom has been lost through the medicalization of dying. One of the great benefits of the hospice movement has been a reclamation of this tradition of service. Families and volunteers are critical not only to the care of individuals, but also to the rebuilding of this communal wisdom, through shared stories and experiences.
Of course, the best way to participate in this process is to volunteer and learn through experience. Volunteers (and families) may also be aided by some books that address hospice volunteering. Here, I’ll recommend two: When Autumn Comes – creating compassionate care for the dying, by Mary Jo Bennett, and At Home With Dying – A Zen Hospice Approach, by Merrill Collett.
The second edition of When Autumn Comes has just been published. This book revolves around individual stories of volunteering by the author. Bennett shares her own inner struggles and practical advice for caregivers. For example, volunteers are inevitably drawn into the dramas of their patients and families. A challenge for all caregivers is how to participate authentically and yet still be aware of certain role boundaries. Like so many volunteers, her journey began with a personal loss, as recounted in the book’s first chapter. At Home with Dying takes a different approach. The author, a student of Zen Buddhism, volunteered at the now famous Zen Hospice Project. The book moves freely from discourses on spiritual aspects of caregiving to very practical advice, as epitomized in the chapter title, The Tao of eating and elimination. While grounded in the spiritual practice of Zen, the nature of the commentary and advice would be valued, I think, by folks of other spiritual persuasions.
In summary, I’d like to say thank you to all the great people who have taken the time to volunteer (in hospice and elsewhere). Your actions really make a difference and give me hope for the future.