Volunteers help patients prepare for death
Telling and preserving personal stories
There is so much to be discovered about oneself during the dying process. Caregivers can play a pivotal role in helping patients examine and preserve their unique identities and, in turn, can help them "die well."
Health care professionals are finding that it not only adds to the patient’s comfortable death, but it also can alleviate family conflicts that can lead to ethical dilemmas. The essence of an institutional ethics committee’s role in bedside practice is to help patients and families find this comfort.
"The fundamental nature of dying is personal, not medical," says Ira Byock, MD, president of the Gainesville, FL-based American Academy of Hospice and Palliative Medicine. Byock also is assistant hospice medical director for Partners Hospice and director of The Palliative Care Service, both in Missoula, MT. (Byock is a new member of the Medical Ethics Advisor editorial board. See biographical information, p. 96.)
"Today we define a good death’ by what we fear and what we want to avoid," says Byock. "Instead we should focus on stories of people’s dying that have gone well on seeing, feeling, and hearing the richness and caring of this human experience."
Byock has developed a set of developmental landmarks relevant to the end of life. (See insert.) The landmarks represent universal needs and opportunities that patients have as they die, he says. Clinicians can use them to understand the experience of the patient and family and recommend interventions.
Unlike a physical pain brought on by a deadly disease, these needs have no medical interventions. One of the first is a sense of meaning about one’s own life.1,2 The work of a unique group of volunteers is now a powerful example.
Creative approaches to dying
The Creativity and Discovery Corps is an all-volunteer organization just initiated in the Washington, DC, area. Its goal is to develop groups of similar volunteers across the country with skills and interests in the humanities, history, journalism, and arts. The volunteers bring their disciplines together to help patients who are dying "create and discover their story," says Barbara Soniat, MSW, PhD, assistant professor of health care sciences at George Washington University in Washington, DC, and co-founder of the Creativity and Discovery Corps.
Recently, an elderly African American woman with no family came under the care of George Washington’s department of aging services. Her major source of anxiety was a feeling that no one would know who she had been or remember her, says Soniat. The woman had a trunk full of letters, artifacts, and even toys she had as a child.
Working with volunteers from the local arts community, Soniat invited community museums to look through the woman’s belongings (with her permission). The coordinator of the history section of the African American Fashion Museum in Washington expressed an interest in many of her things. The coordinator visited the woman and did an audio history with her.
In a collaborative effort between the museum and the hospital, an exhibit of this woman’s personal belongings and those of several other George Washington patients identified with similar "stories" were displayed in an exhibit called "material cultures." Now the Anacostia Museum, part of the Smithsonian Institution, is taking all of these patients’ artifacts on a nationwide tour as a segment of an exhibit on African American culture during the last 150 years. In addition, all of the woman’s possessions have been donated permanently to the Smithsonian.
One visitor to the art exhibit was a schoolmate of the woman. Now the old friendship has emerged and the two will spend time with each other during their final years. "This is therapy that no doctor could have prescribed," Soniat says.
Several other projects are under way, matching volunteers with patients. A graduate student in the arts is helping a woman organize and preserve a doll collection. A woman who served in the U.S. Army WAVES (Women Accepted for Volunteer Emergency Service) during World War II wants a volunteer to help research her history.
Soniat says she is working on the development of a manual for setting up a volunteer corps and affiliation agreements for chapters across the country. One possible chapter has been seeded in California.
There is little doubt that this volunteer effort is changing the dying experience for its participants and offering a therapeutic benefit. The fact that dying is fundamentally a personal experience seems obvious, says Byock.
The challenge Byock and Soniat offer to health care professionals including ethics committee members is to go beyond a medical model that relies on problem solving when it comes to palliative care.
"The challenge for palliative care clinicians is to respond appropriately to the symptoms and physiological derangements of the dying process while not allowing the medical aspects of the patient’s situation to obscure the fundamental, profoundly personal nature of the experience for those going through it," Byock says.
References
1. Byock I. Beyond symptom management: Growth and development at the end of life. Eur J Palliative Care 1996; 3:125-130.
2. Byock I. The nature of suffering and the nature of opportunity at the end of life. Clin Geriatr Med 1996; 12:237-251.
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