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

Personal Reflections of a Palliative Care Volunteer

Rosemary Ashford, BSN, MA

Editors' Note: The Balm of Gilead is a comprehensive program for end-of-life care in Birmingham, Alabama, supported in part through funding from The Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Initiative. Cooper Green Hospital and the Jefferson County Department of Health are partners in the program. This program includes a ten-bed dedicated inpatient palliative care unit at Cooper Green Hospital, which opened in November 1998. In collaboration with the hospice program of the Jefferson County Department of Health, the Balm of Gilead program also offers home-based services to persons near the end of life. The two principle goals of this program are: 1) to integrate acute and palliative care throughout Jefferson County, and 2) to build and coordinate community resources including religious organizations to provide volunteers and resources to supplement professional efforts to offer this care.

One distinctive feature of this program has been the CareSharing Initiative, which is the community education and volunteer arm of the program. They have developed Community Care teams by engaging church, service and neighborhood groups to volunteer to serve dying persons and their families, regardless of whether they are hospice patients or not. The CareSharing Initiative recruited 1,862 hours of volunteer effort contributed by 108 volunteers during the first year of The Balm of Gilead. These volunteers included eight community-based volunteer teams, five church teams from four denominations, one neighborhood team and two teams of first and second-year medical students as well as 20 professionals from a wide range of fields. Thirteen community teams and more than 200 volunteers served patients during the second year. Here Rosemary Ashford, a key volunteer leader, describes the path of her own engagement with the CareSharing Initiative.[Citation: Ashford R. Personal reflection of a palliative care volunteer. Innovations in End-of-Life Care. 2001;3(5), www.edc.org/lastacts]

During my career as a registered nurse, while working in the hospital setting, I often toiled with many negative emotions regarding the process of death and dying. Those emotions included fear, apprehension, loneliness, and sorrow. The feeling of loneliness was the most troublesome concern for me. I observed terminally ill patients being placed at the end of the hall in the hospital with few or no visitors. Even the nursing staff was reluctant to frequent the rooms. I remember thinking how lonely an experience this must have been for these patients facing their final days of life.

In 1992, the fear and mystique surrounding death and dying became a reality in my life. My dear mother was diagnosed with inoperable lung cancer. She was not even a candidate for chemotherapy or radiation therapy. Every negative emotion that I had experienced while nursing patients with cancer and other terminal illnesses was evoked by this diagnosis.

As time progressed while taking care of my mother, my greatest observation was the valuable role that faith in God and the support of family and friends played during this dying process. I began to realize the importance of living one day at a time, surrounded by loved ones.

Having family and friends present to pray with you, pamper you, play music, read books, poetry, letters, and so forth, or just to chat about old times, provided tremendous emotional support to my mother. This truly was the most significant reason why my mother was able to experience a good quality of life as she faced her final days on earth.

Upon hearing news of the opening of the unique Balm of Gilead Inpatient Palliative Care Unit at Cooper Green Hospital, I became ecstatic. Realizing that many of the patients served on this unit would be from disadvantaged backgrounds and would have little or maybe no family support system, I felt compelled to volunteer. From my own experience, I knew the importance of the sharing of "presence," and I realized that this was a spiritual calling from God to give of myself. As part of this calling, I endeavored to invite others to join "the Balm" as volunteers. These persons included my friends, my church members, and members of my service organization, The Links, Inc. I informed them that this was a special opportunity to serve others simply by being with them. All were very receptive and, after visiting patients on the Gilead unit, conversing and exchanging views with the staff members and other volunteers, both my congregation and The Links were convinced that this was a perfect program to adopt for volunteer service. This decision led to the sponsorship by my church, Sixth Avenue Baptist Church, of one palliative care room on the Balm of Gilead unit; the sponsorship by my service organization, The Links, Inc., of one hospice room in a recently approved expansion; and the formation by both groups of Care Teams to serve their respective rooms.

The factors that I, as an African American, feel have influenced our people to embrace the opportunity to become involved and volunteer at the Balm of Gilead are:

• Almost everyone has had a loved one who is battling or has succumbed to some type of terminal illness.
• Many African Americans have come from disadvantaged backgrounds, in which sometimes
• family support is lacking when the presence of family members is most required. This lack of support can be attributed to financial constraints, the necessity to work, lack of acceptance, or poor family relations due to other family dynamics. As African Americans, we are especially sensitive to these "real people" problems and obstacles.
• The Balm of Gilead offered our church a new and different type of opportunity to serve.
• In my church, there appears to be a resurgence of interest in and concern for getting back to the basics of Christianity: "Love thy neighbor and visit the sick."
• The physicians, nursing staff, program directors, and educators involved in the organization and operation of the Balm of Gilead Program exemplify a personal interest and true compassion for persons facing life's end. This commitment is apparent by their attitude, presentations, enthusiasm, and sincerity. These persons are truly advocating for a program that they are passionate about and it shows. Their message has filtered throughout the African American and the Caucasian communities in Birmingham. These attitudes have been a tremendous force in bringing together a great cross-section of volunteers for a common good.
• Talking with patients on the Gilead unit, listening to them, and observing their expressions of gratitude and joy at having someone visit and show concern for them and their families have all led me to realize the great value of volunteers to this program.
• Because of our history of being discriminated against and excluded, African Americans tend to be especially sensitive and to possess an uncanny ability to determine when non-African Americans are being truly sincere in relating to us. Apparently, from the large number of African American volunteers on the Gilead unit, the message of sincerity has penetrated our community. This genuine care is making African Americans in our area more receptive to the idea of palliative care, as well as more willing to volunteer their services to help others near the end of life. We are delighted to know that we are playing a major role in assisting not only our people, but all people facing their last days of life.

Because of my experiences as a Care Team Member for the patients at the Balm of Gilead Unit at Cooper Green Hospital, I have truly received more than I have given. Observing the patients' strong faith, lively spirits, and brave acceptance of their conditions, I have changed my perspective on death and dying. My fear of the dying process has diminished significantly. Now I view dying as a period of the life cycle during which one might experience the highest quality of life. Loneliness is something patients do not appear to encounter on the Gilead unit. This is comforting to me. It brings me back to the importance of the great support of staff, family, friends, and volunteers. We all are valuable in assisting others to experience "living" during their final days of life.

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