Comfort in Final Days: A Community Project

A Palliative Care team in Tavistock offers comfort and respite to terminally ill patients and their families 

By Carolyn Wilker

Terminally ill patients in Tavistock nursing homes are discovering they will be cared for when a cure is no longer possible. Tavistock and Area Palliative Care volunteers will be there to assist with caring hearts and listening ears.

Larry Beresford, author of The Hospice Handbook says of volunteer based systems, "They may not have the resources to provide the full range of hospice services, but the special caring and spirit that comes from the work of volunteers is hard to beat."

Tavistock's team most closely resembles the volunteer-intensive hospice model, without a building of its own. This rural Ontario community, situated approximately 25 kilometers southwest of Kitchener-Waterloo, offers the palliative care option to residents in its three nursing homes, to patients in area hospitals where there is no active program, and to individuals in their own homes.

Need for palliative care is recognized

Early in 1988, Kathy Martinson, Activity Director of People Care Centre in Tavistock, recognized a need in the community for palliative care for the elderly. She expressed the desire for the nursing homes to work together. Later that year, Martinson attended Trinity Lutheran's Church and Society Committee meeting where she promoted an upcoming dinner and speaker from Fanshawe College in London on the topic of palliative care.

As Lutheran Pastor Bonnie Scharf ministered to her parishioners from Trinity in the local nursing homes, she "was aware of many lonely and terminally ill residents who had no family." How would those people get the extra care they needed?

Palliative Care Training Program

In the spring of 1989, the Evangelical Lutheran Women of Trinity hosted a community meeting with guest speaker Florence Gunderman. Gunderman, head of the palliative care area of Stratford General Hospital, was prepared to teach Level 1 training for volunteers of a proposed palliative care program. Pastor Scharf gathered people from her congregation who would be suited to the work. An advertisement in the local paper invited other community members to participate. By July, twenty people had signed up for the training program.

On October 14, Gunderman began weekly training sessions. Education included the definition of palliative care, caring for seniors, and what is expected of volunteers. Of the twenty persons who received certification, eleven continued as charter members. For the others, the training had been valuable and contributed to personal growth.

Each member of the new team was paired with a resident of a nursing home for social palliative care, a level of care for those with chronic health problems, but not facing immediate death.

"We soon realized our abilities went beyond social contact," volunteer coordinator Lyla Wilhelm says. Much more was required as the volunteers saw lonely people dying with no one to ease their passing. From there, in-depth training was extended to include Alzheimer's, Huntington's, and Parkinson's diseases, cancer, and listening skills.

"We learned that besides physical care, touch is important," says Wilhelm. "We watch for facial expressions, and what patients say with their hands. We must be very sensitive to reactions in a person who is unable to speak." Wilhelm still recalls a ninety-two-year-old woman she sat with. The woman had not spoken to nursing home staff or her family in days. "I thought she was sleeping, but she surprised me. She told me it was good to have a hand to hold."

Members of the Tavistock team come from every walk of life. There is a wealth of experience among the twenty plus volunteers in teaching, ministry, nursing, homemaking, farming, and banking. Among these volunteers are a few who wanted a career in nursing, but did not have the opportunity.

Each time training programs are advertised, two or three new volunteers are usually recruited. They are invited to take the course for initial certification. Training sessions are ongoing and weekly meetings are organized educational events with invited speakers or the use of videotapes.

Burnout happens among volunteers and professionals alike. This is where 'care of the caregiver' comes in. If a volunteer is unable to continue in this role, he/she is encouraged to take time off. If there is a death in the family, that person may not be able to meet the patient's need for comfort. Usually a volunteer knows when a break is needed.

Philosophy of the program

The philosophy of the palliative care program is based on The Dying Person's Bill of Rights which safeguards the right of a patient to be treated as a living human being until death, to maintain a sense of hopefulness, and to be free from pain. The patient has the right to expect continuing medical and nursing attention when the 'cure goal' is changed to a 'comfort goal,' and to participate in decisions regarding his care. The patient must be allowed to express feelings about death in her own way.

Eva McLaren, Assistant Director of Resident Care at the People Care facility in Tavistock, affirmed the philosophy of the program "that no terminally ill patient should die alone." McLaren is also a member of the team. When care is needed, she gets in touch with the Coordinator of the palliative care program and shares needed information about the patient, while respecting confidentiality. The Coordinator will then talk to the patient and the family.

How the process works

The process of deciding who needs palliative care usually begins with a doctor. He will recommend palliative care to a patient who has a terminal illness. Then a family member or the nursing home staff contacts the palliative care organization. At this time, the Volunteer Coordinator talks to the family about their expectations and requests that the family members take time to sit with their patient. Volunteers will fill in times when the family cannot be there.

When the Coordinator receives the call and is informed which hours of the day or night need to be covered, she calls three people on her list. Those three people, in turn, phone the people on their lists, to find out who is available. The Coordinator remains near the phone until all arrangements have been made, then a schedule is set up for all participating volunteers.

Since 1969 when McLaren began working for People Care, admission forms have included questions about the patient's spiritual life, such as the patient's denomination and home church. With this information, staff or volunteers can make the appropriate call.

Value of the volunteers

McLaren speaks about the support the nursing homes and community get from the palliative care team. "They are good listeners and compassionate," says McLaren who knows many of the volunteers as friends. "They often come on short notice, between family commitments or jobs." Staff take care of residents' physical needs like bathing and bedding changes, but often it is the volunteer who will hold the hand of a patient.

The vigil is the time that family and volunteers take turns sitting with the patient. The patients want someone at their bedside, and their families are appreciative of the program. McLaren said that volunteers "provide the patient and family with comfort, and treat residents with dignity and respect." She spoke of thank-you notes from families. "They praise the efforts of the team through the dying and grieving process."

Joyce Penney, administrator of Bonnie Brae Health Care, echoes similar sentiments and appreciates what the volunteers do. "We tend to save the care (vigil) until the patient is in a palliative situation, so we don't abuse the volunteer's services," she says. And she highlights the importance of volunteers and staff working together. "We have a process of sharing mutual goals for the best quality care of our residents. We have a great relationship among our staff; volunteers can come to staff members whenever there is a need."

Families are grateful to know that someone is with their parent or kin, to provide comfort when they are unable to because of work hours, driving distance, or perhaps a difficult past. The patient's care is enhanced by the volunteer's additional attention, by spiritual and hands-on care. Sometimes the volunteer will read scriptures from the Bible, or from other books. "Residents truly want the company and often welcome a back rub or shoulder massage," says Penney. "The program is comforting to the patients."

It is important for family members to spend time with their loved one and to provide comfort in the patient's last hours. 'Goodbyes' need to be expressed by both the patient and the surviving family members. But in the absence of family, volunteers sit with the patient. They are aware of 'living wills' and 'do not resuscitate' orders, and only assist with funeral arrangements if requested. When the patient needs to talk about final wishes, funeral arrangements, or concerns about their family not coming, just being there and listening is sometimes all that is required.

Outstanding Achievement Award for Voluntarism

Recognizing the significant impact the volunteers have had on terminally ill people and their families, the group was nominated by the staff of Bonnie Brae Health Care Centre for the Outstanding Achievement Award for Voluntarism in Ontario. Marilyn Mushibski, Parliamentary Assistant to the Premier, presented the award to the 23-member team on March 24, 1999.

Pastor Scharf was delighted to hear that the program is still running and being of service to people in need. Their motto reflects their purpose: "When healing is no longer feasible. . . caring makes the difference."

Carolyn Wilker is a freelance writer and lives with her husband and youngest daughter in Kitchener, Ontario.