Frustration and Grief Energize Palliative Care Nurse

Supportive Voice Vol. 11 No. 1 Winter 2006
by Anne Cabanas, RN

Ms. Cabanas began the palliative care program at Mercy Franciscan Terrace, a long-term care facility providing independent living, assisted-living, and nursing care in Cincinnati, Ohio. The facility is a member of Mercy Health Partners. In addition to serving as the facility's palliative care nurse, Ms. Cabanas is the assisted-living manager and the skin resource nurse. She received the 2005 Dean's Award from the University of Cincinnati's Florence Nightingale Awards for her work in reducing pressure ulcers and palliative care.

My father had terminal bone cancer. He was a quiet, unassuming man who loved nature and his garden. He wanted to live as long as he could. He had lived all of his life in a small town at the foot of the Blue Ridge Mountains but chose to drive one hour away to Duke University Hospital for experimental treatment. Two years after he began the treatment, he went to see the primary physician in his small town and arrested on the exam table.

He was rushed to the hospital and regained consciousness; all 10 of his children were called to come home. We had a precious opportunity to interact with Daddy at this time; he even visited with his dog "Newt" whom we sneaked into the hospital.

After several days, Daddy began having terrific pain, headaches, and muscle aches, and asked for pain medication. He gradually became unable to speak. As a practicing nurse in a long-term care facility, I could tell he was suffering by his restlessness and grimacing. When I asked the nurses for pain medication, their response was, "He must ask for pain medication by squeezing our hands." I became more and more frustrated as I watched my father dying in pain.

We could not reach his physician. I begged my husband, a physician in Ohio, for any kind of intervention or help. After many tearful arguments and interactions with the nurses, a resident in the hospital ordered morphine to be given IV. My father died early the next morning. I mourned the loss of this wonderful father, felt my inadequacy in not being able to help him at this critical time, and agonized at the ignorance of the staff in caring for the dying.

I returned to my work at Mercy Franciscan Terrace carrying a heavy load of grief and frustration; I was unable to resolve my pain. There had been no hospice in this small town, no palliative care team, no one to turn to for help. I walked miles in the evenings reliving the horror of my father's death.

Six months after Daddy died, I received a call from an administrator at Mercy Franciscan Terrace asking if I would like to serve on a task force to form a palliative care program to improve the quality of care for dying residents. It was an answer to my prayers, a way to help others even though I had not been able to help my own father. I knew Daddy would have been pleased.

Meeting under the excellent leadership of Mary Davidson, the palliative care coordinator for Mercy Health System, and Sr. Mary Lou Averbeck, RSM, the regional director of spiritual care, a group of dedicated nurses came together to form our first palliative care program for the system's long term care facilities.

We set out to develop a standardized plan of care for people in the later phases of life. We also developed and administered a survey in our long-term care facilities to direct the educational plan for professional competency, and then we implemented that plan based upon needs identified in the survey.

We met monthly to create policies and procedures for palliative care and to initiate an educational program to train nurses in the care of the dying. Two years later, we have met our goals.

We participated in the Angel program, a two-day seminar for nurses covering pain and symptom control, education concerning the dying process, how to interact with families, and a total interdisciplinary approach to comfort care.
At Mercy Franciscan Terrace, we have educated 15 nurses, who serve as mentors to other nurses.
Holistic therapies, including massage, healing touch, and aromatherapy, are provided. Funded through a grant, these therapies assist both our palliative care residents and their family members.
We have established a "Blue Angel Program"-a volunteer program in which volunteers sit with residents who are actively dying in order to relieve family members and offer them a time to refresh.
We have a comfort cart that features soft, gentle music, a special blanket, soft lighting, snack items for the family members, and brochures that explain the palliative care program and what to expect as death draws near.
When a resident dies, we place a card outside the dining room where other residents and staff can express sympathy and write their memories of the resident. The card is either sent to the family or taken to the funeral home.
We strive to have at least one representative present at each funeral.
The spiritual care team conducts a memorial service quarterly to remember all those residents who have died in our facility. This gives the families and staff an opportunity for closure. Staff become very close to the residents in this homelike setting.
We partner with hospice to provide the best possible care on this very sacred journey. We strive to minimize physical and emotional suffering in a spirit of love.

It may seem as if we as health care professionals are providing a special kind of caring to residents who are dying. In truth, the residents are offering us the privilege of accompanying them on their special journey of life. It is we, the caregivers, who are gifted by our residents.