A Narrative:
Learning the Supports and Approaches to Best Meet New Patients Needs.

Nurses are compelling story tellers with compelling stories to tell. Nurses’ most memorable stories include situations where they have made a difference or where breakdown has occurred. Public story telling among nurses helps make distinctions in clinical practice visible and creates opportunities for ongoing discussion and learning, Even the story teller learns from telling the story.

BWH Nurse periodically features clinical nurse narratives for the purpose of stimulating ongoing discussion and advancing our learning as a professional community. This narrative is told by Mary Cote, MS, RN, Cardiac Surgery, Shapiro 6 East/7 East-West, and is followed by comments by Ellen Liston, MS, RN, program director, Nursing Practice Development and advisor to the BWH Nursing Practice Committee.

By Karen Wallace, BSN, RN Oncology Tower 6A

Karen Wallace

Admission for a bone marrow transplant is high on the list of life stressors. Each patient brings his or her own unique concerns, but there are common ones as well. Patients can come from all over New England, leaving family and friends at home, and in order to visit, a long drive fighting Boston traffic may be required. They face chemotherapy and total body radiation. They worry about the complications of treatment, and they worry about dying. They worry about being in isolation for an average of four weeks. They will not sleep in their own bed, nor be able to brush or floss their teeth, nor smell fresh air or hug and kiss their loved ones.

In my many years of practicing in the bone marrow transplant unit, I have learned that all patients require emotional support and different approaches. Meeting new patients and families and learning the supports and approaches to best meet their needs gives me great satisfaction. The patient story I will share is an example of a situation that brought me great satisfaction.

Mr. A was hospitalized for a stem cell transplant. The evening I cared for him he was post transplant day 7. His course was complicated by an underlying bleeding disorder. His hematocrit remained low despite transfusions. He had received two units of red blood cells that day and his hematocrit was still 18. He was just found to have developed a cold agglutin antibody so he was ordered for additional transfusions using a blood warmer. He was febrile. I had several priorities including transfusing him with two units of blood using a blood warmer. I was unfamiliar with the blood warmer, so I knew the transfusion process would be complicated.

Mr. A. also had his priorities. He was uncomfortable. He was experiencing the pain symptoms of mucositis, including thick secretions and a dry mouth. He was experiencing rectal itching that was distressing him. Mr. A was someone who had many questions. He talked slowly. He needed detailed answers. He needed to review the answers to all his questions. I proceeded to address his pain and discomfort, including trying two different pain medications, answering all his questions and getting mouth rinses and rectal cream for his use.

Once Mr. A was more comfortable, he said, “Karen, I have a question. I have been told that some people like to shave their heads when their hair starts falling out. I have also been told that they are reluctant to shave my chest because of causing an infection from a cut. I am wondering if it is safe to shave my head?”

I spent time explaining that we had a different type of razor for shaving the head that didn’t cut quite as close. I talked with him about it being a personal decision. I told him some patients feel their hair follicles become tender and that this discomfort is relieved with shaving. I assured him it would be safe. He said he would like to think about it.

As the evening progressed, Mr. A informed me that after thinking about the information I had given to him about shaving he would like to proceed. He wanted to do it that evening. I explained that I needed to do some other things first, but I would make the time to do it. When the time came, I carefully shaved his head. He said thank you as he moved his hands over his head and looked for the mirror. I felt privileged to do this; it can be a very emotional moment.

Mrs. A was present at her husband’s bedside most of the evening. Before she left, she stopped to say goodbye to me. We talked about how I thought he would have a good night; his pain was under better control, he had his transfusions and his fever was down. Hopefully he would have a restful night. I talked to her about what a long day she had coming from work to the hospital. She shared that she was tired with her day starting at 5:30 a.m. as a teacher for middle school students learning English as a second language. I gave her a bottle of water for her ride home. We talked about seeing each other soon.

I felt good as I left my shift that evening. It was very busy but satisfying. I was able to give comfort and support, and I was leaving Mr. A in the hands of a respected colleague whom I knew he was familiar with.

The next day I received a call at home from a colleague. She sadly told me Mr. A had hemorrhaged during the night. He had gone to the ICU after surgery and died there. A colleague visited the family in the ICU waiting room and Mrs. A made a point of saying thank you to all his nurses.

Mr. A was not expected to die. I was glad that I could be with him on what was his last evening and that he was comfortable, and his wife felt he was well cared for. I attended to the details that were important to the patient and his wife.

Commentary

Many inpatient units are looking closely at continuity of care and the importance of continuity to knowing the patient and family and having the patient and family feel known and cared for. This narrative suggests that the skill of engagement, so beautifully demonstrated by Karen Wallace, is essential for a meaningful relationship to form between the nurse and patient/family.

Ellen Liston

In this narrative, Karen describes a situation that is not unusual on a bone marrow transplant unit — a patient experiencing the complications of a transplant and a nurse having a busy evening. It was the unexpected death of Mr. A that calls Karen to reflect on how she cared for him and his wife on what was to be his final evening.

What stands out in this narrative is Karen’s skill of being present for the patient; she lets the distractions recede and intentionally stays centered and focused in the current moment with Mr. A. This presence serves as the foundation for her caring practices.

I had the opportunity to discuss this narrative with Karen. I wanted to know more about how she approached Mr. A, how she managed the competing priorities, the experience of shaving Mr. A’s head, her relationship with his wife, and finally her feelings when she heard of his unexpected death.

This was Karen’s first time caring for Mr. A. She recalls that when she went to meet him for the first time, he looked uncomfortable and appeared anxious. She let this initial impression guide her interventions, and she focused immediately on his comfort. She spent time with him, involving him in the plan. She remembers he was most uncomfortable because of his mouth sores. “It can be very scary – secretions, dry mouth, hard to talk. I understood what he needed. He sensed my confidence, and he became more relaxed.”

Karen describes someone who talked slowly, needed detailed answers, and then needed to review the answers. We get a sense of this when she briefly describes her conversation with him about shaving his head. I asked how she stayed in the conversation particularly when she was concerned about transfusing him. She said she has learned that when you meet the needs of the patient, things fall into place. She said Mr. A was a thinker, very intelligent, well read, not someone you could give a quick answer to. “You reprioritize, you spend time with the patient, and you just do it.” Karen is very perceptive and describes beautifully how she responded to this individual patient’s specific needs.

An important event in this narrative is the head shave. Karen acknowledges that it was an emotional moment and a privilege. Nurses frequently shave the heads of patients, but for the patient, it is a big thing. They worry about it. You offer it and wait until they are ready. She recalls putting warm towels around Mr. A. She tried to be gentle and neat and when she was finished, she told him he looked good. She told me that she really believes people are beautiful without their hair. Throughout the evening, the connection between Mr. A and Karen is developing. She recognizes and acknowledges him as a person with unique needs, and he trusts her enough to ask her to shave his head. The shaving of the head is a caring practice that undoubtedly made Mr. A more comfortable.

In this narrative, Karen shares her conversation with Mr. A’s wife. It is very poignant knowing that Mr. A suffered a catastrophic complication just a few hours later. Karen is aware that giving Mrs. A the bottle of water for the ride home was only a gesture, but it was a way to communicate that she wanted to take care of her as well. In the narrative, the presence of Mrs. A is noted, but her role during the evening is not articulated. This gesture reveals that Karen and Mrs. A also had a connection and that Karen’s caring extended to her as well.

I asked Karen about her feelings when she heard Mr. A had died. Karen acknowledged that she felt great sadness. She thought of his wife and how terrible it was for her. However, she also emphasized that she was immensely grateful to hear that Mrs. A made it a point to say thank you to all of his nurses. Karen says that she did the best she possibly could to take care of Mr. A, and having Mrs. A share her appreciation for the nursing care was very meaningful to her. Perhaps this thank you was Mrs. A’s way of caring for Karen.