Nurses are compelling story tellers with compelling stories to tell. Nurses’ most memorable stories include situations where they have made a difference, where breakdown has occurred or where there was important learning. 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 discussion and advancing our learning as a professional community. This narrative is told by Susan McDonald, BSN, RN, Hematology/Oncology nurse in-charge, and is followed by comments by Ellen Liston, MS, RN, program director of Nursing Practice Development and advisor to the BWH Nursing Practice Committee.
By Susan McDonald, BSN, RN, 7B Hem/Onc/ BMT Nurse in-Charge
|Susan McDonald, BSN, RN|
I met Bob about a year ago. He was in his late sixties and was admitted to the hospital with a new diagnosis of leukemia. The hospitalization included an admission for chemotherapy for about one month. I felt an immediate connection the first day I met Bob and picked him up as my primary patient.
He had been married in his late 20’s. He had no children and was very concerned about his wife while he was in the hospital. Bob did well during his admission. His wife surprised him as well. She made frequent trips in to see him despite him thinking she would never be able to drive into the city by herself. She managed to care for their horses and continued to work despite a limited support system. His wife had no siblings and both their parents were deceased.
Bob required monthly hospitalizations for three months, each lasting about a week.
Occasionally he would need to come in for antibiotics and when his blood counts were too low and he had fevers. He always ended up on our floor and would request to come to 7b when it was a planned admission.
Bob did well after completing all his chemotherapy. He would keep in touch when he came in for his follow up appointments at DFCI. His wife had also retired after many years as a veterinary technician. Eventually he relapsed. He was re-admitted for further chemotherapy.
He became seriously ill during this hospitalization however he was able to recover and return home for a short time. The leukemia did not go into remission and he enrolled in an outpatient clinical trial for a few months. The medication from the trial made Bob very sick and he was re-admitted to my floor directly from his clinic appointment.
He was admitted to a room at about 6 pm. By the next morning his oxygen demands had increased tremendously and he was on 100 percent high flow nasal cannula. He continued to worsen despite antibiotics. His code status had never been discussed. He made it very clear he wanted to try anything and everything. He told me many times, “I am not a quitter.” He talked about his concerns about leaving his wife and what it would mean to him. Because of his worsening respiratory status the doctor discussed his code status that morning. It was decided that Bob would become a DNR/DNI.
I was taking care of him that morning after his code status discussion. The first thing he said to me was “this is not going to win” and “I am not a quitter.” I listened to him talk for a while. While listening he told me about his conversation with the doctor regarding his code status. I was not present during this conversation with the physician but I could tell that he was not totally clear about this conversation. I asked him to repeat his conversation as he heard it. He talked mostly about if his heart had stopped for any reason. I sat down on his bed and asked him what he wanted to happen if he stopped breathing. He told me that if there was a chance he could come out of it he wanted to have a tube put in. We spent another 10 minutes talking about this and I clearly could see he did not have a clear understanding of the code status conversation.
I had never had such an open and honest discussion with anyone about the end of their life. I found it very easy to talk about it with him, maybe because of the closeness of our relationship. I was very truthful about my experiences and thoughts. He reiterated that he was not ready to give up and wanted to be intubated if he needed it. I contacted the team and his code status was reversed. He was a full code.
He remained on 100 percent HF NC throughout that day. The attending came back later that day and went on to talk to him again about is code status. It was felt that he had little chance of recovering if intubated and they felt he should be a DNR/DNI. He did eventually agree. I went back in after his discussion with the attending. I felt he had a clear understanding and had made an informed decision. He still said to me “I am not going to let this win.” Bob did eventually improve and was actually discharged on nasal cannula oxygen. The team truly felt his recovery was miraculous given how sick he had been on admission. I was so thankful for the time Bob had been given.
He was re-admitted within the next two weeks with the same symptoms and was quickly put on 100% HF NC and was unable to be weaned. His blood counts worsened and his leukemia began to take over his body despite further intervention. He fought and did not give up until he had another discussion with his attending. I was asked to join the doctor during this conversation with Bob and his wife. I was able to stay with him after his talk with the doctor. He looked at me and started to cry. He said “I can’t fight anymore” and “I am ready to stop.”
Later that shift, I went in to say good-bye to Bob because I was not due back for three days. Normally I would just say “see you in three days” but I could tell he was getting tired. I could see his breathing was more labored. I knew he wouldn’t be alive when I came back to work. I needed to say good-bye. It was one of the hardest things I have ever had to do. I had to admit that it was the end. I had to be truthful and tell him that I may not see him again. I felt that I had failed him to some degree. I was sad that we did not cure his leukemia. It was very hard to say good-bye to him that night. He thanked me for everything. He expressed his appreciation for all my care over the last year. What I hoped he realized is how much he had helped me. I have been a nurse for a long time, but what I learned from Bob is that each time you enter a patient room you build a relationship that changes you. Some patients are cured, but for those who are not we are called to provide a different kind of care, that is so difficult, but so important.
My friends kept me posted. He was started on a narcotic drip the next day and died the night before I was to return. I was torn because I wanted to be there for him when he died. I felt I owed that to him – to see it to the end. I had taken care of him for a year and I felt such a mix of emotion that in those last moments we were not together.
I don’t generally go to wakes or funerals but this case felt different. I needed to go to Bob’s wake for closure. It had taken a lot out of me and we had become very close over the last year. At the wake his wife looked very strong and I knew Bob would have been proud to see how well she was doing. I was able to talk to her and she told me that she was glad that Bob had not died while I was taking care of him. She knew he did not want that, he wanted to be able to say good bye and part ways with a smile and a hug, just as we had started. It helped me to know that.
Even when you think you have given all that you have to give, a patient or family looks at you, or says something and you are renewed and able to continue on to the next person who needs you.