|Ellen Liston, MS, RN|
By Ellen Liston, MS, RN, program director of Nursing Practice Development advisor to BWH Nursing Practice Committee
In this narrative Susan tells us of a beloved patient facing death and her own grief as she guided his passage. I spoke with Susan wanting to learn more about her experience caring for Bob, including her conversations with him about decision making, saying good bye, and attending his wake.
Susan identifies that there is an immediate connection the first time she meets Bob; she sees him as a person, rather than a diseased body. This connection, or engagement, is the emotional bond with a person and his/her situation. It is fundamental to a caring practice. With some patients stronger bonds may form as in this situation. Susan recalls learning that they shared a common love of horses and Bob was “just easy to like.” Susan assigns herself as primary nurse for Bob thus making a commitment to him that she would follow him throughout the course of his illness.
Bob is admitted with respiratory distress and does not respond to interventions. His physician discusses code status with Bob and it is changed to Do Not Resuscitate/Do Not Intubate. Susan is caring for Bob after this discussion and she listens to what he is saying. She is searching for his understanding of the events. As she probes she learns that he is not ready to give up and wants to be intubated. Susan is skillful when she asks him to repeat his conversation and what he wants to happen. Susan also describes sitting on the bed as they went forward in their discussion. This was a comforting gesture – I imagine her, face to face with Bob, creating intimate space at this significant moment.
Susan also shared what she has learned ;about end of life discussions. She acknowledged that it is hard to talk about dying and that some patients give you permission and some don’t. You try to be attuned to their emotions. She said Bob gave her permission to delve further when he said to her “I know I am going to die”.
Bob does improve and is discharged but shortly later he is readmitted. Susan joins the physician for a discussion about redirecting care to comfort measures. The doctor leaves and Susan stays. Susan is with Bob to assure him that in this transition he will continue to be cared for. She is there, addressing with Bob what he is experiencing at that moment. Her relationship and connection with Bob allows him to share his anguish with Susan; Susan demonstrates her caring by her attentiveness and presence.
Before Susan leaves at the end of the shift she knows that she needs to say good bye and describes this as one of the hardest things she ever had to do. She is very much affected by the loss of a relationship with Bob and she discloses a sense of failure. She tells me that this sense of failure is not uncommon, but she also notes that she has learned that often when a patient hears there is no more treatment for the disease they offer expressions of gratitude rather than anger.
I asked Susan to talk more about his wife and her relationship with her. She said she was very quiet, very kind. They often would talk about horses. When Susan attends the wake she says that she wanted to go because she was not with Bob when he died but also she wanted to support his wife. Knowing that they did not have family she was concerned that she would be mostly alone. By attending the wake she was able to see that Bob’s wife was not alone as she had many friends and this was reassuring. Here is a clear example of Susan’s care and compassion extending to the family.
Narratives often give us glimpses of the reciprocity of the relationships between patient, family and nurse. In this narrative we hear Bob expressing appreciation for the care he has received and Susan reflecting on what she learned from Bob. We learn how Susan felt remorse for not being with Bob when he died and Bob’s wife telling Susan that the good bye was exactly as Bob would have wanted. We give and we receive. How beautifully Susan ends her narrative with “you are renewed and able to continue on to the next person who needs you”.