A Narrative: The Privilege of Helping a Patient and Family Recover from Illness

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.

Mary Cote

Mr. P is a 61-year-old gentleman who presented to Brigham and Women’s Hospital about a year ago and who eventually had multiple admissions after that first entrance into our system.

He suffered from severe congestive heart failure and ultimately acutely decompensated, requiring the implantation of a bi-ventricular assist device (bi-VAD). Postoperatively, he had a protracted stay in the intensive care unit and suffered through multiple complications. He transferred out to the step down unit with a bi-VAD; a tracheostomy tube due to prolonged intubation and pneumonia; a feeding tube due to tongue paralysis, which left him with an inability to clear oral secretions or swallow; and a central line with multiple drips infusing.

He was not able to talk, eat, or walk because he had been so very sick and deconditioned. I clearly remember walking into his room on that first night and not knowing where to begin. I paused, looked this stranger in the eye, introduced myself to him, and then to his wife and daughter who were sitting a distance away on the couch. I told him that we had a lot to get done and I remember his genuine smile and the twinkle in his eye as if to say, “Ya. I know.”

I soon became a primary nurse for Mr. P and his family. I learned quickly how to manage the equipment in the room. I knew the VAD settings and placement of the emergency equipment; the placement of the suction kits; the size trach and flow of oxygen; the rate and type of his tube feedings; and the location of all necessary dressing supplies. I identified a large list of nursing problems and daily goals for Mr. P to reach. I documented my physical findings and offered my plan to the surgical team each morning.

I remember positioning myself close to his room at night so that I could keep Mr. P safe. I needed to hear him because he was so very vulnerable given his limited ability to communicate. I knew the sound of his breathing and knew when he needed to be suctioned. I knew the sound of the VAD and guessed when he just needed a face in the middle of the night and again, I would often see that engaging smile. I wondered why he wasn’t terribly angry or frightened. How could he know peace in this terribly complex situation? What could I learn from this wonderfully giving man?

Once I became familiar with Mr. P and the many issues that he faced, I began to look toward his family and help them fill in the gap that now separated them from their loved one. The physical distance between the bed in the room and the couch in the corner needed to be shortened. Mr. P was different now, and he and his family had to adjust to this new identity. They needed to learn how to care for him so that he could be discharged as he strengthened and awaited heart transplantation.

Over the months that followed, I began to teach the small tasks that Mrs. P could perform. I remember how terrified she was to touch her husband of so many years. We would joke and say let’s just start with the feeding tube. I tried to keep it simple. I would spend time demonstrating to Mr. P’s family how to crush medications and administer them through the feeding tube, how to set up the feeding pump, and how to change the dressing. Mrs. P was so proud when she felt confident with these few simple tasks. I stood beside her and watched her take each step. Mr. P’s daughter also learned the tasks and talked about how weird it was to care for her father after so many years of his caring for her. Over these weeks, we shared about our lives, our families and our concerns of that day.

Mr. P was eventually discharged to home after a lengthy stay on our unit. He no longer needed a trach and spoke in whispers. I had seen him a few times as he would get readmitted for various reasons. During one admission, I had heard that he regained use of his tongue. I ran in, temporarily ignored the reason for admission, and asked him to move his tongue for me. He laughed because he was shocked that I had remembered. He would be discharged and readmitted a few months later. I came in at the start of my shift and was told that Mr. P was being transplanted and that I would go to the OR with him. At the moment that we needed to travel to the OR, Mrs. P gave her husband a final hug. I had tears in my eyes because I knew that she was wondering if she would ever hug him again. I went to the OR and stayed with Mr. P while the anesthesiologists prepared fluids, medications and monitors. I stood by his side and assured him that I would make sure that Mrs. P was being cared for while he was in surgery. I told him that he would do well because he had proven his strength over these many months. Again, there was the smile.

Mr. P was successfully transplanted and discharged to home. It is not an understatement to say that he had a huge medical team that participated in his care. I was but one small piece in this story. I think about him now because I feel like the story of Mr. P defines the role of the nurse well. It was the bedside nurse that spent the most hours at his side as each attempted to master the multiple tasks required in his care. It was a nurse who listened for sounds in his room that signaled distress. It was the nurse who helped the patient to fear less and the family to move closer. It was the nurse who saw him during multiple admissions and remembered his history. It was the nurse who ultimately had the privilege to be with him in the operating room when even his own family could not.

Most importantly, it was the nurse who grew personally as a result of the interactions with Mr. P. She learned about courage, and hope, and strength in the face of potential tragedy. It is for all of these reasons that we should all say with much pride that we are nurses. We are given a true gift when allowed to briefly enter the lives of these otherwise strangers. And yes, when the stranger recognizes you as a nurse, smile and know exactly what that means.

Mary Cote cares for patient Joshua Runk.

Commentary

Ellen Liston

In this narrative, Mary Cote exquisitely describes how she establishes a relationship with Mr. P in a way that acknowledges, appreciates and helps to sustain his humanness while in the midst of extreme illness. As I read it, there were several aspects that were striking to me – Mary’s connection to Mr. P and his family, her concern about the fears of the family, the vulnerability of Mr. P and her presence in the OR at the time of transplant.

When Mr. P arrives on the unit, he is surrounded by technological intrusions that are keeping him alive yet distancing him from those he loves. Mary grasped this immediately and understood the need to take action.

She makes a connection with Mr. P and his family. “I paused, looked this stranger in the eye, introduced myself to him and then to his wife and daughter… I told him we had a lot to get done.”

She recalls his response and imagines that if he could speak he would surely agree. When Mary describes being the primary nurse, it is for the patient and the family. She knows that the family is an extension of the patient, and her stance toward the family is one of inclusion.

Mary is attentive to the fears and anxiety of the family. She recalls how terrified Mrs. P was to touch her husband of so many years. She describes how she gently coaches Mrs. P to manage the feeding tube because through that act, emotional and physical touching is possible. She is lessening the distance that she first noted and, at the same time, preparing the family for care giving at home.

Mary is attuned to Mr. P’s vulnerabilities and knows both his clinical situation and him as a person. She conveys this when she describes positioning herself close to his room at night. She is alert to both his physiological and emotional vulnerabilities as she listens to his breathing and the sound of his VAD (ventricular assistive device) and his need for human connection in the middle of the night. How comforting those visits from Mary must have been for Mr. P.

Mary tells of sharing herself with Mr. and Mrs. P. “Over the weeks, we shared about our lives; our families; our concerns of that day.” In a conversation with Mary, I asked her about how she decides what she shares. She said “the family leads me.” Mary is describing her skill of involvement.

Sharing parts of her life is about personalizing care and creating a sense of mutual trust and openness. She does not lose her objectivity or her commitment to the goals of the patient. She is led by the responses of Mr. and Mrs. P. Getting the right level of involvement is learned over time and is dependent on the situation. Mary’s story illustrates the skill of involvement of an expert.

Mary accompanies Mr. P to the OR and, in this alien environment, she comforts him by reminding him of his proven strength and honors his connection to his family when she reassures him that she will watch over Mrs. P while he is in surgery. Celebrating his strength and honoring the link with his family are examples of Mary’s exquisite caring at a critical moment for Mr. P.

Mary ends this narrative by conveying the significance and worth of her work and the reciprocity of her relationship with Mr. P. She beautifully describes the privileged place of the nurse in a patient’s life, but she also acknowledges that the act of giving is also an act of receiving. Mr. P taught Mary about courage, hope and strength.