Hospice

Directions: As you prepare to intentionally enter the world of the other, reflect on the following question: What are the expressions of caring between the nurse and the one nursed.

Nursing Situation written by Patricia Blanchette Kronk, MSN, ARNP, GNP-BC

A Sentimental Journey

One of our hospice patients had been in the inpatient unit several times for symptom management. We had developed a warm nurse–patient relationship, and I would often visit with her on days when I was not scheduled as her primary nurse. Once I was asked to make a house call to help her husband understand and organize her medications, as well as evaluate her status and level of comfort. Elizabeth was always kind and gentle, asking only for comfort. Her husband, Jim, was usually quiet, pensive, and supportive of Elizabeth. He wanted her to be as comfortable as possible. He told me that he would do whatever Elizabeth asked, and wanted to not be nervous or anxious in her presence. He admitted to me that his hardest moments in caring for Elizabeth were when she was in pain. He found it extremely hard to remain present and unable to do anything to relieve her discomfort.

Both Elizabeth and Jim would seek admission to the inpatient unit during times of crisis; Elizabeth because she was desperate to be in pain control and equally distraught at the level of distress Jim suffered, and Jim because he was “helpless to help the love of his life.” Both Elizabeth and Jim needed nursing care.

During what turned out to be Elizabeth’s final admission to the hospice unit, I was privileged to experience many memorable moments with Elizabeth and Jim. Because Jim spent most of every waking hour at her bedside, leaving only for “real personal” personal care moments, I made sure I included him in conversations with Elizabeth. Over several weeks, I learned about their life and their love story. They spoke of falling in love, dancing to favorite songs of the Big Band Era, family, important times in their marriage, and the joy they experienced during travels around the world. Occasionally they would speak of a special time and then stop in their story, sharing an eye-to-eye conversation that was solely between the two of them. It was a privilege to witness these conversations and understand that my presence, while very real, was not noticed by either Elizabeth or Jim.

As Elizabeth’s physical condition declined, we were all focused on comfort and symptom management for her. Nursing staff, the medical director, Elizabeth, and Jim were each and all focused on ensuring her comfort. The hospice care center provided a quiet room, comfortable bed, soft lighting, lovely décor, and garden view. Medications and physical comfort measures were provided around the clock by warm, caring staff. Elizabeth, however, was unable to achieve pain control, and was unable to sleep.

I remember one Friday afternoon, in particular, when I discussed Elizabeth’s inability to sleep and intractable pain with her physician, several other nurses, and her husband. We were all concerned about her and I, as well as the others, vowed to find a way to help her. Around-the-clock pain medication dosing, as well as “prn as needed” for breakthrough pain, seemed inadequate. Her husband suggested that she just would not let go and let herself sleep. He had given her permission to let go, yet she remained awake, stoic, and the decision maker.

When I arrived on the unit the following Monday morning, I learned that she dozed only a few minutes over the weekend and that her husband never left her bedside. She remained awake that entire day, eyes open rarely speaking, but offering a tentative smile now and then. We provided every comfort measure we could think of, with her permission, yet nothing changed.

Toward the end of my 12-hour shift, I went to her bedside to say goodnight.
She whispered that her pain was unbearable, that she was “oh, so tired,” and asked me to please give her another dose of her medication. Her husband stepped to the other side of her bed, took her hand, and said he would be a diversion until I came back with the medicine. Just a few minutes later I dimmed the room’s lights and started a slow IV push. I glanced at Elizabeth, who was looking directly at Jim, sharing one of their silent heart-to-heart conversations. I softly started singing a song popularized in 1944 by Doris Day, “Sentimental Journey.” When the dose was given, and the song was sung, Elizabeth and Jim smiled at each other; Elizabeth breathed a little sigh, closed her eyes, and drifted off to sleep. I turned to leave and found the entire staff gathered at the doorway, quietly listening. Elizabeth’s husband asked, “How did you know that was ‘our song’?” Of course, I did not know.

In reflecting on this nursing situation, I have wondered why I decided to sing during the IV push, and why did I sing that particular song? For me, the call for nursing was to take Elizabeth out of her current suffering and back to a happier time. I had never responded to a call for nursing like this before. It came from deep within me, from a place of knowing of caring in nursing and of music popular during the Big Band Era when this couple would have been young adults. I was humbled by the impact this had on Elizabeth, Jim, and the hospice staff. Elizabeth taught me to be courageous and creative in my practice of nursing.

What were the calls for nursing? Certainly caring, comfort, authentic presence, and alternating rhythms come instantly to mind. First, though, is the question: How could I know what I was hearing on so many different levels? Toward the end of her life Elizabeth spoke very few words, and her husband became even quieter, yet they both seemed to cry out for help. As the honest caring and care provided by all seemed inadequate, I was personally perplexed by the need to do more within the hospice end-of-life structure. Why did I worry? Why could I also not let go? My practice of nursing changed as a direct result of this nursing situation.
I learned to trust my instincts, as this was the first time I really listened with the third ear when I silently asked, “What is really going on?” and “What are they really saying?”

Now, years later, reflecting on this nursing situation, I understand my novice approach to caring in nursing and nursing from the world of other. I was able to place myself in their shoes and better understand their wants and needs. Nursing as caring (Boykin & Schoenhofer, 2001) is the philosophy and model of practice for me.

Nursing situation excerpt from book:

Barry, C. D., Gordon, S. C., & King, B. M. (2015). Nursing case studies in caring : across the practice spectrum. Springer Publishing Company.

ASSIGNMENT:

PLEASE CONTRIBUTE TO THE DISCUSSION BOARD BY ANSWERING EACH OF THE FOLLOWING QUESTIONS:

(1)  Which caring concepts can be identified in this nursing situation and how does the nurse and the one nursed demonstrate them?

(2) How does each of the ways of knowing (personal, empirical, ethical, and aesthetic) inform your understanding of caring in this nursing situation?