Hanna Rose Leschisin Wiley
Fellow, University of South Dakota Sanford School of Medicine, 2021
As a third-year medical student there is a requirement to participate in hospice program curriculum. While it is easy to slide through requirements, meeting only basic criteria, students are challenged to engage with the experience in a deeper and more meaningful way. One such way is to encourage students to adopt a few of their own patients, walking alongside them during the last days to weeks of their life, and receive the last gems of education they and their families choose to bestow. The other way is to reflect on their experience through journal entries, to mentally debrief the emotions evoked, and consider ways to incorporate it into their future patient care framework. These musings are based off that reflection, which began as an assignment and turned into a heartfelt and grateful contemplation of lessons received. Names have been changed to protect the patient’s identity.
Today I saw my first admission to hospice. I expected it to be emotionally charged, with various family members arguing and the patient lost in the haze of his illness. Instead, I found a pleasant elderly gentleman that if I didn’t know otherwise would have said he had many years ahead of him, an involved son who worked weekends as an ICU nurse, and his sweet dog Ruthie. There were no tears, no hard conversations. The hospice nurse came in like a strong summer breeze — filing the room with light and smiles and motion. She flitted between tasks — signing papers, getting to know the patient and his family, setting up home medical equipment, and offering to help in any way she knew how. Mr. R mostly sat and watched her, occasionally voicing an opinion but mostly repeating “whatever you think would be best”. He accepted the discontinuation of his chemotherapy without thought, endorsed how nice a hospital bed would be while planning how he was going to rearrange his living room furniture, and his only complaint was a rash on his back that was a little itchy. He asked to hold my hand as he got on the scale to be weighed, and we laughed lightly that I wouldn’t tattle on him to my husband. It made me want to spend all day with him, making sure even his smallest needs were met, while also feeling helpless as I watched the nurse discontinue so many of the medications prescribed that would have keep him feeling well for years if his prostate cancer hadn’t gotten in the way.
Yet despite my optimistic opinion of his prognosis, several weeks later I returned to find the situation shifted. The changes in him were subtle but significant: he was weaker, more confused, and more dependent. The hardest truth was realizing that much of the playfulness had left his eyes —they had turned more somber and distant. He smiled less, lost track of conversation more easily, and his answers changed more frequently. You could tell he was still fighting to maintain his stoic nature and independence, but there were more battles lost than won. He was using more incontinence products, wore a lap blanket instead of trousers, and was more propped up with cushions and pillows then he wanted before. Yet the hospital bed he accepted easily just a few weeks earlier still laid empty. It made me wonder why he said he agree to it and then preferred to stay in the chair. Was the bed’s presence a reminder for him that he wasn’t ‘that sick yet’? Did it seem benign at first but then became a hard reminder of how little time he had left? Did he fear laying down in it and never getting back up? Regardless of his reasons it sat empty. The house was quieter — more tasks were done in softer voices or questions asked of his son who mostly nods or shakes his head. The nurse is a guide for two men that must have spent most of the day in silence, wondering what they truly needed at that point. She suggested ways to make him more comfortable, asked what they needed help with, and pushed them to consider different approaches. As they slowed down, she told them to take one more step.
Just a few days after my last visit, my attending was going through her in-basket chart notes between patients. She paused and asked if I heard that Mr. R had passed away over the weekend. I was shocked — while there was obvious decline from my admission visit, he still appeared to have plenty of time left. I was left feeling guilty, wondering if I had missed obvious signs, wishing I had taken the time to see him more often and gotten to know him better. It was even more shocking to know I had visited Mr. R just days before and had no idea of how little time was left for his goodbyes, despite my clear observations about his condition. It is one thing to record objective facts, it is another to accept the greater meaning lurking beneath. There is no magic countdown of the time we have left, and even subtle declines can tell another story about how a strong fighter is starting to let go.
From the first time I walked up to the door, I knew this health care visit was going to be very different from the formalities of white coats and hierarchies you normally see in the hospital. There is a certain power differential in expecting patients to come see you, to sit in your rooms, to wait for you. Hospice does not abide by those rules — you come into the patient’s home whenever they need you. At the door the hospice nurse stopped to take off her shoes and walked in unannounced, cheerfully calling out for our patient and her husband. From the kitchen the husband brightened with our arrival and reported that Mrs. L was in the bathroom. The hospice nurse called “wait here” to me and bustled away. Due to radiation of her sacrum, Mrs. L’s bowel function was compromised, necessitating enemas every few days, one of the primary services the hospice nurse provided for her. This left me and her husband in an immense quiet, but within a few seconds he started to talk in a way you would address a friend. He asked about me, my family, my upbringing, my education. After a few minutes, I transitioned to asking about his life and journey with hospice, and in an incredible openness not a single question I asked was off the table. He talked about his struggles to help his wife — Mrs. L was a stubborn, busy woman who preferred to take care of the house on her own but due to her condition was unable to complete many tasks to the standard she was used to. For the first time in his life, Mrs. L’s husband was doing all the laundry, cleaning, and cooking under the eye of a demanding task Sargent. She was critical and particular, and it continued to be a battle for her to accept his way of doing things. Surrendering was difficult — while I might see cleaning my house as a necessary evil, she felt it was part of her identity. It made me wonder what I would have to lose in my own life before I stopped feeling like myself anymore. What things make up who I am, and would I be able to let them go gracefully?
A few weeks later, I returned to see Mrs. L on one of her last days in our hospice program. In between my visits the nurse had informed me of a point of contention — Mrs. L wanted to stay in her home until the end while her husband couldn’t imagine seeing the room where his wife died every day. It was a heartbreaking stalemate of two individuals trying their best. However, the last time the nurse had visited, Mrs. L had changed her mind and was open to placement at an inpatient hospice facility. The weight of this choice was still fresh and heavy when I arrived. Mrs. L expressed how nice the facility was, how she was confident that she would receive a high level of care but was sad to leave behind her home for the last time, as well as all the local hospice staff who had cared for her. It was eye-opening to me how the relationship between hospice nurse and patient was so much more meaningful than the typical relationship in medicine. She saw these caregivers as part of her own family and asked them to visit in the way you would visit your own grandmother. It was beautiful to witness how the village that had sustained her throughout her hospice admission would be carried in her heart long after they stopped their daily visits. It was also a reminder that the lines that constitute close loved ones might look different than you would expect in someone’s final days, as the only prerequisite is being present and sharing a caring heart.
During the same visit, the topic turned to Mrs. L’s pain management regiment. While she had several prescriptions for pain, Mrs. L often avoided taking these pills. She chose to endure the pain for the sake of greater clarity and sharpness during her last days. Her husband supported her in this decision but commented on the moments he caught her in pain when she thought no one was watching. In response, the hospice nurse stated that many loved ones often wished they could take the pain away from the patient and bear it themselves. Mrs. L’s husband cut in and shook his head. His response was profound — he knew he could not bear even a quarter of her pain with such grace, and Mrs. L’s desire to care for him coupled with his low pain tolerance would have made the situation more painful emotionally. The desire to take pain away seems a natural and compassionate choice, but his awareness of their life and his strong stance on thesubject made it clear how much time he had spent considering this prerogative. In a way, his expression was that of real love and practical experience that accompanied fifty years of marriage. On pondering the life they had shared together, I became aware of the immense loss he would experience with her passing.