I spent the first week of my outpatient experience in internal medicine working with the nurses at Hospice of the Red River Valley in Fargo, ND. Besides being incredibly nervous to begin my third year of medical school, I was anxious about what I might encounter on my week at hospice. I was naive to end-of-life care; I was under the impression that hospice was emotionally distressing, that all patients were dying from cancer and that there was little that providers could offer patients besides Ativan and morphine. My week with hospice fortunately rid me of those misconceptions. These brief stories emphasize the small details that ended up having a profound impact on me.
Each Monday, nurses met to discuss what had happened with patients over the weekend and to plan their goals for the week. As nurses and I filed into the conference room, I listened to them catch up about their personal lives, talk about their children, laugh about their too-short weekend at the lake and groan about chores like laundry and grocery shopping. I’m sure this banter occurs in offices around the world on Monday mornings, but the simple energetic chatter began to unravel the preconceived notions I had about hospice being nothing but sad.
We went to a nursing home to visit an elderly woman. The nurse briefed me on her status: she had dementia, weighed 85 pounds and was bedridden. She had declined further over the weekend, and the nurse predicted that she was mere days from dying. I introduced myself to her a few times. Each time, she was newly delighted; she clapped her hands, exclaimed that Anna was a beautiful name and complimented me on my lavender blouse, gleefully remarking that we had similar tastes in clothes as she tugged on the lavender sweater she was wearing. But her glee was short-lived before she was suddenly crying and yelling, “I’m sad, but I don’t know why!” She shed only a few tears before she became quiet and pensive, looked at us very seriously, and said, “I love you all.” She appeared very graceful at that moment, and it left me wondering about her life, her personality, her essence. I was entirely perplexed about these wild mood fluctuations. Why did she teeter so precariously between cheerful, anxious, sad, and terrified? I read more about dementia on the Alzheimer’s Association website: “People living with dementia keep their essence and spirit, although many will experience major personality changes … your loved one can show rapid mood swings from calm to tears to anger.”
We visited the home of a 93-year-old woman with COPD. It was a hot July morning, well over 80 degrees by 9 a.m., but she had the heat set to 80 degrees in her home. Perhaps she watched the sweat drip into my eyes as I removed my cardigan, because she quickly but unapologetically explained that an aide was coming to give her a bath later, and she hated when it was cold in the house after her bath. I couldn’t argue with that. Under the cardigan, I was wearing a blue skirt past my knees and a white collared shirt with my name tag pinned to the front pocket. She told me she liked my ‘uniform’ and compared it to the dresses she remembered nurses wearing in the 1930s when she was a child. I laughed in embarrassment, because I really liked that outfit (which wasn’t a uniform!) She was frank, but she was lighthearted and so kind. She must have somehow sensed my intrigue with her demeanor, because she explained to me that she was ‘this way’ (self-described as stubborn, but a ‘softie’) as a result of over 40 years of teaching gym class at a grade school.
On the drive over to the patient’s home, the hospice nurse briefed me on her status: the patient was a recently retired nurse, she had colon cancer with peritoneal metastases, had recently undergone colon resection and had gotten a wound infection along her abdominal incision. We were going to clean and dress the wound. We got to her condo, and she showed us into her pastel colored bedroom where she had a plastic bin meticulously organized and filled with gauze, tape, antifungal cream, etc. She closed the bedroom door behind her to keep out her inquisitive cat. As she climbed onto her bed, she excitedly told us about her granddaughter’s recent visit from Washington, motioning to a framed picture of a toothy toddler that rested on the nightstand. As the nurse cleaned and dressed the wound, I contemplated how great it was to come into her home where we could change her dressing in her own bed, surrounded by pictures of her family.
We went to the memory care unit of a nursing home to visit a couple of patients. A music therapist was there on her weekly visit. She played guitar while the aides handed out tambourines, wooden blocks, and kazoos to the patients. One of the patients we visited was known for being gruff — when we met with her before the music started, she cursed at us and told us to leave. Once she was outfitted with a tambourine, we saw a different side of her. She closed her eyes, smiled wide, and sang along; she stood and danced with one of the nurses. The aides and nurses who knew her said they had never seen her act like that. The hospice nurse I was following cried.
The man we visited had amyotrophic lateral sclerosis. He was lying in bed wearing checkered pajamas with a BiPAP mask secured to his smiling face. As I checked his vitals, I noticed a nearly illegible note scribbled in purple crayon on thick construction paper taped to the wall next to the bed. I could barely make out the words, “I want Grandpa to have hope.” The child who wrote that had more insight than I did. I was concerned about the man’s lab values, his respiratory status, and of course his comfort; but I’m not sure I would have considered his mental and spiritual well-being had this child not literally spelled it out for me. The smile that refused to be subdued by his BiPAP mask assured me that he had hope.
If my false notions about hospice were challenged by the friendly conversation of the nurses on that first day, they were all but shattered after five days of meeting people with uplifting spirits, loving families and hope. Contrary to my misconceptions, hospice was emotionally enriching, patients were living and coping with their illnesses, and there was much that providers could offer patients besides medication. In fact, the majority of our days were spent simply spending time with patients. Sure, we refilled medications, asked about symptoms and checked vital signs, but this introduction to my clinical years of medical school would be a memorable lesson in hope.