Abstract
Walking up one of the steep sidewalks that are all too common in San Francisco, I found myself breathing heavily, sweat starting to bead on the back of my neck. I couldn't imagine how hard it must be for John, the patient I was going to visit, to get up and down this hill. He had a brain tumor, seizures, and an unsteady gait, more than enough to make him homebound even without this unforgiving hill.
John represents one out of the ∼2 million patients aged 65 years and older who rarely or never leave their home due to illness and functional limitations. 1 I was going to see him with my attending preceptor, Dr. Brook Calton, as part of University of California, San Francisco's home-based palliative care program called BRIDGES.
When Brook and I reached his door, we rang the doorbell. No answer. Another ring. Still, no answer. We called John, and he let us know that he was on his way, crossing his living room to let us in. Once he got to the door, Brook closely trailed John, and I walked slowly behind taking in the scene. We entered the door, shuffling into a narrow hallway, trailing John like ducklings following their mother. Once we were down the hall, we entered a crowded courtyard overgrown with vines crawling over moss-covered bricks. Plants that had long outgrown and overrun their pots lined the walls. Not only was the hill John lived on keeping him in, nature itself seemed to entomb John in this house.
Once inside, there was a familiar smell that took me back to my childhood in Tennessee. It was the smell of old car grease, the black kind that sticks to your fingers and finds its way under your fingernails. I realized that not only was it the smell, but also the entire house reminded me of my grandfather's makeshift garage workshop. There were narrow walkways with old electronics strewn about, uneven carpets, a fine layer of dust covering everything, and enough fall risks that even me and Brook had a few close calls during our short visit. Although it brought back fond memories for me, it was a geriatrician's worst nightmare.
In fact, part of the reason we had gone to visit John that day was that there had been a lot of commotion about his antiseizure medication. Somewhere between the medication being ordered and John actually ingesting it, there was a gap. John swore he had picked up all his medications at the pharmacy, and he adamantly let us know that the pharmacy had screwed up and not included his antiseizure medication. The pharmacy was sure they had dispensed the medication. So, where were those pills? Between the old stereos, wires, tools, and the grease, we agreed that another order to the pharmacy was the best option.
Despite my growing concern about John's well-being in this house, what I was experiencing and noticing was all a part of what make home visits so special. In clinic, I would never have experienced the breathlessness of climbing John's hill, the tribulations of navigating the plants that guard his house, or the deeper connection that the old garage workshop smell of his house evoked.
Just by being in John's home, I felt like I understood him a little better. I could tell that John lived alone, and he had grown accustomed to it. Although cluttered and chaotic, things were where they were supposed to be. There was a system, at least in his mind, of where things were and how to access them, even if it only worked part of the time. His house, and his relationship with it, told a story that gave insight into his strong will and an independence that he was unwilling to give up.
Brook, John, and I sat down around a coffee table cluttered with trinkets and old electronics. John had taken a seat on his full-sized sofa, occupying the only space not already covered in pieces of wood, blankets, and other objects. Brook sat in a leather recliner next to John, and I grabbed a rolling chair from another workbench area, picking it up to carry it over the impassable floor.
John told us that he had been having abdominal pain for the past few days. He hadn't been eating very much either. The last time this happened, he ended up in the emergency department and had to have an abscess drained from his abdomen. Brook and I exchanged nervous glances. Our visit continued, John was sweating despite the 60° temperature and thick layer of fog outside. His heart rate was 108. “I'm fine. I'm not going to the emergency room,” he said.
Despite my initial internal cringe about him declining to go to the emergency room, his statement embodied what I love about home-based palliative care. It provides the opportunity to truly meet people where they are. In this moment, John, here in his living room, in his domain, and on his terms, his values and what he wanted could be more easily and honestly shared.
Although John was respectful and appreciative of the concern Brook and I expressed for him, John was taking back some of the power that can be easily lost when we are in the fluorescent sterilized clinic room where we doctors hold court. In the comfort of his seat on the couch, in a home where he lived by his own rules, where plants could outgrow their pots, and old electronics could gather dust, John could tell his doctors “no.”
To be completely honest, John has probably always been the type of person who could tell his doctors “no.” However, being in his house, I heard it in a different way. His “no” was received in context, in an environment that corroborated that his independence and autonomy were clearly one of his most cherished possessions.
Brook and I did our best to support John, and we all agreed to a phone check-in later in the day from our team's nurse, and a nurse with the team would come tomorrow to check laboratory studies. He said he would be open to discussion if the studies were really concerning.
As we somewhat nervously made our way back across the living room, we passed through John's equally cluttered kitchen to re-enter the courtyard. I had just about reached the courtyard when I head Brook ask “John, what is this?” I turned around to find Brook holding a small orange bottle with a white safety cap. Antiseizure medication found.
Over the months that have followed that home visit, John has had a rough time. There have been multiple Emergency Department (ED) visits, several hospitalizations, and John has gotten pretty upset and felt betrayed by the medical system over mandatory reporting to the Department of Motor Vehicles (DMV) because of his seizures. He even temporarily fired the home-based palliative care team.
Yet, throughout his ups and downs, the theme of his struggle to remain independent shines through, and I am inspired by the way the home-based palliative care team has continued to do what they do best, meeting John wherever he is and providing care that honors John's values. As I look forward in my own career, I hope that I can hold on to the respect for patients' wishes that is amplified by seeing patients in their homes and continue to learn the stories that can be told from meeting patients where they live.