I had vacation scheduled for this week. I’ve been at home, doing chores and enjoying being in the presence of my thriving house plants. While trying not to spend too much energy on COVID-19 while not at work, the physical distance from the hospital has provided me room to think about it differently.
I love to tell stories, so I’ll start with that of one of my dearest patients from residency. I’ll change his name and call him James. A veteran in his mid-80s, he reminded me a little bit of the old man from the movie “Up.” Stubborn and distrustful of almost all, when I eventually cracked his shell, he was warm and delightful to be around. Even when I knew he would intermittently disagree with my medical advice in a way that made me want to pull my hair out, I looked forward to our visits together.
Alone in the world, James had been unstably housed or homeless intermittently for many years, and as an older adult had gotten a small subsidized apartment. He had no friends or family members: Near the end of his life he’d asked me, as his primary care provider, to be his power of attorney, citing me as his closest contact. On most days, he stayed in his room, used an exercise machine that he’d somehow purchased, drank Coca Cola, and watched YouTube videos of scenes of street life from countries he’d never visited.
He had several chronic medical problems for which he came to see me about once every six weeks. He had no phone. If I wanted to reach him, I’d either wait until his next appointment, which we set up prior to his departure each visit, or I’d send him a letter in the mail. He had strong opinions about his medical care, but when we reached an agreement, he took his medications precisely as prescribed. We made small, incremental changes, as I knew that I would not have the chance to monitor his lab tests or symptoms for six weeks. Once, after falling and breaking his arm outside of his apartment building, he took three connecting buses to get to our hospital’s emergency department. When I asked him, a man in his mid-80s with heart failure and difficulties balancing, why he didn’t ask someone to call an ambulance for him, he said, “Because those are for emergencies! This was just a broken arm!”
That day, in the emergency department, James’ arm was splinted, and he was asked to come back in a few days, after the swelling went down, to get reevaluated. The message to return early was somehow lost, and while in the coming weeks many people went to great efforts to contact James, he came back at his next regularly scheduled primary care appointment, over a month later. He still wore the same splint. By that point he’d permanently lost almost all mobility in his dominant hand and wrist.
James died a few months ago, of a complication of one of his chronic diseases. He maintained his stubborn dignity to the end of his life. I felt lucky to be still living in Seattle when this happened, and that his inpatient provider contacted me when he was admitted to the hospital so I could visit him in the days before he died. In what felt like an important moment in my young medical career, James and I watched one final YouTube street scene video together.
There are many people like James across the country, whose chronic diseases maintain a precarious balance even with a strong medical system to support them. Despite optimal conditions, sometimes communication breaks down and complications occur.
Studies have shown that in the setting of crisis, the death toll often is much higher than is officially reported. In 2017, Hurricane Maria caused massive damage to infrastructure in Puerto Rico. While the official death toll was set at 64, public health experts estimate thousands more died from interrupted or delayed health care for their chronic illnesses.
In speaking with nurse and doctor friends who work in different Washington clinics and hospitals, they describe work this week as “eerily quiet,” with the “usual patients,” people with heart failure exacerbations, diabetic ketoacidosis, cirrhosis, and other chronic diseases, not coming in as usual. These patients are likely trying not to be exposed to SARS-CoV2, the virus that causes COVID-19, which could be especially dangerous for them. But I’m also worried that they will come to the hospital in a week or two, when their illnesses have further decompensated, when it will be even harder to right the scales back to that delicate balance of health.
The people who have always been the most vulnerable – those experiencing homelessness, who do not speak English as a first language, with mental illness, who do not have a disposable income, who lack cell phones or computers to easily communicate – will undoubtedly suffer by social distancing from their providers. Telehealth is a helpful tool for many and is probably the best option for most right now. But some will fall through the cracks that COVID-19 has created in our health care system. They’ll become uncounted deaths of this pandemic.
So take care of yourselves! If you do or do not have chronic illness, do what you can to stay well. Check in on those who you know are vulnerable. If you can help them adapt to communicating via telemedicine appointments, or grocery shop or pick up their medications for them, you may be saving a life from COVID-19.