A blank journal indicating the space to write an essay and a photo of essayist Istiaq Mian, smiling.
When I reviewed the chart, I couldn’t believe how long the patient had been in the hospital. One hundred days. I double-checked the chart and it was accurate. The round number seemed like an achievement.
My hospitalist colleague’s note read like a journal post documenting everything Gary had been through. (To protect his identity, I have changed Gary’s name and some of his physical characteristics.)
Before coming to the hospital, a gallstone lodged into Gary’s pancreas, setting his pancreas on fire. Then, in the hospital, his pancreas died. His small intestine fistulized into his pancreas, leading to an infection. Even this far into his hospital course, he was still being treated with three of the world’s most powerful antibiotics.
Amid his infection, his other organs failed, one by one. First his kidneys, then his lungs. The notes never mentioned anything wrong with his brain, so I decided I would speak to Gary like any other patient with normal cognition.
I walked into Gary’s room on the eighth floor, which was also where most of the hospital’s COVID-19 patients were being treated. A nurse was working with Gary, who immediately made eye contact with me. I walked towards the large window. The top floor of the hospital featured panoramic views of downtown Madison, the Capitol building and Lake Monona.
It was a hot sunny day during the first summer of the pandemic and the traffic on John Nolen Drive looked like little Matchbox cars. My eyes then looked back to Gary on his hospital bed. A ventilator breathed for him through a hole made in his trachea by a surgeon. A cream-colored liquid infused into his veins. His extremities were thin. He was of average height and had a balding head with slicked-back brown hair.
I introduced myself. Gary couldn’t speak because he was on the ventilator, so I asked him yes/no questions. He was able to give me a thumbs up or thumbs down.
“Gary, do you have any difficulty breathing?” I asked.
Thumbs down.
“Do you have any pain?”
He flattened his right hand and waved it to make a “so-so” response. He pointed to his back.
After my first visit, the question I thought after seeing him was...where does Gary go from here? As a hospitalist, whenever I see a patient, I think about what barriers there are to leaving the hospital. Does the patient need to finish intravenous antibiotics? Does the patient need to set up outpatient dialysis? What about a definitive nutrition plan? With Gary I had all these questions and more. I was concerned that with his degree of organ failure, he would either die in the hospital, or, he would live in the hospital until he died.
I called the palliative care physician, Dr. Hobson, to ask him how his last conversation went with Gary. The palliative care team had seen him earlier during his stay and they had recommended less aggressive care. Gary’s wife did not want them involved after that.
“Listen, Istiaq, they know what we recommended and they do not want us involved. I’m sorry to leave you on your own,” said Dr. Hobson.
Gary was stable the rest of the week and he tolerated the gastroenterologist debriding dead pancreatic tissue from his belly. The nephrologist dialyzed his blood multiple times. Toward the end of the week, I saw Gary and he had a question for me.
I handed him a pen and clipboard and stood next to him. Next to his other calligraphy of writings to nursing staff, he scribbled, “Will...I...be...normal?”
I paused, thinking of how to respond. Medical school doesn’t teach a physician how to answer this type of question. The answer was no. I told Gary this. I was simple in my answers, knowing he couldn’t easily ask follow-up questions.
“You won’t be normal, Gary. You’ll have a new normal,” I said. I held up three fingers. “Currently, three of your organs are being supported, with dialysis, with the ventilator, and with the liquid nutrition. You won’t be normal, but it’s a new normal.”
That seemed to satisfy Gary as far as an answer, but sadness pierced through his tired face. That was the last conversation I had with him.
Prior to his hospitalization, Gary had been a healthy adult, living life in retirement with his wife. His decision-making at home was probably, what do I eat today? Or what hobby should I work on today? The fork in the road now was, “Do I live in the hospital artificially, or, do I withdraw care and die?”
I felt awful for Gary. As a physician, I make recommendations to patients but personally, I have never had to make such mortifying decisions. I will never understand the decisions Gary had to make until something that serious happens to me. As physicians, we aren’t any more equipped to make those decisions than patients who go through them.
Two weeks after I spoke to him, Gary met with Dr. Hobson and decided he had had enough. A respiratory therapist disconnected him from the ventilator and Gary died peacefully the next day.
As the pandemic finished and the world re-opened three years later, a childhood friend of mine, Hussein, came from Boston to visit me in Madison. I hadn’t seen him in five years. He met my son and daughter for the first time. He walked into my old Nakoma limestone house and walked around my small backyard and held Audrey, my backyard chicken that lays green eggs. As he held Audrey, I smiled and acknowledged that it may be the last time I see Hussein; we aren’t any more protected from another pandemic happening.
COVID-19 killed hundreds of thousands of people and led to many lonely deaths, deaths like Gary’s. I’m sure Gary would’ve loved seeing his friends just one last time but the truth is, whenever we see family or friends, whether it’s at the Terrace or Concerts on the Square, we never know if it’s the last time we see them.
As I move through the world now, I try to keep that perspective. But like many things that happened during the past three years, it’s hard to remember.
Istiaq Mian is an internal medicine physician in Madison. You can follow him on Instagram at @istiaq_mian.
