By Jess Ma
He passed away on the 107th day. After I got home in the evening, I wrote down everything I could remember about him in my journal. For many days after his death, I often dreamed I was standing in that fluorescently bright ICU room. In the dreams, I would be watching him, and then he would wake up and start speaking to me, with those bright blue eyes glittering with animation and life. I always awoke feeling a little unsettled, not by his death, but rather by the fact that I knew so intimately the ways in which he was kept alive, and yet nothing about the life he lived until just hours before his final breath.
He was an existing patient on the unit when I joined the surgical ICU team, and for 10 days I followed him, tracking how every organ system was doing each day. Everyone on the team knew there was only one way this would end; his quality of life had deteriorated so rapidly since the early summer, after a bout of necrotizing pancreatitis and multiple tragic complications; he was barely able to interact with his own body, much less his environment, and his life was propped up precariously by every possible machine that could perform the function of a vital organ. For him, no medical intervention would add more significant chapters to his story. It was just a matter of when his daughter would be ready to close the book.
Because of the pandemic, visitors were only allowed after 12pm each day. When his adult daughter came to visit each afternoon, I was told to avoid intruding on their cherished private time together. I only ever really saw her shadow behind the drawn curtain as I walked past the room; and I knew that one of the surgeons on the service (a group of surgeons rotated between trauma, acute care, and surgical ICU) would routinely give her calls or meet up with her to discuss how her father was doing, even on days he had off. Surgeons are not generally thought off as doctors who can spend a lot of time just talking to patients – after all, in the time he spent on one of those daily conversations, he could complete an appendectomy. Though neither he, nor the rest of the team, could offer a magic solution, what he offered was crucial – his time.
On his final day, I finally had the opportunity to meet his daughter, since my attending thought it would be valuable for me to observe the final family meeting, how comfort measures were put into action, and the role of palliative care and social work. During the family meeting, the attending surgeon was so beautifully eloquent and thoughtful; I was unprepared to be so moved; I felt my own lips tremble, luckily hidden by the mask, and tears rush to my eyes, which I quickly tried to blink away.
As we walked to her father’s room, I got over my nerves and introduced myself to her as the student who had been following her father as a patient. I learned that she is also an only child, like me, and she had had a difficult time feeling confident she was making the right decisions for her dad, with no siblings to whom she could talk. In her father’s room, she pulled out a big manila envelope full of old pictures, many of them large 5×7 or 8×10 prints. I stepped outside as she began to hold up each picture in front of her father’s open, but still, eyes and describe the memories attached to each photo. I came back into the room when they were getting ready to discontinue the first of many vital-organ-supporting interventions. The photos were in a stack at the foot of the bed, with the top picture one of her father sporting a full mustache and a big smile, standing next to a car.
I could not stop looking at his face in the photo. I wished I could save that picture in my mind; I wish I could remember him standing confidently, with the crinkles of his eyes, and the laughter I could hear through the picture. I took two deep breaths and then asked his daughter if I could look at the pictures with her. The hour or so that followed had some of the most meaningful moments of my clinical year. I learned about how much he loved being a father, and how he taught his daughter to be handy and fix cars; how he subsequently spoiled his only granddaughter and always made sure she had a new outfit for the first day of school, even if it meant he had to wear shoes with holes for a while. I felt incredibly honored to have been able to experience these memories with his daughter, because it allowed me to remember him as the person he was in life, rather than as the body in proximity to death.
I wonder what she will remember most about her father’s final 107 days. It was no doubt overall an upsetting and frustrating experience, but when she looks back, what will she value? Perhaps it will be that one surgeon’s listening, compassion, and competence when she did not have anyone else to talk to. Or the palliative care doctor’s reassurance that her father would not experience pain, even if it looked like it, in his final moments. Maybe it will be the social worker who offered her Bluetooth speaker so that her daughter could play her dad’s favorite music in the room. There were so many intangible things that for me, boil down to time and thought.
Our current health care system, unfortunately, does not adequately attribute value to those aspects of exceptional care. Where the money lies in medicine is in tests and procedures, and not in diagnostic problem-solving skills, patient counseling, and end-of-life comfort.
This pandemic has forced us to confront necessary changes in our health care delivery and will hopefully inform its future evolution. The uptake of telehealth and its reimbursement has not only improved access of care, but also highlighted the importance of a patient-physician conversation, and how it can mitigate unnecessary tests and lower overall health care spending. The staggering number of people this past year who had to die alone in their hospital bed illuminates the need for high-quality end-of-life care, both for the patient’s comfort, and the loved ones’ peace of mind.
And for me personally, I have been reflecting on how invaluable time is. I’m learning the art of establishing rapport quickly – made even harder with a mask hiding your smile – and then engaging in a way that elicits the most important information and makes the patient feel heard. I realize I cannot just snap my fingers or propose a policy that will add more hours to my day, but I am constantly learning how to stretch each minute.
Jess Ma is a third-year medical student at UMass Medical School.
This post is part of our digital symposium, In Their Own Words: COVID-19 and the Future of the Health Care Workforce.