“Patient is a 34-year-old male with a 9-month history of rheumatoid arthritis-associated interstitial lung disease who is currently being treated with mycophenolate and rituximab. He remains on high-flow nasal cannula with oxygen saturations of 84-87% overnight. Transplant team signed off as the patient did not qualify for transplant. He reports feeling well this morning and that he learned a great new magic trick with a disappearing card.”
Two weeks into my internal medicine rotation, I began to develop a sense of personal style with my oral presentations. They remained haphazard in organization and porous in pertinent findings, but I felt, or hoped, that adding a non-medical tidbit for the team to get to know our patients would distract from the presentation’s flaws.
In this particular case, all of us already knew this patient. Our resident cared for him in the intensive care unit for a month prior to his stay on our floor the past two weeks. We knew his wife, the names of his kids, his Chicago Bears fandom and his new card magic hobby. While presenting on this patient, I just wanted to give the team a reason to smile through the now inevitable, disheartening conclusion to his time with us.
For two weeks, I gave this presentation with only minor changes. Whether I got a laugh or some probing questions in response, we would enter our patient’s room shortly after. Pleasantries were exchanged, and the typical “how did you sleep?” and “how is your breathing doing?” followed. He would smile and state he is sleeping and breathing better than ever, prompting an eye roll from his wife in the corner. He would then seize an opportunity for a magic demonstration. Each day, as the applause died down, our team held a collective breath in apprehension of his and his wife’s questions.
They started broad and relatively answerable for our internal medicine team:
Are the medications working?
How long will I be on this oxygen?
Can I eat solid foods today?
Will my immigrant status hurt my chances of a transplant?
As days turned to weeks and our discussions with the transplant team grew dreary, the questions increased in difficulty:
They finished the insurance paperwork. Are we on the list now?
My wife took a second job. Are we on the list now?
We received donations and foundation sponsorship. Are we on the list now?
I am told someone needs to be with me continuously for three months to qualify. My wife, however, took a second job so that we would qualify, and my children cannot risk being deported. How are we supposed to get on this list?
Is this because I am an immigrant?
Our answers decayed from linear to circumferential to avoid any true response at all. We deferred responses to the transplant team and social worker. To the satisfaction of no one, we eventually found a moment to leave the room with a promise to check in later. For most other patients, the residents and attending took this time to discuss today’s plan and find a teaching point for the students. Here, we reflected in silence until someone let out a “so sad.” The rest of us nodded, and we moved on to the next patient on our list.
As is the responsibility of a student in learning, I read. I printed tables detailing candidate selection and exclusion criteria from the International Society for Heart and Lung Transplantation guidelines. I found transplant ethics papers discussing the conflicting principles of justice and utility. Though these guidelines claim socioeconomic factors should never be an absolute contraindication for transplant, our site, like nearly all others, have their own criteria. Poor social support is tied to increased depressive symptoms and worse mortality outcomes amongst lung transplant recipients. Our own hospital guidelines require three months of full-time home care following transplant, and our patient could not meet that requirement.
This is not to say we did not fight for him. Initially, he failed to qualify for insurance and financial support reasons. Rather than send him to a nursing facility with a medication regimen that had already failed, we kept him. We bought him time to acquire insurance and receive transplant foundation funding support. We called his children and begged them to answer the phone with every possible assurance that their involvement would not lead to immigration status issues. We phoned nearby transplant centers in the hope that a reevaluation would offer another chance. His transfer was rejected at the first hospital for his body mass index and at the second for unstable condition with his oxygen requirement. After a month on the floor, his stay in the hospital could no longer be justified. Rather than be sent to long-term acute care, he chose to return home with his family under hospice care.
I wanted to give him better answers and explain how our transplant policy was adjustable and adherent solely to the national guidelines without added rules. I wanted to do so much: assure him that immigrant status and financial instability were not barriers to receiving medical care, pretend so many others do not have better insurance or hire a full-time nurse for home support and show him that we would not give up.
As rotations come and go, I check his chart from time to time. I really cannot say what I am hoping to see. As much as it would change my worldview to see a transplant acceptance anywhere in the world, a month of daily presentations and broken answers buried that hope. Maybe, deep down, I still believe he has one more magic trick for me.
