This blog post is a finalist in the STFM Blog Competition.
At the start of my internal medicine clerkship in medical school, I learned that I had inherited a “difficult patient.” He was 28 years old and had been admitted overnight for hypercalcemia and poorly-controlled sarcoidosis. During sign-out, the overnight resident shared that my “difficult patient”, Mr Johnson, was “non-compliant” with his medications and was threatening to leave against medical advice (AMA). Like a dutiful medical student, I shuffled to Mr Johnson’s room to check in before rounds. Maybe I’d gain some insight and garner some early-rotation good will, I thought. “You’ve done this before,” I reminded myself as I paused outside of room 1354. One swift, sharp breath to steel myself against…I wasn’t sure what. Two knocks and in: “Mr Johnson! I’m Student-Doctor Arnett. How are you this morning?”
Thirty minutes later, the story had shifted and I remember it like it was yesterday. I sat at Mr Johnson’s bedside while he sat slouched on the bed with his legs swung over the side. I don’t know whether it was his familiar eyes that turned down at the corners like my brothers’ or whether it was the pragmatism around the explanation of his life and choices, but I couldn’t for the life of me see Mr Johnson as “difficult.”
Had he skipped months of medications? Sure, but who wouldn’t if, like him, they were affordable. Had he missed his last several primary care and rheumatology visits? Absolutely, but with an understanding of his financial instability, how could he afford his copay? Had he asked to leave AMA before his calcium levels had normalized? “Definitely,” he stated calmly, “and I still plan to.” Mr Johnson shared that he essentially had two full-time jobs. Not only was he a home health aid, but he was also the primary caretaker of his bedridden mother. To complicate matters, his mother had advanced sarcoidosis and insulin-dependent diabetes complicated by kidney failure. If he stayed in the hospital overnight, not only could his home-bound clients miss out on care, but his mother would miss her meals and insulin doses.
My senior resident who had entered the room during the discussion interjected, “could your wife or another family member help with your mother for the day? Couldn’t they just leave work for an hour or two?”
Mr Johnson’s face answered the question. He absolutely could not ask his wife to leave work and risk losing her job—especially because the couple had spent the last 6 months saving money to move their three children to a new home away from the stray bullets and poor housing structure of their West Philadelphia high-rise. He pointed through the hospital window to the towering pale brick structure, “right over there.” Mr Johnson told us that his landlord refused to fix the hole in his wall. He couldn’t bear to let his children to endure another frigid winter with outside air seeping indoors. It was almost September.
For years afterward, I would pass this apartment complex on my hospital commute, recall Mr Johnson’s trembling shoulders with tense hands demonstrating the head-sized hole in his living room and wonder what that winter was like for him.
We sat in silence as I processed that information. I watched him crumble a piece of Kleenex, folding and unfolding the corners anxiously. That Mr Johnson fell short in his chronic disease self-management was no surprise. This person, whose clinical condition I was charged to improve, was plagued by the challenges of care giving, job insecurity, sub-par housing and community violence, all compounded by poor social support and a severe chronic medical condition. He was doing the best he could.
As an inpatient medicine clerkship student, I couldn’t relieve his non-clinical pain. Although, my team successfully convinced Mr Johnson to stay in the hospital one more night to receive another dose of bisphosphonates, I couldn’t help but feel that, despite our best efforts, we had failed him.
Later, I would read research articles categorizing patients like Mr Johnson as “underserved.” These articles would detachedly describe those difficult parts of his life (his caregiver burden, housing insecurity, and poor social support) as “social determinants of health.” Internally, I railed at the realization that the chances of maintaining health are correlated with factors over which we have such little control, such as whether we are born into a community with a grocery store or safe green spaces for exercise. Simultaneously, I rejoiced at the opportunity granted by this new vocabulary—the chance to understand and address these very real challenges shared by so many community members including many of our friends and family. My values found a professional home when, months later during my family nedicine clerkship, residents and attendings used similar language not to alienate “difficult patients” but to provide comprehensive care to human beings facing difficulties that compromised their health.
Now, a second year family medicine resident, struggling through 20-minute patient visits and workflow challenges, I’ve shed some of my naïve optimism, revealing a rougher, yet gratifying, realism. In no way do I expect to solve patients’ social, behavioral and psychological barriers to health in the clinic. Still, I am gratefully learning from patients, peers and attendings how best to assess patients’ difficulties and build appropriate care plans in order to address them together.
What an engaging story that reminds us of the humanity of medicine.
Hang onto your values and fighting to eliminate Social Determinants of Health!
Thank you for your encouragement, ERyan!
I love it, and appreciate your commitment and values and am thrilled that you thought that they had a home in family medicine! We have to try to figure out why victiim-blaming seems so functional for so many others…
Thanks for the feedback, Joshua. Agreed that it’s difficult to diagnose victim-blaming, and even harder to eliminate it. I’ve definitely been guilty of it myself.
I tend to think of the services doctors provide as coming in two parts. The first and most obvious are the things we do to directly impact on health – give medications, perform procedures, etc. The health benefits of these are obvious. However, the art of medicine plays enormously into the second part of service, and that is increasing patient resiliency. This is much harder to quantify, and encompasses mood, spirituality, connectivity, and meaning. Whatever else you could not provide your patient, you improved his resiliency so he can continue to fight against the difficulties he faces. Joining him as an ally to help with that fight goes even farther in bringing him – and all such patients – better health. Kudos to you for being such an accomplished medical artist, especially so early in your training!
Thank you for your uplifting comments, Rick! Love the way you put it-patient “resiliency” and empowerment really are the endpoints we doctors push our patients toward. Even in seemingly pure clinical interactions, we hope that patients can overcome barriers to take the meds we’ve prescribed, show up to appointments, etc.
Thanks for sharing why you chose family medicine. This was a very engaging story. It’s unfortunate that you had to have such a sad patient encounter, but I am sure that it’ll make you any amazing family medicine physician.
Wonderful story Mawusi!!
Very insightful! Thanks, Mawusi!
This is beautiful, love this!
What a beautiful story of evolution!
You make me miss family medicine. Sorta. Haha!