Mr. C was a patient I saw during my general inpatient month as a part of my Internal Medicine clerkship in my third year of medical school. He was a 46-year-old man with no documented past medical history who presented with yellowed skin, altered mental status, and abdominal pain. In the emergency department, his labs showed marked decline in kidney function. He was admitted to the floor, which was where I saw him. Mr. C was oriented to person, but not place or time. Nephrology was consulted immediately, and the decision was made to dialyze him emergently and transfer to the ICU. A week later, he returned to my internal medicine team. His potassium and BUN had decreased*, and he was receiving dialysis every other day. He was more alert, and I was able to elicit a history from him. I learned that he had been diagnosed with alcoholic liver cirrhosis 5 years ago. He drank a 24 pack of beer each day and began drinking when he was seven years old. He had never received formal education and made his living working on a shrimp boat. He stayed on our service for about 10 days. Eventually, the nephrology team declared him as end stage renal disease.
Throughout his stay, Mr. C was consistently unhappy with his care, and consistently made sure everyone on the team knew it. He was angry about being NPO (i.e. nothing by mouth) on the day of procedures; he complained that the catheter in his neck was uncomfortable; he wanted to go home; the food tasted bad; no one told him anything; the nurses were unfriendly; his room was too hot; his room was too cold. On and on it went. Despite his resistance to our care in every possible way, the team’s daily persistence to provide him with quality care struck me as profoundly professional.
As a member of the physician healer track, I saw Mr. C as a personal challenge. Here was a chance to use the skillset that I had striven to cultivate from year one of medical school. I had grown my patience with hours of meditation and a painstaking silent retreat. I read a book about nonviolent communication. I took courses in motivational interviewing and empathy training. I found that caring for Mr. C took all of these skills. As a medical student, sometimes, we feel in the way, forgotten, and useless. But with Mr. C, I felt like an important part of the team. I began arriving earlier so that I wouldn’t feel pressured by the time it took to hear his list of grievances each morning. I drew diagrams to explain how the kidneys functioned. I visited him after rounds, sometimes tracking him down in the dialysis wing, to make sure he understood the plan for the day. Because I had established rapport with Mr. C, he eventually became one of my easier patients to follow, despite his complicated history and prognosis. I realized his resistance to our plans was usually because he didn’t have the health literacy to understand most of what we were saying to him.
Through caring for Mr. C, I was confronted with my own bias. His negative attitudes and crude comments toward the nursing staff made me dislike him. I recognized this within myself, and I felt unsettled. Was I advocating on this patient’s behalf as strongly as I was for my other patients? According to social psychologist Dr. Judith Hall, “The physician’s liking for the patient [is] positively associated with…better patient health, more positive patient affective state after the visit, more favorable patient ratings of the physician’s behavior, greater patient satisfaction with the visit, and greater physician satisfaction with the visit.” Which means that how much I like my patients has an actual effect on their health outcomes. And yet, I could not like someone who was demeaning, petulant, and misogynistic. If I could not force myself to like Mr. C, then the least I could do was understand him. I dove into his past for answers.
Through conversations with family members and Mr. C, I gleaned that he was one of seven children who grew up in a very large and very poor family. With six brothers and sisters and two alcoholic parents, his future lacked opportunity. Growing up, he idolized his older siblings. He was given beer by his older siblings, who thought it was funny to watch him try to ride his bike drunk. A few years later, his older siblings moved away, and his family was in desperate need of money. He dropped out of high school in the 9th grade and got a job cleaning boats. Eventually, he started working on one of the boats as a shrimp farmer; the boat owner was a family friend and paid Mr. C under the table. His mother and father died a few years after that, but Mr. C’s drinking habit lived on. Mr. C may not have valued education, respect, or kindness, but he did value loyalty and family. He was cheated out of loving parents and an education.
When the diagnosis of end stage renal disease (ESRD) was made, I was almost relieved. It had been painful waiting, not having satisfying answers for Mr. C, who asked for a concrete plan every day. “At least today,” I thought, “today, I will be able to give Mr. C a plan for dialysis and discharge.” At UTMB, the hospital’s social workers are a vital part of the healthcare team. The patient population cared for here is all too often unable to care for themselves. I had gotten to know the social worker for our floor well during my rotation. As Mr. C was a U.S. citizen, I did not foresee any trouble getting him funded for dialysis. I strolled into the social worker’s office to discuss Mr. C’s future dialysis treatments.
“Not funded? What do you mean, ‘Not funded?’” I asked, exasperated. This was an unforeseen obstacle. Patients without working kidneys were in dire need of dialysis. For this reason, U.S. citizens declared ESRD are almost always eligible for Medicare funding for dialysis if they are uninsured. However, I soon found out that eligibility for Medicare funding required not only U.S. citizenship, but also evidence of having paid taxes in one’s life, a requirement that Mr. C, did not meet. He would not receive scheduled dialysis. Instead, he would be given a pamphlet on foods to avoid, a warning to present to the ED “as symptoms arise,” and a bus ticket home. I refused to believe the news. After days of intensive care, and hours of deeply investing in Mr. C as a human being, his story of overcoming obstacle came to a screeching halt.
That same morning, I picked up a new patient who was, coincidentally, also admitted for emergent dialysis. Like Mr. C, he been declared ESRD, but was ineligible for Medicaid funding due to his undocumented immigration status. My new patient was shaking, sweating, confused, and utterly ill. He was an all too vivid mirror of Mr. C’s future troubles.
In truth, Mr. C’s prognosis was unfavorable from the start.
- A quarter of ESRD patients on dialysis die within the first year of treatment, with only a 35% five-year survival rate. Emergent dialysis, however, has a far worse outcome.
- A study at UT Southwestern demonstrated that patients receiving emergent dialysis were only dialyzed on average 1-2 times per week, which was below the standard of care for ESRD patients.
- Treatment with emergent dialysis was also associated with overall worsened physical and mental well-being, as compared to ESRD patients treated with conventional hemodialysis.
- Furthermore, emergent dialysis not only results in substandard care and lower quality of life, but it is actually more expensive. According to a study conducted by Baylor College of Medicine, emergent dialysis in Houston, Tx was associated with an annual cost of $285,000 per year, as compared to a $77,000 annual cost for scheduled hemodialysis. That’s a $208,000 difference, equal to the average annual tax burden of 19.8 people in this country.
I will always remember my last interaction with Mr. C. My resident, knowing I was interested in a surgical field, asked if I would like to pull out Mr. C’s Quinton catheter. Naturally, I jumped at the opportunity. After pulling the catheter out, I held pressure over the site on his neck for 15 minutes to prevent bleeding. Throughout his admission, Mr. C had consistently protested his long hospital stay, relentlessly asking when he could go home. During that 15 minutes, I think it dawned on Mr. C how dismal his future appeared. “Am I going to die?” he asked me. I put my free hand in his, and he grabbed my hand back. “Hell is coming for me, I can feel it.”
Those words rang in my head for days.
Caring for Mr. C was the culmination of my third year of medical school rotations, and I found it as fulfilling as it was unfulfilling. Mr. C was a difficult and time-consuming patient, but for me, he represented the validation of the physician healer track and highlighted the importance of the art of medicine, which takes effort, practice, and finesse. Mr. C is also a reminder that our healthcare system is imperfect. It is unacceptable to provide inadequate care at a higher cost. And from my conversations with other medical students, residents, and faculty, stories like Mr. C’s unfold on a daily basis at UTMB; to stay silent would be unethical.
We can do better, we should do better, and we must.
*potassium and BUN are normally filtered by the kidney. Patients without working kidneys rely on dialysis to get rid of these wastes.
- Hall, J A, et al. “Liking in the Physician–Patient Relationship.” Advances in Pediatrics., U.S. National Library of Medicine, Sept. 2012.
- U.S. Renal Data System. USRDS 2013 Annual Data Report: Atlas of Chronic Kidney Disease and End-stage Renal Disease in the United States. Bethesda, MD: National Institute of Diabetes and Digestive and Kidney Diseases; 2013.
- “Financial Help for Treatment of Kidney Failure.” National Institute of Diabetes and Digestive and Kidney Diseases, U.S. Department of Health and Human Services, 1 Mar. 2014.
- Opportunities for Funding Dialysis-Dependent Undocumented Individuals.” Clinical Journal of the American Society of Nephrology, 1 Aug. 2016.