September 12th, 2018
Good Things Take Time
The day I met you was early in my second year of Internal Medicine residency. After much of my internship had been spent on arduous inpatient rotations, I was finally ready to lead my own team of young doctors and students on a high-acuity wards service. Yet, in my continuity clinic, I was still fresh, insecure, and naive. The day I met you, your abdomen was swollen, your eyes were yellow, you were drowsy and seemingly apathetic. Years of heavy alcohol use had sclerosed your liver, leading to hepatic disease in its final stages. You were my patient, I was your new primary care doctor — and I didn’t speak your language. We fumbled through the interpreted conversation, hindered by your lethargy, my inexperience, and a 20-minute visit time. We talked about abstinence from alcohol, and we talked about liver transplant. I got you what you needed: diuretics and a paracentesis for your ascites, lactulose and rifaximin to remove the toxins clouding your consciousness, a referral to hepatology to start the process of future transplant evaluation. However, what we both needed was more time.
I would see you in clinic for many more visits in the ensuing months. I would review my check boxes of primary care for cirrhosis – slow disease progression, check; prevention, screening, and treatment for complications, check. All the while, the prospect of transplantation and new life hung in the air like an apparition we could partially see but which remained out of touch. After your second relapse and hospitalization, we met in clinic once again. I remember that your mind was sharp that day. I was running behind, with several patients sitting restlessly in the waiting room, but in that moment, it was just the two of us. In the hour that I didn’t have, we talked about “goals of care.” You told me you wanted a chance at a new liver, I told you about the challenges of both transplant candidacy and surgery, you told me you understood. You told me you wanted to keep pursuing all possible care, you told me how much you missed your family back in Central America. I told you we would stay the course towards transplant, but I also promised you I would do everything within my means to get you back home — even if just to say goodbye. After 13 months as patient-provider, this moment was the first time we actually heard each other. You trusted me. We embraced after that visit and every visit thereafter. But what we both needed was more time.
In the fall of my last year of residency your kidneys began to fail. The pressure in your portal system was pushing up to 12 liters (over 3 gallons) of ascitic fluid into your peritoneal space. Yet, the frequent paracenteses needed to alleviate your discomfort added more strain to your kidneys that were already starved for perfusion. The rise in your creatinine mirrored a rising MELD score, indicating a looming mortality. By the spring, it was time for an evaluation by the liver transplant team. A day you had been waiting for finally came — you were seen, you were tested — you were deemed not a candidate. The clock was reset — it would be another 6 months of documented sobriety and social support before you would even be reconsidered. The news was devastating for you and your partner. I was away on another inpatient rotation, only peripherally involved via messages that accumulated in my ever-expanding inbox.
You would go on to endure 6 more hospitalizations over the next 3 months, spending more time boxed within four sterile walls than at home in your own bed. You would encounter more than 30 primary and specialty physicians and have multiple goals-of-care conversations, which would at times leave you confused and frustrated. I was losing steam, closing out the end of residency training and preparing to embark on a new journey as chief. You needed me, and I needed more time — time to reflect on your clinical course, time to reconcile your prognosis and goals of care, and time to help you make sense out of the madness.
When I saw you in clinic a month ago, you were headed towards yet another acute hospitalization for renal failure. This time, I was present. We met together with the inpatient teams, and I could say to you with confidence, “it’s time to go home.” You were brave and magnanimous — you found humor in a dire situation, and the love shown by you and your devoted partner was inspiring. We met for one last clinic visit after this. You told me you were getting ready to return home to Central America. After we embraced, you winked at me and said, “I’ll see you next time.” Three weeks later, you died at home surrounded by your family. You were out of time.
In my role as ambulatory chief, I oversee trainees who maintain their primary care clinic at our county hospital where we care for a population of incredibly diverse and vulnerable patients. I routinely recognize the frustration in residents who are expected to provide necessary care to medically and socially complex individuals, in a system that increasingly restricts our time for those who need it most. What I tell residents is that primary care is an endurance sport. The road is long and the effects that we see in clinic come much slower than what we’re used to on the inpatient side. Yet despite its challenges, primary care uniquely positions us to be our patients’ best allies, advocates, and defenders in a healthcare system that in many ways is unjust – what we need, however, is more time to do it right.