A few weeks into my inpatient medicine clerkship, I was asked by my resident if I wanted to see a “liver bomb”. “This would be great for your learning, a bread-and-butter diagnosis.” I delved deep into Mrs. Vega’s* chart – 70yo F with end-stage liver disease due to cryptogenic cirrhosis transferred from ICU to step-down. Presented with altered mental status and persistent hypotension requiring vasopressors. Her lab values revealed significant electrolyte derangements, acid-base disturbances, pancytopenia, transaminitis, and loss of synthetic liver function.
I gently slid open the glass door to her room, careful not to make too much noise. Mrs. Vega appeared somnolent. Her normal coloration was masked by a tinge of foreboding yellow that stained her skin and eyes. Her mumbling respirations appeared uncomfortable as her diaphragm fought the force of the excess fluid filling her protuberant abdomen, which was lined with serpentine vessels. Her arms and limbs were splotched with large bruises, not resulting from trauma but instead from inadequate production of clotting factors and platelets. Despite being new to clinical rotations, I immediately knew that her prognosis was poor.
Her daughter, who was present at the bedside, filled me in that her mother had become progressively less alert in the days leading up to her hospitalization. It began with losing awareness of passing moments then full days at a time, as her essence faded into a drowsy haze. It pained me to imagine how much frustration and anguish Mrs. Vega and her family had suffered through the progression of her illness, all the while not knowing what was causing her liver to fail. How has her daughter and family been able to manage at home? Do they have support systems in place? What do they understand about their mom’s condition? I redirected my focus towards Mrs. Vega’s immediate medical needs and informed her daughter of the plan to increase lactulose, in an effort to expel excess ammonia which could be exacerbating her hepatic encephalopathy.
Over the next week, Mrs. Vega became more responsive with each passing day. She was soon able to understand that she was in a hospital and was able to verbalize if she was having pain or discomfort. However, just as we began to gain a sliver of hope that she might stabilize, she rapidly deteriorated overnight and became unarousable.
Her labs revealed a steady uptrend in her creatinine and a downtrend in urine output.
I looked at the computer in disbelief – She was finally getting better. How can her kidneys be failing too? Soon, she was started on inpatient dialysis at least every other day and would have brief moments of hazy consciousness as her uremia temporarily improved; however, her cognitive state waxed and waned as each organ exacerbated the strain on the other, further accelerating the failure of both.
The only treatment option left was to look into a combined liver-kidney organ transplant, though we knew the odds were nearly impossible. Only about 500 combined transplants are done yearly across the entire US. Nevertheless, we pushed forward in seeking a transplant evaluation with our interdisciplinary team that contacted the three big transplant hospitals in the area. It was then we hit an unforeseen roadblock that made these already narrow odds actually impossible – Mrs. Vega was uninsured and undocumented. Due to structural causes that do not allow her to have access to adequate healthcare, she was not accepted for an evaluation. The sole treatment that could save her life was no longer an option.
Having witnessed Mrs. Vega fight to hold onto her life for over a month, I felt defeated as we prepared to have a “goals of care” discussion with her family. At this time, I couldn’t help but wonder if we were doing more harm than benefit since these short-term measures would only buy time until a transplant that wouldn’t come. Mrs. Vega spent hours connected to the cumbersome whirring dialysis units and a very aggressive lactulose regimen via a rectal tube 4 times a day. What if doing less would actually do more for her?
I looked around for a quiet and private space to hold this conversation with Mrs. Vega’s daughter; however, there was no such space in the bustling step-down unit, filled by the sounds of monitor alarms, unintelligible moans and groans, and the shuffling footsteps of the many attentive healthcare staff. The resident and I guided Mrs. Vega’s daughter to the least busy corner we could find and somberly informed her that tragically her mother would not be considered for transplant. A wave of intense emotion swept over her face as she cried in frustration that there must be something else we could do. We tried our best to comfort her as we then shared that perhaps the next best thing we could do given these terrible circumstances was to do less. Our medical management so far had been aggressive and grueling, yet unlikely to improve the outcome. We had tried everything we could, including fighting for a transplant but Mrs. Vega wouldn’t even be considered simply because she did not have enough resources when she left her home country of Guatemala to start a new life in America. Her daughter, who had watched her mother’s condition decline day after day, reluctantly expressed understanding that the next best thing for her mother among these limited options would be comfort care and transition to hospice. We slowly tapered her off chronic medications, unscheduled further medical testing, and focused on only keeping the interventions that would improve her quality of life.
On my last day of the rotation, after finishing my notes and reporting back to the residents, I lingered behind in the workroom attempting to memorize a few roughly translated sentences in Spanish. Gracias por confiar en mí y dejarme ser parte de su equipo médico. Ha sido un gusto hablar con usted todas las mañanas. Espero que se sienta mejor y sin dolor a partir de ahora.
I walked down the hallway to her room, all the while rehearsing these lines in my head so that I could properly thank her for trusting me to be a part of her medical team. She was sitting upright in bed eating a spoonful of bland pureed sweet potato, a part of her no-salt renal diet, and turned to face me as I entered the doorway. There was no dialysis machine or invasive line in sight. I expressed my well wishes, though I was not certain she would recall the time we shared given her altered mental status through the course of her admission. She relayed how she was longing to go home, which made me to wonder if perhaps she knew she was in the hospital, but then she quickly diverted to the awful food at this “restaurant.” I agreed that I hoped she could go home soon and apologized that the meal did not satisfy her palate. Although she was disoriented and confused as ever, she laughed and smiled, revealing a glimpse of the person hidden under the guise of her medical condition. I hoped that she would continue to find simple joys in her everyday life, not burdened by intensive medical care in the hospital, though I still felt frustrated and unsettled that she never even had a chance at the only life-saving treatment because of structural inequities in healthcare. As I left the room, I realized that while her prognosis had not changed, she would hopefully feel more comfortable during the time she had left.
* Name has been changed to protect patient identity and information
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Tiffany Fan
Tiffany Fan is a current EM-bound fourth year medical student at UCLA who uses writing as a way to reflect on meaningful patient encounters. As she continues on in her training, Tiffany hopes that these stories will serve as a constant reminder of what initially drew her to medicine -- the humanism, compassion, and connection that we share with each patient we have the privilege to serve.