Decompensation: A Student Poses the Question of How Best to Advocate for Patients with Alcohol-Associated Liver Disease

When I first laid eyes on Mrs. D, she was asleep in her bed. The room was filled with nothing but the quiet sound of her breathing. It was still early in the morning. “I’m sorry,” I murmured, “I need to listen to your heart and lungs.” She stirred but did not respond. Her protuberant belly, jaundiced and marred by patches of purple bruises, was exposed when she lazily pulled the sheets over her head.

Later, I went back to Mrs. D’s room to introduce myself. Sunlight streamed in through the bay window. She was sitting up in bed, chatting away with her personal care attendant. Except, it was not a conversation I was expecting to hear. “You ought to get ready now, you know,” she exclaimed, “you’re going to be late for the bus.” She turned to me when she noticed my presence and said, “Oh, there you are! You really need to tell her that she needs to go to school if she wants any cookies after dinner.”

The interesting thing about end-stage liver disease or decompensated cirrhosis is that it affects so many parts of the body. The brain is no exception. Mrs. D had fluctuating cognition from her decompensation, known as hepatic encephalopathy. This meant that she was not always checked in. As I got to know her, one of our favorite routines was to go over the four orientation questions together. What was her name, what was her location, what was the date, and why was she here? To the last question, Mrs. D, without fail, would reply, “It’s because I almost fell and hit my head.”

True, but not the truth. The truth is that this was Mrs. D’s fourth hospitalization for her liver disease in the past two years. Despite UMass Memorial being one of the main transplant centers in Massachusetts, Mrs. D was not on the transplant list—and would not be— until her alcohol use was in remission.

“But I get bored,” she said to me, “and I forget. No one’s there to remind me.”“You can’t forget,” I say, firmly.She swallows and looks away.

I saw myself as one of Mrs. D’s biggest advocates in the hospital. As the medical student, I had far fewer patients to see and much more time. I knew I was one of her favorites, and I consistently visited. But, when it came to conversations like these, I found myself frustrated. My time, empathy, rapport building, and continuous visitations were all but wasted efforts. Every day, they drowned themselves in the vast void that was Mrs. D’s pathological forgetfulness, and neither she nor I could help it.

Ever the hopeful medical student, I sat with Mrs. D a few days before her potential discharge. I explained to her in more detail than ever before what I knew of cirrhosis and its devastating toll on the body. I had just attended the internal medicine grand rounds on caring for cirrhotic patients the day before. I knew her two-year survival rate was no greater than 50 percent. Naively, I wondered if I could change that statistic for Mrs. D. If I could only make her understand, teach her about her discharge medications, explain the warning signs of decompensation, and teach her what to do when she needs medical attention.

As I spoke about her continually declining quality of life and likely frequent hospital visits, her ever-steady, yellow eyes watched intently. She responded, “But I’ll be all better, right? And I promise I won’t drink anymore.”

Mrs. D had a loving husband, Matt, who was a long-haul truck driver. He understood and shared my frustrations. He remarked that while he was thankful for Mrs. D’s improvement, he thought that she, even at her functional baseline, would inevitably need frequent supervision.

Matt was right, the occupational therapists agreed. As discharge loomed closer, the social worker scrambled to find Mrs. D a long-term care facility that could take her. Unfortunately, the facilities were all uncovered by their insurance and way out of budget for Matt. As the days stretched out, Mrs. D, who was perpetually circling her own delirium, felt physically better and asked me time and time again when she could leave. Meanwhile, Matt, who still visited every day, paced the room, as his easy and cordial smile slowly slipped from his face.

Eventually, out of options and with an ever-growing medical bill, they left, against medical advice.

Many lessons came with taking care of Mrs. D. I remember most the sense of helplessness in the face of pending expiration. Despite the science clearly demonstrating the short time Mrs. D had, we were hopelessly stuck in place. Even after her discharge, Mrs. D challenges me: What interventions can we systematically implement in the hospital so that patients with cirrhosis and their families are better equipped with the knowledge on how to proceed in the short years following decompensation? How do we work with our knowledge of the disease course to eliminate preventable causes of decompensation, offer support for caregivers, and produce a realistic care plan together? Moreover, what do we do about a patient’s social determinants of health once we identify them? Our team never gave Matt a solution to Mrs. D’s need for continuous supervision. We could not help him with financial difficulties either. I shared some online resources with Matt, but that felt mediocre. Mrs. D’s loneliness, which perpetuated her drinking, went unaddressed.

The clock for Mrs. D’s re-hospitalization started ticking as soon as she left her hospital room. Undergraduate medical education rightfully emphasizes active listening and quiet empathy, and I am grateful for the times I was able to listen to Mrs. D share her feelings. The next step is to address the practical limitations providers face daily so that medical student empathy can continue on and be a part of us as we enter residency and beyond.

Danielle Li holds a BA in art practice from the University of California, Berkeley. She is a current third-year medical student at UMass Chan Medical School and is interested in Plastic Surgery. She can be reached at danielle.li5@umassmed.edu