If you had told me when I was a first-year gastroenterology fellow that I would be doing research in palliative hepatology, I would have laughed. As I reflect on my unexpected journey in palliative hepatology, there are a few key moments, and important lessons, that stick in my mind.

I knew I wanted to become a hepatologist during medical school. I loved learning about liver pathophysiology during my pre-clinical years and was further drawn to the field during my clinical rotations at Barnes-Jewish Hospital in Washington University School of Medicine in St. Louis. My attending during my subinternship was Dr. Jeffrey Crippin, a transplant hepatologist who was a past President of the American Society of Transplantation. I learned so much from Dr. Crippin on how to provide the best care to patients with decompensated cirrhosis, and I credit him with solidifying my love of hepatology. He was hugely influential in my decision to become a transplant hepatologist.

My love of hepatology continued into my internal medicine residency and gastroenterology fellowship training at Massachusetts General Hospital (MGH). I entered fellowship planning to conduct translational research in viral hepatitis; however, during my first year as a clinical gastroenterology fellow, I was struck by the physical and psychological suffering experienced by patients with advanced liver disease. This is a patient population with significant morbidity and mortality that has a median survival of only 2 years in the absence of liver transplantation; however, they often receive intensive care at the end of life and underutilize palliative care services despite their poor quality of life and prognosis. I saw directly the immense unmet palliative care needs of these patients and their families and struggled with the lack of data available to inform our care to alleviate their suffering. Specifically, there was a lack of models to deliver high-quality palliative and end-of-life care for patients with advanced liver disease. In turn, I became drawn to the field of palliative care during my first year of fellowship training.

After the first year of my gastroenterology fellowship, I returned to the internal medicine program for my chief residency year in July 2016. It was during this year that I developed the goal of building a palliative care research agenda in hepatology; however, I quickly realized a key problem: I could not find anyone in hepatology who had palliative care as a primary focus of their research program. Even more concerningly, when I performed a quick PubMed search using the terms “palliative care” and “cirrhosis,” I found that fewer than 10 manuscripts had been published on this topic in the previous year (2015). Importantly, these manuscripts were all reviews or small observational studies—none were interventions or trials. I was worried about the risk of entering a new research space without a dedicated hepatology mentor.

In November 2016, I read a randomized clinical trial published in JAMA that showed that inpatient palliative care for patients undergoing stem cell transplantation resulted in a better quality of life and symptoms compared with standard transplant care [1]. The first author of this study, Dr. Areej El-Jawahri, was a bone marrow transplant physician who had also been my attending when I was a senior resident on the Oncology Service. I loved my oncology rotation as a senior resident because of her dynamism–she is an amazing and engaging teacher. I made the decision to send her a fateful email:

November 17, 2016

Hey Areej,

I hope you are doing well! I have been really impressed with your research thus far and I wanted to see if there is any time in your busy schedule to schedule a meeting for research/career advice? I am in the process of thinking about my research project for my research years in GI fellowship and would love to have your input.

Best,

Nneka

When I first met with Areej, my goal was to get her advice on how I could build a research pathway in palliative hepatology. During our meeting, I shared with Areej my deep distress regarding the lived experience of patients with advanced liver disease due to their high physical and psychological symptom burden, poor quality of life as they are awaiting transplant, and poor quality end-of-life care. I also shared with her the complicated nature of liver transplantation and integrating palliative care into this setting. As I was talking and sharing my concerns with Areej, I saw that she was nodding approvingly. When I shared with her a list of potential research projects that I wanted to complete during my research fellowship, she smiled. She then pulled out a list of her previously completed and ongoing research projects to show to me; I soon realized that our lists were surprisingly similar.

I had gone into this initial fateful meeting with Areej primarily to seek research advice from her. What we both quickly realized during our meeting was that while we were taking care of patient populations that on paper could not look more different–patients with hematologic malignancies and patients with advanced liver disease–their lived experiences could not look more similar. Both of our patient populations have high symptom burden, poor quality of life, unpredictable illness trajectories, and the option of transplantation as a possible cure. At the end of our meeting, Areej invited me to join the MGH Cancer Outcomes Research and Education (CORE) Program, which focuses on palliative and supportive care research, and ever since she has been my primary mentor.

In addition to Areej’s mentorship, I have been lucky to have received critical support from senior hepatologists whom I deeply respect. When I began to share that I was thinking about pivoting from translational research in viral hepatitis to clinical research in palliative hepatology, I received a lot of well-intentioned discouragement from colleagues who were worried that this research would be high risk, not fundable, and not of interest to hepatology society organizations. It was the encouragement of Drs. Raymond Chung, Jules Dienstag, and Larry Friedman, with whom I met individually and who each shared with me that this was an important area of much-needed investigation in hepatology, that allowed me to move forward with courage. I am forever grateful to them for their deep support and sponsorship. I was able to secure my first research grant, a Clinical Research Pilot Award from the American College of Gastroenterology, in 2019 during my research fellowship. In 2022, I served as a co-author on the first-ever practice guidance on “Palliative Care and Symptom-Based Management in Decompensated Cirrhosis” from the American Association for the Study of Liver Diseases [2]. In 2023, I opened enrollment of hospitalized patients with advanced liver disease into the LiverPal randomized clinical trial (https://clinicaltrials.gov/study/NCT05998330) for which I serve as Principal Investigator.

I end with a few pieces of advice for trainees as I reflect on my journey. First, you never know who may play a deeply important role in your life in future; always try to remain professional and kind. Areej shared with me that my performance as a senior medical resident during our oncology rotation was a key reason that she was open to mentoring me. I often wonder how much differently my research journey would have been had I performed differently. Second, be unafraid to send an email to meet with individuals whom you respect in the field for advice, no matter how senior they are. One email could change your life. Third, pick your research mentor based on their science, not solely based on their specialty. Last, and most importantly, let your research go where your patients take you.