The Joy and Grief of Knowing Your Patient

• ethics
• hospice/palliative care
• physician-patient relationship

Rounds were routine that day; I was racing against time to finish by 11:30 AM and ticking the checkbox for noon discharges. As an early career pediatric hospitalist, my goal was to give each patient enough time but not more than what would sacrifice efficiency. After a chaotic morning, we had finally made it to the room of one of our patients with a chronic illness, who was well known to our team. A 3-year-old girl with a life-limiting illness that was progressing faster than expected. As we were going through the numbers, I could hear sounds of discomfort humming in my ear. I walked in the room and found the patient’s hair covered in vomit. Her eyes open and looking around asking for help, not having the words to say it. The sound of the children’s TV show CoComelon buzzing in the background, uplifting the wary mood that pervaded. As I finished my routine exam, I was told that the nurse needed time before she could come help this patient. I started walking out, but then got pulled back in by a distinct unease grasping my heart. I took a pause, grabbed wipes and started cleaning the vomit from the sheets and clothes. I played with her for a little bit, not wanting to leave her alone. She blew me a kiss. It warmed my heart, but somehow, I also felt fear. My analytical factual brain knew that my patient’s time in this world was limited. It was predicting heartache and pain as I was creating a bond with her. The nurse finally made her way in, and I left the room with that harrowing thought in mind. I continued to go about my day as usual and the many days after. I got the news 2 months later that she had died.

Medical school and residency teach us to always keep our boundaries with the patient. Do not get to know them too well. Do not create a place for them in your heart. It can muddy the water of clinical care and hurt when bad outcomes happen. Before starting med school, I was bright-eyed, with the passion and fire in me to create impactful relationships with patients. But the grind, the demand for perfectionism, and the assumption that the fittest would survive slowly changed my trajectory. I learned this new lesson to heart and followed it. Transitioning into residency, most days were spent behind the electronic health record (EHR). In the patient room, I focused on the disease and the plan. Despite seeing hundreds of patients in a month, I did not know a single story, nor did my patients know mine. For me, they were just diseases. I remember standing outside the room of a young girl dying of cancer, her grieving heartbroken mother holding her tight in her arms saying goodbye. Somehow, I felt nothing. I remember seeing the faces of anxious parents and terrified children, and only thinking of the tasks that I had to get done that day. It got to a point where I realized the work that I had been doing was of no meaning to me. I felt no purpose in helping patients. Everything that I was doing was so methodical, there was no room for emotion. In the quest of avoiding grief and appearing strong, I had become a robot.

Approaching the end of residency, I started reflecting on the meaningful moments I had collected along the way. To my utter disbelief, my mind felt blank and hollow. In the aftermath of this rude awakening, I decided to take a step back and changed the way I worked. I started listening. Every time I walked into the room; I learned a story. The story about the red watch. The story of the brown Labrador pet. The story of loving the color yellow. The story of the ambitious brother. The story of the new mom with no support. The story of the parent who had lost a job. The story of a parent who was struggling with their own chronic illness. The story of the parent who was fighting a custody battle. The story of the mom who had lost another child. And as I began to collect these stories, I started to recognize the patients. They were not just diseases anymore. They were children, mothers, fathers, grandparents, siblings. People living whole lives. These stories helped me find purpose back in my work. The memory of the mom who gave me my first hug in the hallway is still fresh in my mind as if yesterday. The smiles, laughter, and tears that I have shared with my patients are my happy memories for a bad day.

My journey of transitioning from a robot to an empath came with its struggles. Soon enough, I had a realization that often stories come with a cost. Recognizing patients beyond their diseases humanized them, and often struck too close to home. There was so much joy, but grief existed simultaneously. When things did not go so well, there was sorrow, there was pain. Losing patients was much harder when I knew the dreams they had for if they had lived in this world. Envisioning the casket for a child who was once able to blow kisses to me was one of the toughest moments of my early career. I was unable to think of it as only “a difficult day at work”; it was much more than that—there were pieces of my heart that I had lost along the way.

The memory of that patient’s kiss is etched in my mind. It makes me smile, but also breaks my heart. Should I have taken a step back that day? Would it have saved me from the pain? Is there a perfect balance to the humanistic side of medicine? As physicians, where do we draw the line? What is the secret sauce to love your patient, but just not enough to break your heart? Should I fear learning stories again? The lines are blurry in my mind, but I guess that is what being human is about. For now, I continue to listen as I wonder: is the joy worth the grief?

• Received for publication December 3, 2021.
• Revision received March 24, 2022.
• Accepted for publication April 1, 2022.

• © 2022 Annals of Family Medicine, Inc.