Abstract
I
My own life experiences taught me about caring for individuals with serious illness. My grandfather's unexpected death during my first year in medical school introduced me to death through a new lens. During my visits to the hospital, I could feel his pain and his fear. It filled the room and the space between us. The doctors still seemed foreign then, and their priorities felt separate from mine. Two years later during my clerkships, I found myself hoping to act like a good doctor, with confidence and authority. But I also felt a need to respond to the emotional pain of the patient, which often was forgotten on our rounding to-do lists. This year, I also spent hours in hospice alongside my aunt, a second mother to me, as she passed away from brain cancer. I carried these heavy memories of my grandfather's final breaths in his hospital bed and the slipping away of my aunt's mind and body from cancer to my palliative care education experiences. They have also been part of my maturing as a doctor.
Early on a Monday morning, I walked to the hotel conference center for the course. As I ascended the stairs to the meeting room, I thought about my acting role and realized how much I actually empathized with the character Sam. In contrast to my feelings as a first year, I finally saw Sam as a patient through the lens of a doctor. I saw her as a “communication challenge” and understood how complicated the care of patient like Sam would be from the perspective of a clinician. If I paused to consider this as a first year, it would just have been a theoretical concern.
I entered the room as Sam and settled into a seat across from the physician. A dozen other clinician learners gazed at us as we began the role play, including some of my professors. Despite the intimidating atmosphere among individuals I revered and respected, I felt comfortable improvising as Sam. Each clinician took their turn interviewing me. My directive was to act distant, resistant, and complicated.
As the doctors and nurses continued with their interviews, focusing on their techniques, I was increasingly struck by how much this 18-year-old high school student was going to lose. Her entire future and identity were being stripped away. During my clerkships, I had observed similar terminally ill patients realize their own fragility and the sadness of their fate. As one clinician repeatedly asked Sam, “How are you doing,” “How have you been feeling,” and “When will you be graduating?” I felt particularly hopeless, misunderstood, and alone. I grew tired of giving superficial, emotionally evasive responses, which didn't seem to offer much besides distracting us from the tragic inevitable.
To my surprise, one interviewer broke through. She took the role play as an opportunity to specifically focus on my feelings rather than my words. First, she asked for permission to sit with me. She followed by asking concrete questions: “Did anyone come with you to the visit,” “How many visits have you had so far,” and “Who do you usually see for your appointments?” The questions may not impress when written on a page, but in hearing them I suddenly felt more connected to her. She paused often, and her silence felt attentive and helpful. Over a span of about 10 minutes, we sat quietly for what probably seemed like hours to her, but felt like crucial minutes for me to gain trust in her. During the debriefing that followed, I learned that this clinician's child suffered from a chronic illness, and I wondered how much of her skill came from suffering alongside her child.
During my clerkships, I witnessed the suffering of my patients. I stood at their side on rounds or in the operating theater. I held a patient's hand as he died from lung cancer, and listened to another patient as she grieved a spontaneous abortion. My understanding of empathy deepened during the year, and I learned it is no simple task to combine textbook medicine with doctoring of the whole patient. Our intellectualization can be an avoidance, but its seduction is everywhere in the clinical realm. Outside each quantified vital sign, carefully tracked laboratory value, and organ managed by its own specialist lies a deeply complex, unified patient whose feelings and meanings are often lost in compartments isolated from the whole. Empathy is not dispensed in unit doses. The textbook does not always have the answer.
The final clinician, frustrated to have reached a wall with me, finally risked asking something really important. He said, “Is there anything good in your life, or is life just all falling apart?” That blunt question really resonated with me. I could imagine Sam thinking, He actually gets it, and he is willing to call it like it is. I realized the importance of openly acknowledging personal struggle, particularly for adolescent patients. At times, pretending that everything is okay is just that—pretending. Trust is founded upon honest communication, and I discovered that honest descriptions of a grim situation carry the highest potential to build a strong foundation for a patient–doctor relationship.
Acting like a patient among clinicians who were intent to connect, I learned how challenging building trust with patients can be. Participating in the palliative care education experience allowed me to appreciate the importance of listening and making room for feelings when taking care of patients. As a first year, I expected to learn skills from a textbook. But now I see that the doctor I aspire to be relies on taking risks for presence and empathy.
Footnotes
Acknowledgments
The author gratefully acknowledges the mentorship and editorial assistance of Dr. Richard Goldstein (Boston Children's Hospital) with this article. The author is also grateful to the Palliative Care Education and Practice (PCEP) training course at the Dana-Farber Cancer Institute.