My patient sat dutifully waiting for me on the exam chair with the crinkly paper. He was reading The New York Times, cross-legged, his playful colored socks peeking out from the hems of his pants. He seemed content. His bushy gray eyebrows moved up and down in response to the article he was reading. He was more than halfway through radiation therapy for throat cancer, and despite the fatigue, sore throat, and other miserable side effects, he was enduring it with humor.
I surveyed him from the door, asking myself, “What if the treatment doesn’t end up working? What if the cancer doesn’t all go away? What if it comes back?” After more than 10 years as an oncologist and treating thousands of patients, I know I cannot fully control the outcome. But I still feel responsible for it.
I put these thoughts aside and entered the room cheerfully, genuinely happy to see him. He noticed me when he heard the clicking of my heels on the floor. “How are you today?” I asked.
“Well, I have a question for you,” he said as he folded the newspaper on his lap. “I want to know: How do you think I am doing?” The eyebrows raised. He was unperturbed as I stood in front of him with a flashlight, readying to assess his mouth for sores or infection.
“We think the treatment is going very well,” I said. I remembered to stand up straighter and eke out one more inch on my 5-feet-1-inch frame. Even at my height, I tend to slouch to eye level with my patients sitting in the exam chair, so as not to remind them of their vulnerability by looking down on them.
“I don’t want to know how we think I’m doing,” he said. “I want to know how you think I’m doing.” He was still smiling.
“Yes — I understand,” I said, thinking that he didn’t hear me the first time. “The tumor is shrinking nicely, and we think the treatment is working well.”
He persisted. “And your opinion?”
I understood now. I smoothed down the front waist pockets of my starched white coat, blotting my palms on the polyester fabric. “I . . . I think the treatment is working well. The tumor is getting smaller, and you’re managing the side effects.”
“Now, that’s what I want to know,” he said. ”And I feel better knowing that you think things are going well.” He leaned back in the exam chair as if to say, “I rest my case.”
I hid my discomfort. It was more comfortable to hide behind the “we,” inclusive of not just myself but all the other members of his treatment team. Many times, I’ve thought about why I couldn’t answer the simple question he asked me. I sought refuge in the general “we.” Only recently have I recognized that discomfort as guilt. It’s something that I didn’t learn about in medical school.
I used to think that if I just worked hard enough, if I just honed my medical skills to perfection, I could cure the cancer. I know it sounds naïve, and my sister tells me, “Fortunately, you’re not God,” but I still feel guilty when a treatment doesn’t work, especially when it causes painful side effects. This guilt sometimes keeps me from calling family members of patients who die. It’s not that I don’t think about them, but I find myself avoiding making the phone call.
A few months after our conversation, I found myself seated in a utilitarian wooden pew of a New England church. It was my throat cancer patient’s memorial service, and his family had invited me to attend. It was full of people who had come together to celebrate his life. I came on my own and was flanked by couples I did not know, most of them at least two decades older than I. Few of them knew about the details of his last year since the cancer diagnosis, the weeks he spent in the hospital recovering from the side effects, and the cancer recurrence that ultimately took his life.
His wife delivered a poignant speech, recalling how difficult it was to see him suffer through weeks of painful radiation therapy and how he retained his dignity until the end. The attendees shook their heads in commiseration. I sat there suppressing the sound of my grief by holding my breath and letting that painful ball well up in my throat until my ears hurt.
No one in that room except for his immediate family knew I was the one. I was the doctor who gave the radiation therapy that caused the side effects that were so difficult to witness. I looked around to see if anyone was looking at me, the doctor who caused the suffering.
In medicine, we are trained to reflect on suboptimal patient outcomes to see if we could have done anything differently. Through this reflective process, clinicians identify errors or areas for improvement. These potentially modifiable factors can be a source of guilt. But there are other types of guilt that can occur in the absence of a medical error. These can be just as intense and are self-imposed — consciously or unconsciously.
Guilt strikes when our medical interventions cause suffering, regardless of whether the patient is well informed or even cured of their cancer. This guilt has been described as a defensive reaction to feeling helpless when other powerful forces are dictating the outcome of a patient’s illness. These forces can be wide-ranging and include social and economic influences, limitations of the health care delivery system, and the severity of the illness. To protect ourselves from feeling helpless, some clinicians may take on an exaggerated, omnipotent responsibility for their patients’ outcomes. If the outcome is not favorable, guilt arises. There must have been something I could have done to save the patient or make them feel better, we think.
In the face of burnout and the exodus of health care workers, we need to understand the psychological aspects of their work that can take a toll on them. Recent research involving medical students shows that guilt is correlated with empathy and can lead to exhaustion and other symptoms of burnout. But the solution is not to replace empathy and compassion with cold professionalism. Rather, those qualities need to be nurtured. Teaching students to recognize the subtle emotional aspects of patient care, such as guilt, is important so that detrimental consequences don’t sneak up on them over time.
In the church, my patient’s widow stood alone receiving condolences and well-wishes from the many attendees. My eyes were puffy, but I blotted my tears away to retain some semblance of the white coat professionalism I still tried to maintain.
When it came to my turn, she hugged me tightly, “Thank you for all you did for him and for our family.”
I pulled back and looked at her. “I am so sorry,” I said. What I was really saying was, “Forgive me.”
Dr. Danielle Margalit is an associate professor at Harvard Medical School and a radiation oncologist at the Dana-Farber/Brigham & Women’s Cancer Center in Boston.