As a new fellow, I met a young man during his initial presentation with Burkitt lymphoma. He was a fun-loving teenager who enjoyed computer gaming, lived for music and rapping, and was starting college. His mother had died of cancer a few years before; his dad was struggling to balance work, family, and the commitment necessary to cure his son.
Given a diagnosis with a 95% cure rate, our team had high expectations for his future. Unfortunately, his disease was aggressive, and not even intensive radiation could keep it at bay. This was the first time I had to tell a patient he would die of his cancer. And so began my journey of saying goodbye to this incredible patient.
No amount of preparation can get you ready for this task. As the patient entered the room, I felt this overwhelming sense of doom, like the captain of an ill-fated ship. His tone and demeanor clued me in to the fact he knew way more than I thought. We discussed his recent scans, all the while my internal motor was revving: “Tell him, tell him, just tell him.” Looking right into his eyes, with a calm that was a stark contrast to my mental turmoil, I said: “I’m not sure that any further treatment we consider will be able to cure you.” And then silence. I felt like I had just said goodbye. I remained committed to truth and honesty, and we pressed on.
I asked the patient if he had any sense of what he thought we should do. He was now 18 and could make the decisions regarding his care. Poised, he said that he had fought a tough battle. “If this is my path, I’m not going to fight it.” And then poignantly he continued: “While I love my life and family down here (pointing to the ground), I also love my family up there” (pointing to heaven). That statement moved everyone in the room. The care team gently exited, leaving father and patient together, cradled, crying. The difficult decisions had been made.
In a shift from cure to comfort, his wish was to go home, and we worked to make that happen. It felt as if we shared another goodbye.
Once he was home, I wanted to call every hour to make sure he and his father were OK, but of course did not. I had offered to be there for them if and when they needed, but would not pester them. I respected their space, wanting them to enjoy whatever time remained. As I distanced myself from this difficult situation, I faced yet another type of goodbye.
Due to worsening pain and headaches, the patient was admitted to the hospital several times. At each discharge, I’d say the words “goodbye,” never knowing when that ultimate moment would be. On his final admission, I could sense something was different. He grabbed my hand and said, “Jason, I want to go home.” I was caught off guard by the double meaning in that phrase. I got it. I heard him. I looked at his dad and realized he was in agreement. There would never be a more perfect moment to grant this patient his wish of a goodbye, on his terms. As he got in his dad’s car, I put my arm around him and said goodbye. I knew this would be the last time.
He died two days later, peacefully at home, in his father’s embrace.
I was honored to attend his funeral, which in the strictest sense, is the ultimate goodbye. The funeral enabled me to see how much more he was than his lymphoma. I saw a teenager full of hopes and dreams; his true self. I took comfort that, because I had been honest about his prognosis, I enabled him to say his goodbyes and leave this earth without regret.
My colleague and I shared many emotions during the ride back from the funeral, including confusion, sadness, and anger. But we ended up achieving a feeling of gratitude. I am indebted to this patient and his family for teaching me and reinforcing key parts of my job. Patients are not a set of checkboxes to complete. When medical management fails, our most privileged and meaningful work begins. When patients need us, we offer support; in times of crisis we can offer reason; and when a patient nears the end, we’re present. Saying goodbye is not “just something we do,” it’s a gift—a simple reminder to stop, to listen, to hear, and to be mindful of a life that has impacted us forever.
Jason L. Freedman, MD, MSCE, is an attending physician in the Division of Oncology at Children’s Hospital of Philadelphia.
Image by Phoebe Cunningham, an MS1 at the Perelman School of Medicine.
