I had never seen someone quite so helpless as Allen*, so away from the grasp of any type of comfort. When I walked into the room, the 20-year-old cancer patient was sitting on the exam table with his legs crossed. He was looking down at his electronic gaming device, pressing buttons randomly, perhaps in an effort to avoid making eye contact with anyone in the room-especially me. The thinning hair on the top of his large round head, his long and scruffy beard covering his chin, and his thin-rimmed glasses seemed odd in juxtaposition to his windbreaker pants, big white sneakers, and toy. It was as if he was both a young child and an aging old man at the same time.
I wanted more than anything to speak with Allen, though I’m not sure what I would have said if I had been given the opportunity to make anything more than small talk. I wanted him to know that I understood what it felt like to dry heave for hours during a chemotherapy treatment, how strange it was to have all your friends be afraid to talk to you and to have your mother treat you like a five-year-old again. I wanted him to know that I understood what he was going through far more than most people did. But that wouldn’t have helped Allen, because while I was standing before him, a medical student following my passion, he was dying.
I resorted to trying to make him smile. Allen, however, did not even seem annoyed, as if my presence was not even significant enough for such a thing. He seemed angry at himself, his situation, and his tumor. But the worst part about Allen’s situation was not his appearance or his sadness or even the fact that his pelvic sarcoma had relapsed for the third time and was only going to get worse. The worst part about Allen’s situation was his mother.
Dr. Stevens* had warned me about Allen’s mother earlier that day, describing her as “unable to handle her son’s reality,” and I had wondered to myself, “Is anyone able to handle that kind of reality?” Now, in the room with Allen and his mother, I understood the real problem. At odds with her son’s uninvolved and “I-don’t-give-a-rip” attitude, Allen’s mother continuously bombarded Dr. Stevens with suggestions for treating her son based on her own internet searches. She spent at least an hour threatening to take Allen to other countries to become a part of clinical trials that “actually worked.” It was her anger that was more apparent than anything else. She had so much anger building up inside of her small five-foot frame that she verbally attacked Dr. Steven, blaming her for the rapidly proliferating tumors inside of her son’s body.
It was incredibly difficult for me to listen to a patient’s mother reprimand and lecture Dr. Stevens. Though she had every reason to be angry that there was no cure for her son, I also understood that her anger was not what Allen needed. It was equally as frustrating to listen to her list off the whole gamut of phase I clinical trials that she had found online, all of which she believed were being hidden from her son. Although Dr. Stevens patiently explained that phase I clinical trials were not based on efficacy but based on dosing alone, this did not change the mother’s insistence to look into everything from “viral injections of Streptococcus” (which is actually a type of bacteria) to the use of marijuana to “slow the tumor’s metabolism.” Dr. Stevens patiently nodded, jotting down notes and promising to examine all of these studies herself.
As I stood in the corner feeling useless alongside the automatic paper towel dispenser, I couldn’t take it anymore, so I chipped in. “I remember when I was sick, my mother and I did so much research, and there is just so much information on the internet that it’s all very overwhelming and misleading.”
Within seconds I realized I had made a mistake.
Allen’s mother’s expression transformed into one of both surprise and disgust. “I don’t know what you had, but it was nothing like what my son had. My son relapsed. You did not. You could not possibly understand.”
My intention had been to explain that I understood how much information was out there but that I trusted that my physician and the doctors at this hospital. What I’d wanted to do was remind them that they were being treated by experts that had access to even more information than they’d found online. But instead, I had offended a woman whose little boy was dying right in front of her. In that moment, I felt deeply ashamed and embarrassed. Never before had I felt so hurt and responsible for hurting someone else all at the once.
After explaining that I in no way meant to compare myself to her son, I apologized and resumed silence for the remainder of the appointment. I watched and learned as Dr. Stevens kindly and lovingly listened to the mother continue to spout off the names of bizarre experimental drugs. And without ever arguing with Allen’s mother, Dr. Stevens managed to facilitate a peaceful appointment. Dr. Stevens later explained that she found it necessary to allow family members to have their turn to rant because if they didn't do it in the clinic, they’d do it even more at home. She couldn't allow herself to take anything the family did or said personally. Their anger and frustration and even rudeness came from a place of desperation and love for Allen.
I do not want to be the type of physician who attempts to erect an emotional barrier between themselves and their patients, but I now understand that there are certain times when my feelings don’t matter—because the feelings of my patients and their families matter more. There will be times when, as physicians, we just have to listen and accept the words that patients or their parents throw at us, because sometimes listening is the most important thing we can do.
*Names have been changed to ensure confidentiality
Maggie is a first year medical student from small-town Mississippi who serves as a Mayo Medical School Class Representative. She is interested in end-of-life care and is a collaborator on a clinical research project in the field of pediatric hematology. She hopes to one day have a career in pediatric hematology and oncology.
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