This article was originally published on the JAMA Network by Dr. Molly Taylor, an attending physician for Seattle Children’s Cancer and Blood Disorder Center and a researcher who runs the Biobehavioral Oncology Research Program in the Ben Towne Center for Childhood Cancer Research at Seattle Children’s Research Institute.
[Content warning: Please be aware this article discusses grief and loss. Support yourself and loved ones — view emotional and crisis support services via the Washington State Department of Health.]
I’m sitting in my parked car, rain streaming down the windshield, tears streaming down my face, scouring the internet for funny cat videos. Those video clips can make me laugh even in the saddest moments, and throughout my training as a pediatric oncologist, those internet cats have come to the rescue countless times. On this day, I called on them to help me get through the memorial service of my 8-year-old patient Rachel, who had died the week before.
Rachel’s parents asked if I could share a few words about their daughter as I knew her: the quiet, science-loving girl with an amazing sense of humor and a merciless tumor. And could I please wear something tie-dye. Rachel was very clear before she died that there should be rainbows of color and glitter at her funeral, not black. And there should be Pop-Tarts, of course. As I stood up on stage in my technicolor dress, staring back into the tear-soaked faces of her classmates, teachers, neighbors, cousins, grandparents, soccer teammates, youth group friends, aunts, uncles, her younger brother, her dad, her mom — the village that surrounded this little girl during her short life — I had just one thought: I couldn’t save her.
Throughout the course of her cancer treatment, when I sat in that tiny clinic room once a week with Rachel and her mother, I deceived myself into thinking we were the only ones there. I realized I do the same thing any time I give a new cancer diagnosis, review critical test results, or discuss difficult treatment decisions. I don’t think about the hundred other people outside that room holding their breath, waiting for updates, praying for a miracle. That there aren’t countless friends and family members desperately searching for something I may be missing that will help make that child healthy again. But of course, they’re all there in the room, too. And here in Rachel’s hometown church, I get a glimpse into her nonhospital world. I see for the first time the invisible army who has been lifting up this courageous family all along. I walk among all the people who, unlike me, knew Rachel before she knew cancer, and that somehow amplifies the grief.
I have attended a handful of funerals of patients, and each time it breaks my heart into a million pieces. Layered onto the expected sadness and grief, I have discovered more complicated feelings like guilt, insecurity, and even shame. These people trusted me with their precious child, I find myself thinking, hoping that all my years of training and all our modern medicine could make their family whole again. But we couldn’t. I couldn’t.
I know cognitively that it’s not my fault, it is the cancer’s fault. I understand that we do not currently have the tools to cure every child. That the natural history of all cancer is death, and we as oncologists are doing our best to disrupt that course, as one of my mentors often said. And yet, as Rachel’s grandmother wraps me in a tight hug and thanks me for taking care of her sweet girl, the knife in my stomach twists.
I imagine that some of these complex and challenging emotions play a role in the inconsistency in pediatric oncologists’ behaviors following the death of their patients. Although contact with the family following a child’s death is a component of the psychosocial standard of care, the type of contact (phone call, condolence card, funeral attendance) and source of contact (oncologist, palliative care clinician, nurse, social worker) are highly variable. Clinicians do know that continued connection with the medical team, or “nonabandonment,” can be protective for the parental grieving process and can sometimes help facilitate closure and healing for the clinician. Also known is that many oncologists view the death of a child as a “failure,” sometimes as their failure. As the oncologist responsible for making the medical decisions, attending a patient’s funeral can feel like staring into the belly of one’s failure, a difficult experience for anyone to undertake voluntarily.
And yet, many pediatric oncologists willingly immerse themselves in that pain. When I attend a patient’s funeral, most of the people there have no idea who I am. I prefer it that way. I am there to let the family know that I am still here, that their child’s life matters to me, and that they matter to me. But I would be lying if I said it didn’t take a lasting toll on me when I see the diminutive casket covered in glitter or think about their favorite toys lying motionless in their playroom, or Rachel’s classmates sitting next to her empty chair.
Those of us drawn to the field of pediatric oncology tend to feel some calling to stand side by side with patients and families during the hard moments as well as the happy ones. There is no match for the emotional roller coaster of a parent or family member whose child is seriously ill. And as oncologists, we often open our hearts up to that experience as well. We hope, too. We celebrate, too. We love them, too. And when a child dies, we grieve, too.
As a younger physician, I cannot yet seem to curb the feelings of guilt that bubble up when one of my patients dies. In the ever-changing landscape of pediatric oncology, will I always wonder if there was a miracle cure hidden away somewhere that I didn’t find? Was there a stone unturned or avenue unexplored? This may ease with time and experience, or perhaps it won’t. For now, I still find myself sitting in the church pew, anonymously taking responsibility for each and every tear, shouldering the weight of the overwhelming pain surrounding me.
