A large group of us sat in the oncology conference room, working on getting 15 year old B to respite for the weekend before starting an experimental targeted therapy next week. This is our last option, but it could provide him some relief, and some more time. Or it could cause a significant reaction landing him in the PICU. The mood is cautiously hopeful – we are rooting for him.
A nurse pokes her head in, asking me to come take a look at him. I enter his room as I had done every day for the month of my elective, knowing that his Mom would be nearby, a video game stream would be playing on the TV, and the curtains would be wide open, splaying sunlight into his room. We had been struggling to control his pain, and I had seen him suffer, but now he seems different. Eyes squeezed shut. Writhing in bed. Grating his teeth. Clutching sheets with white knuckles. With my hand on his, I eye the wall of blinking and beeping pumps administering shockingly high doses of analgesics while I ask him a few questions. He looks me directly in the eye, raises his voice as much as he can, and in a tone I will never (can never) forget, he says, “I’m worried about death – I think it’s close.”
A million things race through my mind at once. I remember from a palliative care lecture that this can be a reliable harbinger. I wonder if his Mom, moving around the room trying to make things comfortable, heard his words. I actively choke back tears. I think about the last-ditch treatment set to start next week. I recall that his Dad and brother are a day’s drive away. I try to think of something comforting to say, but what does one say?
“You’re going to be okay, buddy.” Did I believe that? “I’ll be right back.”
The afternoon is a frenetic blur of medical conversations and goals of care discussions. Within that blur are moments of stillness: listening to his progressively shallower breath sounds as I glance at the walls covered in Mom’s adult colouring mandalas; waiting in the Starbucks line wondering what state he’ll be in when I get back upstairs; three doctors and a social worker silently averting our gazes while, through tears, Mom and Dad say “I love you” over the phone after committing to palliation.
I tell his story to the night team as the fellow gently places a death package on the desk in grim anticipation. I see him one last time, telling him I’ll see him in the morning, which I hear as more hope than fact. My shift is done and I leave for the day. But a reality of medicine is that your emotions don’t clock out – we can’t hand over our worries, our compassion, our grief. I think about him as I close my eyes at night, and again when I wake up at 4 am with a bad feeling in the pit of my stomach. I hope that feeling doesn’t mean what I fear it means.
I walk into a quiet unit after a short walk to the hospital where the breeze brushed my cheeks but the summer leaves seemed too still. I see his door shut with I sign on it I can’t bring myself to read. “Did you hear about B?” someone asks me. I know, I thought, while replying, “No, please tell me.” He had died in the evening, my colleague told me, peacefully and with his Mom by his side. We sit in silence for a moment as I hang my head, keeping those pearls of sadness locked in behind clenched eyelids.
When I tell this story to my friends and family, at this point they often say something supportive – “that must be so hard”, or “I don’t know how you do this”. But I remind them of a lesson I learned early in residency – that the story doesn’t stop with the patient’s last breath. The next chapter always includes things one cannot anticipate before experiencing them: looking into the complete despair in families’ eyes; seeing the exhausted glances between parents when they receive condolences; the inevitable melancholic feeling of having to put the heartache aside because your other patients need you.
That next chapter of B’s story includes a hallway conversation with his Mom and Dad about B, his life, and his death. They speak of his kind spirit, his love of music, and his quiet strength throughout the course of his disease. They say they wish I could have seen him at his best, not at the end when he was fading. At the end Mom thanks me for the care I gave her son and the time I spent with him, and tells me she knows I will make a great oncologist one day. These two humbling sentences profoundly move me, teaching me more about grief and resilience than I thought so few words could. She had spent 15 years with her son, and only 15 hours without him, yet here she was taking the time to consider my feelings and thank me for being a part of their journey. Did she know (could she know) how much that meant to a young resident taking their first steps in their chosen subspecialty? I receive a final hug from Mom, with a last squeeze of my arm and a smile intimating everything else she couldn’t say. Then I watch them go, leaving the unit for the last time with a handful of bags containing the items they will forever associate with the last days with their son.
Our stories intertwined for only a brief moment: his of a brave, resilient teenager who was taken from his family too soon; hers of a positive, hopeful Mom who would do anything for her son; mine of an eager learner yearning to keep my humanity through the gauntlet of residency. I can’t say how the crossing of our paths impacted his final days, but I am so grateful for the lessons he and his family taught me, and will carry them with me through each new chapter of my own journey.