Charlie was a fisherman. He and his dad would drive to the lake near their house, sit on the dock together and chat until the sun went down. One evening when they got home, Charlie stole a quick sip of his dad’s ice-cold beer. He didn’t like it very much, but I should probably explain: Charlie was just 3 years old. He was also a prankster. More than once, fishing trips were delayed or canceled because car keys had disappeared, only to magically reappear at the bottom of the dirty clothes hamper or behind the refrigerator.
I met Charlie and his parents on a rushed Friday afternoon. He had just arrived in the PICU with a refractory medulloblastoma complicated by leptomeningeal disease, and I was the pediatric palliative care consultant. At the beginning of his treatment, his parents received a prognosis on the order of months, and after Charlie blew past that milestone, they felt that he would beat the odds. That Friday afternoon, though, despite aggressive disease-directed treatment, Charlie started having more seizures and time was short.
The PICU called me early on Sunday morning. Charlie’s headaches were worse despite the pain medicine we started on Friday, and his seizures were more frequent. When I arrived, the intensivist and the neurologist were discussing Charlie amid the buzz at the nurse’s station. Charlie was in status epilepticus, and several boluses of anti-epileptic medications had not been able to break the cycle of seizures. We all sat down with Charlie’s parents to explain what was happening. They recognized that he was dying and requested two things: that we not let him die seizing and that we not intubate him because they didn’t want to prolong his death with mechanical ventilation. I assured them that we would do everything in our power to keep Charlie comfortable. Sobbing, his mom pleaded with me to do whatever was necessary so that her boy didn’t have to suffer a minute longer.
I sat with Charlie’s family and nurses, treating his symptoms with the same intensity that had gone into treating his cancer. Over the next 2 hours, the visible seizures came and went until they finally abated. For another hour after that Charlie breathed sporadically but comfortably, cuddled between his parents in the bed. The last flushes of rosy color slipped silently from his cheeks and lips. When it seemed that Charlie’s breathing had completely stopped, I bent to his chest to listen for a heartbeat. Leaning over the bed, nestling the stethoscope earbuds in place, a mere 22 inches of black rubber connected us. I stared across the room at the clock on the wall and counted each second. My ears strained as I listened for the familiar, rhythmic dance that little hearts make. Charlie’s mom leaned in next to me, tears dripping onto the pillow next to Charlie’s motionless head, quietly whispering her goodbye as the rest of the room remained silent. A prankster to the last, Charlie suddenly arched up, threw his head back and gasped, flinging my own stunned heart all the way to the ceiling, and taking me with it. After a minute or so, I felt Charlie’s dad’s hand on my shoulder, and as he chuckled through sniffled tears, said “He sure got you good, didn’t he, doc?” I pronounced Charlie’s death a few minutes later, when he was good and ready and not a minute earlier.
Time is a slippery thing, and nowhere does it seem as elusive as it does at the end of a child’s life. Huge teams of parents, nurses, physicians, and others pour hours and weeks and years of effort into treating children with serious illness, hoping and straining for that most precious of resources: time. And when disease—or nature, or fate, or whatever we name it—tells us that time is up, our entire worldview is upended. Hopes for more time become hopes for quality time, or even hopes for less time, if it means less suffering for the children we care for. How odd it must seem to children of Charlie’s age, watching us adults twist ourselves into knots trying to grip the past and grasp for the future, as if more existed than this present moment.
When I put that stethoscope to Charlie’s chest, I think he might have sensed that I was on the line with something to learn, and he waited until the perfect moment to set the hook. He may also have felt the heaviness of his own final hours and felt his family petering on the edge of despair. Sending his doctor’s heart through the ceiling, Charlie jolted us with his mighty personality and brought everyone back from that edge. After months of cancer-directed treatments, it took Charlie only a moment to remind us about something that is easy to forget, in the nonstop thrum of energy and activity in the PICU: there’s no hurry. Life and death are not boxes to be checked. The sun will set on its own time, not ours.
Charlie’s name and identifying details have been changed to protect patient confidentiality.