Abstract
WE RAN toward the elevator without even bothering to read the e-mail all the way to the end. We'd already seen enough; we needed to get to Chloe's room. Pounding the up-button, willing the cold metal doors to open, nobody could have seen this coming a year before, when
We'd LISTENED. Chloe's 15th—count'em—neurologist hadn't been able to find a cause of her neuroinflammation, either, and our palliative care team was consulted to manage uncertainty as much as symptoms. As Chloe napped, we asked her mother, Courtney, our standard opening question: “Tell us a little bit about your child.”
Maybe it was because the other teams focused entirely on symptoms or relied more heavily on physical examination, but that question brought a rare smile to Courtney's face.
After a brief pause she said, “Chloe is fire and magic and all things spectacular,” the words flowing as if spoken a thousand times. She went on to describe a 12-year-old who, before the incapacitating headaches started, had loved makeup (like her mom) and riding dirt bikes (like her dad, Charlie)—often together, appearances be damned—as well as dance troop and church youth group, and who knew the words to Hamilton by heart.
Over the following months we'd WATCHED the headaches get worse, despite every conceivable treatment. The only thing that helped was lumbar punctures, which went from weekly to daily to—I can't believe I'm saying this—twice a day.
We'd FOUGHT on Courtney and Charlie's side for symptomatic interventions that other doctors deemed too risky or not indicated, apparently not recognizing that Chloe's flame was being snuffed out by the endless cycle of sedation, lumbar puncture, and fleeting moments of comfort before the pain blanketed her again. Seeing the facial expressions of some staff that ranged from discomfort to near-pity, Courtney consistently reminded people of who Chloe had been before the headaches started. So often, in fact, that our team began to refer to Chloe not by name, but simply as “fire and magic and all things spectacular.”
As time passed and her condition worsened, we'd WONDERED whether Chloe, even in the absence of a diagnosis, might be dying. We'd INVITED her parents into that conversation, and HONORED the Not a good time's and Can you come back later?'s we heard in response. Until it finally became clear to her parents, too, that there might not be a “later,” and we WROTE the comfort care order, DISCONTINUED the fluids, ARRANGED the last family photo that would ever be taken. The classic palliative care sequence, except for the personalized message from Hamilton himself, Lin Manuel Miranda, that—thanks to some Make-A-Wish magic—unexpectedly popped up on Chloe's phone, sending her all his love.
So many action words to describe a team called to be present in the midst of suffering. I just couldn't remain still, though, no matter how hard I tried. There were too many unanswered questions, and pain so intense that our only treatment caused even more suffering. Every time I looked at the This is me! collage on her hospital room door—each photo displaying her incandescent smile, as she was surrounded by family or friends, doing the myriad of things she loved—I thought there just had to be more we could do.
Then the team Inbox pinged with Chloe's name in the subject line. Huddling close, we steeled ourselves for news that she'd died, unsure if we were brave enough to admit the thread of relief that ran through the tapestry of our sorrow. It had been so long since Chloe had been, well, Chloe.
But instead of a heartfelt note that began with “We regret to inform you,” the e-mail was actually the results of a long-since-forgotten brain biopsy performed months before and thousands of miles away. And unlike every scan and test that came before, it actually yielded a diagnosis. A treatable diagnosis.
Which is why we RAN toward the elevator to—for perhaps the first time in palliative care history—REVERSE the comfort care order and RESTART the fluids and nutrition. Yet more verbs, only this time they were actually going to save a patient's life, which is what every palliative care team dreams of but never gets to do. Leave it to Chloe to pull off the unprecedented.
We didn't just run, though; we HOPED—that she would get to wear makeup and ride dirt bikes and see Hamilton next month when it came to town—which takes courage, especially the longer you do this job. A heart can only be broken so many times.
With targeted treatment Chloe not only made it through the night, she started to get better and a few days later actually went home. After watching so many kids suffer unjustly and die far too young, it was if the universe was trying to atone for past transgressions. Finally, a kid would get what they really deserved: a life ahead of them.
Hope might as well be bought with a credit card, though, because you pay for it later, and at a steeper price. The supposedly treatable condition turned out not to be, and Chloe was so alternately somnolent and delirious that she didn't just not see Hamilton, she didn't even realize she'd missed it. Initially that seemed a minor blessing, until someone slipped up and said how sorry they were that she'd missed the show, breaking her heart anew. When empathy becomes cruel, you know something is terribly wrong. If there was any doubt, just watch parents go through their child's end-of-life care for a second time, as Courtney and Charlie did five months later.
Chloe's memorial was so packed that I wasn't sure I'd even get the chance to offer my condolences to her parents. So I focused on supporting the large number of residents and fellows and child life specialists there, who all loved Chloe and probably hadn't been to as many memorials as I have. The loss of such a wonderful kid was already too much to grieve about, but the lingering questions—Couldn't we have done more, or acted sooner?—sprinkled shame upon our sorrow.
When the pastor announced the service would begin soon, everyone started looking for seats and I saw a chance to talk to Courtney. Long ago I'd come to the conclusion that condolences are more about avoiding things not to ask (like How are you?) or say (like pretty much anything that starts with You must be…). So I just said how much I loved the card everyone was given upon arrival, bearing Chloe's radiant smile—which I'd never actually seen in real life—above these italicized words: Chloe was fire and magic and all things spectacular.
“You know,” Courtney said, although I definitely didn't, “the first time I ever said those words was to you.”
I didn't know whether to be grateful that we'd given her the space to share what was most special about her daughter—in a refrain that in the following months would become both mantra and plea—or to wonder what it said about the work that we do, if that's all we managed to accomplish.
Before I could reply, the pastor, wanting folks to get to know each other, asked family members to raise their hands. I walked back to the rest of the medical folks who were lined up against the most distant wall, as the pastor called out for members of Chloe's dance troop. As he moved on to the church youth group, I glanced down at the remembrance card and couldn't get over the past tense: Chloe was…
“And now,” the pastor's mike boomed out, “how about members of her medical team?”
The people, in other words, who were supposed to keep her alive, but didn't.
It wasn't like we could hide, clustered together farthest from the stage, bearing no resemblance to a dance troop or youth group. As the senior clinician there, I raised my hand in an attempt to shield my younger colleagues, because they definitely weren't responsible for what we'd failed to do. Then they raised their hands, too, and everyone else in the room turned to look in our direction.
It was as if someone had shined a light on all our shortcomings. I willed the pastor to quickly move on to the next group, but before he had the chance, something happened that I'd never seen before. Never even heard of.
The room erupted in spontaneous applause.
More shocked than surprised, we all promptly lowered our hands, trying to buy time to process what had just happened. But the people around us didn't stop; they just kept clapping. As if they somehow knew how hard we'd tried. As if all those very unpalliative verbs—and a single open-ended question that offered a vision of the real Chloe—held some sacred meaning. Like they were inviting us not only into their sorrow but also their memory, of the Chloe they knew who we'd only seen glimpses of.
For a few moments, we weren't the team who failed; we were fellow mourners surrounded by people who understood.
And I, suffused with grief and grace, for the first time in what felt like a great while, exhaled all the way, so that no breath was left inside.