On Palliative Care: Part 1
"There is less doing and more being,” my attending said. Each week in Palliative Care forces me out of what I think I understand, forces me to rethink what I thought I truly comprehended. It sinks in each time differently, deeper, at a level within my soul that leaves me with a feeling that is harder and harder to shake off. When I share that I am doing my clinical apprenticeship in Pediatric Palliative Care, I receive the same reaction: a shocked look, a sucked-in breath, or a hovering question: how is it?
I’ve been adding to this answer more and more as my time in it continues, and I met a patient yesterday that solidified how I feel about it now. While most hear palliative care and think of the word “dying,” I have learned very quickly in this speciality that death is not the worst thing that can happen to someone. I have been in a code before; I have quite literally watched air leave a person, leaving behind the home of the person that inhabited them. In Palliative Care, I have met a blogger who writes her story with her chronic illness to be a window for someone else. I have met a songwriter who asked my attending when she would be discharged so she could get back into the studio. I have met a little boy who is obsessed with Pikachu, a teenager who hasn’t left a book untouched and has the relationship with his parents that I am sure most parents wish they’d have with their teenage son. People ask me waiting to hear about the sorrow in that field, but I have not seen it. I have seen strength in ways I only saw in Palestine, when one must make the most of their circumstances that seem to others as though they are the worst. Most of the time, they are the worst.
They can teach you all you want about how to see a patient as more than just that, as more than a diagnosis, more than an injury, an illness, a disease, a symptom, a complex history. But that won’t truly happen until you actively practice doing it, until you force the constraints of your mind to see someone as the person, for all that they are, for the story they carry on their shoulders when they come in to meet you.
He tended to Mom, listened to her. It changed the meaning of “comforting someone.” Palliative is less doing and more being. He was present with her, and said less, did less. Stood, listened, tilted his head in a way to show her he was listening. She pulled her phone out and showed him a video of her daughter singing. She was beautiful, I thought. But then again, who wasn’t?
We walked into her room, and my eyes were drawn to the four walls around us. There was her story thrown all across the walls in the form of photos of her with her friends and family, cards with written notes inside of them, posters from the teams she was on. There was her story, and you could read it wall by wall. Finally, my eyes rested on the center of the room where she was lying very differently than in her photos or video.
Up until this week, I had seen children with complex histories of chronic illness and developmental issues. They and their parents had accepted their life of strife. They had the chance to turn their life into a journey about living instead of surviving, focused on how to live next instead of awaiting their inevitable separation. And I saw hope in this. I met parents who turned their pain into a determination to make this something greater than it was. I met parents who knew enough medical knowledge about their child’s condition that they were truly their child’s advocates. I met a parent who was losing his second child to the same condition that took his first, and he was designing a course on resilience for his high school students. “They think what they’re experiencing is the worst thing, so I want them to be stronger. I’ve gotta do something with all this, you know, he had said with a laugh.
She had been at school, doing what she did every day. She probably said “see you later,” to her parents. Maybe she had plans with friends after school, a test to study for, another college application to submit. But instead of doing those things, she was struck by a vehicle that landed her on our floor looking very different from the girl whose smiles was now all over the walls of her room. I noticed her nails were painted a dark shade of blue, and I remember thinking how such a little simple thing reminds you of a life that each patient, each person, lives outside of these four walls. And then something happens, and they land here. They are here, and it’s up to us to keep their story as alive as possible, no matter how many machines they are hooked up to, no matter how many terrible imaging and lab results they receive. There’s a story in each room.
Comments
Post a Comment