…Memories of presence…the intensity of interacting with another human being that animates being there for, and with, that person.Arthur Kleinman, The Lancet, Vol 389 June 24, 2017 Pg 2466.
“What do you have?” I ask the paramedic with the clipboard standing in front of me. The ED is rather busy. I am trying to arrange transfer of a man with an intra-abdominal abscess and one with neutropenic fevers. The prospect of more work does not excite.
Hank, an older paramedic who really enjoys the “medicine” part of his job, launches into his presentation.
“Rex Mayfair is a mid-forties man with a history of metastatic prostate cancer, Stage IV presents with urinary retention since this morning. This happens occasional for him and he comes in and we place a foley and have him follow up later. I already bladder scanned him, 570ml, and our scanner has been underestimating lately. Can I place the foley? He’s hurting.”
“Any fevers, weakness, blood in his urine?”
“A little bit of blood earlier, none now. Otherwise no changes from his baseline. He is not currently undergoing treatment for cancer, but is not on hospice. Can I place the foley?”
“Sure, go ahead. I’ll be in a bit.” I am relieved he has such a simple complaint. Something straightforward. Shouldn’t slow us down too much.
I return to organizing antibiotics and transfers for my other two patients.
Cancer Just Sucks
Eventually, after I tie up some loose strings, I make my way to Rex’s room. By the time I get into his room, Hank has already placed the foley, 1000ml out, and Rex is feeling better. My participation is really only procedural – a physician needs to physically see every ED patient.
I have a confession to make, I hate cancer. I hate how all consuming it is. As someone who initially trained in family medicine, cancer makes me feel as though I have already failed. The time for prevention was long ago. Now we sit at the mercy of the tumors.
Bad cancer makes me feel helpless. Doctor’s hate feeling helpless. Rex had bad cancer, and he was young.
Walking into the room, seeing Rex’s young, gaunt face makes me want wrap this up as quickly as possible. I only need to make sure there is no reason to suspect this is something other than swelling related to the cancer and I can rush him on his way. This should be quick…
To be Present or…not
“Hi, Rex, I am Dr. HighPlains, are you feeling any better after the foley?”
“Oh yeah,” Rex says in a defeated sigh. “It is better now.”
He just looks so damn tired and weak. I inhale deeply, but shallow enough so Rex didn’t notice. I sit down in a chair, recline slightly, and prepare to be here for a while.
After a few perfunctory ED questions, I asked Rex how things were going otherwise.
“It sucks, y’know, it just sucks.” He admitted.
“I can only imaging how much it sucks.” My patterned doctor-speech.
“I hurt all the time, cancer is in my bones. My hips and back, they ache all the time and then trigger muscle spasms.”
Without probing, he tells me how his urologist diagnosed him after 8 months of treatment for prostatitis. He describes how he was on hospice for a bit, but didn’t want to have a catheter permanently yet, so now he is not on hospice, but not pursuing curative treatment.
I simply nod in silence. His eyes are sunken and tired, but whenever he looks up, mine are there to greet his and hold his gaze as long as he desires it. He pauses frequently, but never seems done.
He continues, again without probing. He decided not have chemo because he has a form of muscular dystrophy. His oncologists told him the chemo would render him bed-bound from weakness.
“I would’ve had no quality of life…it just sucks, y’know.” He trails off into silence.
“Yes, it does.”
You Don’t Have to Ask a Dying Man
What do you say to make someone who is dying feel better?
It is a trick question, of course. Not because there is nothing to make them feel better, rather the thing involves no speaking. The answer, it turns out, is simple: you listen.
You listen. Even when it makes your own heart break, you listen. You listen through the descriptions of pain which makes you wilt. You don’t have to ask a dying man anything.
If you listen, he will tell you everything he wants you to know.
Rex isn’t done. He tells me about the facebook groups he’s found, which have been helpful to fight the isolation of living in the middle of nowhere with end-stage cancer.
He describes how much he used to enjoy driving the bus which took local elderly to events in the city and hearing their stories.
He misses that.
He tells me again about the pain. He tells me how his doctor prescribed him oxycodone for the pain, but he doesn’t like taking it. It makes his sleepy.
He has two little girls. When he took the oxycodone he just slept all day. His voice trails off, but I hear the implication.
He would rather be awake in pain with his daughters than sleep away whatever time he had left with them.
“It just sucks y’know, I’m only my forties, not an old man. Shouldn’t have to have a tube up there….it just sucks….” He bows his head, the brim of his baseball cap hiding those eyes, deep-set in his sallow, bony cheeks.
At that moment, it was a good thing I was listening, I couldn’t have said anything if I’d tried. I was speechless. My mind whorled in appreciation for the beauty of his simple statement.
“I have two little girls, I just slept all the time.”
This man, who has all the right in the world to numb himself from the pain of his situation had decided being present with his family was worth the pain.
Maybe when someone tells you the name of the thing which will probably kill you, time becomes palpably more dear. I don’t know.
What would I suffer through to give my daughter better memories of her father? What would I suffer through to have those memories and make more for as long as I could?
Few of us face a choice so stark, but in some way or another, we all face Rex’s choice. We can choose to be present in our lives and in pain, or choose to chase numbness.
I sat in a room with courage that day. I sat in a room with a man who chose to live his life rather than run from death.
Occasionally, if we let ourselves, we can awed by those we see through our practices But, we have to let ourselves sit in acceptance and receive the gift. I could have easily kept moving and had Rex on his way.
Instead, I sat down, and I am richer for it.
Featured Image: The Artist’s Father in His Sick Bed, Lovis Corinth, 1888.