Informed Consent

“I was just swinging by to see if Ms. Campos was here.”

“That’s my mom, you could probably tell,” you reply with a wry smile. The resemblance is so obvious I wonder what your dad could have even looked like. You look the image of your mother, but brighter, with the bold pink letters on your black t-shirt announcing the EDM festival you went to last year, and highlighter yellow adidas folded up under you. If we hadn’t met here, now, I would imagine your life was a series of dance festivals interrupted only by the boredom of driving from one to the next.

“I figured, but you never assume, I’ve called daughters sisters, and sisters moms, and so on, but it’s nice to meet you,” I reciprocate the smile, pleasantries all around.

“So what did you want to talk to my mom about?”

“Well we are planning to pull her port out, she has this infection associated with it, it’s a short procedure we can do it here with some numbing medication.” I shrug easily. “Just wanted to talk to her about it and get the consent form signed.”

There’s an abnormally long pause.

Usually, you would nod, look thoughtful, maybe ask a few questions but usually not even that, usually you would just say something agreeable.

A second turns into a minute, but feels more like a decade before you speak.

“I can come back later when she gets back,” I say, trying to cover the unease.

“No. No that’s okay, she is coming back in just a second she went down to get some fresh air in that garden ya’ll have, she loves that place… But, can you tell me something?” Your face is very pensive, you’re sitting in the chair next to her bed, I can’t say for sure but you can’t be morre than 25, like your mom you’ve got a baby face, and your voice squeaks and twangs like an old slide guitar, the sound of sweet tea and tomato sandwiches. You’re from that deep-deep-south and your mom trucked up here because my boss was the only surgeon maybe anywhere willing to do her operation.

“What is the worst thing that could happen? When you take this port out?”

“Well,” I begin more awkward than I mean to be, “It’s really, honestly, a minor procedure, we have to cut the skin and sometimes the port is kind of scarred in so that takes a few minues to peel off, and then it’s sort of like pulling any line that your mom has had. In your mom’s case, when there’s infection, it comes out pretty easily. It’s just a matter of holding pressure and pulling. I’ve never had a complication from pulling one out, It’s possible for there to be something called an air embolus I suppose, or bleeding from where we are pulling the line,” I shrug “But i’ve never seen that, the more common-”

“I have.” you say quietly. I didn’t think you could squeeze any tighter into that chair but you have.

“Really? You’ve seen an air embolus?” I ask without a little bit of incredulity.

You’re not looking at me.

“I have a sister. A younger sister. When she was 19 she had to have a line put in her neck kinda like my mom has. She was healthy, but they said she needed this line in the emergency room. They didn’t say there were many risks and they said they did it all the time. We agreed you know, we’re from a small town,” Your eyes are full, your voice is thick. You shrug, “We just sort of said ‘Yeah, sure’.”

“Yeah," I say like an idiot, with a foreign horror growing inside me

“Anyway, they put this line in, and there was some sort of problem with the line or something, anyway they put it in the wrong place maybe, and a big bubble of air got in, and my sister had to go to emergency open heart surgery,” Now you’re crying, your face, the image of your mom’s, is looking at me with no shortage of tears running down them, your face couldn’t hide a single detail of that anguish. “So you know, now I ask, and I tell people to ask: what is the worst possible thing that could happen? Because I should have known better.” You say it with no malice, just a hard realism that doesn’t fit anywhere in the young, opimistic, unburdened face I saw just a few minutets ago.

“Yeah, of course, I appreciate you asking and, I am so sorry about your sister,” I manage to say trying to cross the gulf.

“My mom takes care of her, she needs a hundred percent help now you know, she needs someone to dress her, she was normal before, and they told us after her surgery she would be a vegetable you know, but she can sit at the dinner table and sometimes she surprises us, but my mom takes care of everything for her, well she did until she got so sick and needed to come here.” You give me a strained smile, the eyes are drying, you’re body is relaxing “So that’s why I want to know what the worst thing is that could happen, because I’ll be the one to take care of them if anything happens.” Your voice has lost all its warmth, carrying now a void, flat realism that doesn’t fit with your southern drawl, or your neon shoes. How could someone so small carry so much grief, I wonder. How do you bear up under it? I am crushed by it just standing near you, feel the weight of it pressing into our conversation.

“No, I understand. I mean, what we are planning to do, taking this port out, It’s pretty sraightforward.” I talk about the risks, I talk about the benefits, I talk about the possibilities, I assure you this will go a long way to helping her get better, you nod now.

We talk for a southern minute, you brighten slowly, you talk about the EDM festival you went to. You’re a manager at a retail store. You’re proud of your mom.

————

I remember my intern year, consenting a patient for the first time, and reading the legalese on the consent form. Death it says. Permanent brain damage. Paralysis. A dozen other horrifying things. Then a couple of lines for me to write the most relevant complications and risks, which I dutifully do: infection, bleeding, damage to surrounding structures. But I never think I’ll kill someone by pulling their port out. Anything can happen. Anytime. To anyone. And for them, it’s a case series of 1. Our language about risks, hazard, odds is all a bunch of statistical bullshit to that one person.

————

I had taken care of Ms. Campos for weeks, and she had never mentioned all of this. The port has been out for a few days. She looks better. The midline wound is healing. The bacteremia has resolved. Her fevers have stopped.

We never talk about the weight of responsibility that hangs on her narrow shoulders. We take for granted your benign smile, your tacit understanding, your implicit trust in us. We are the Big Ivory Tower Academic Center, with a capital “A”. The one the regional masses flock to for our technical wizardry and scientific know-how. There’s portraits of of old white guys in the hallways, that oil painting of significant size that emphasizes “This Guy did a Thing.” There’s posters of people in white coats with test tubes in their hands and glass flasks in obscurous behind them, with the subtitle “Game Changer”. I mean, the whole place inspires confidence. But your trust shames me. I know how fallible we are. For all the marble edifice, the floor to ceiling windows, and endowed chairs, we are just probing into the unknown offering our best guesses with our best attempts. Would that we could be worthy of your faith in us. But we are just the sum of our shortcomings. Small minds excavating at the edges of what we think we know. We do our best. No guarantees. But our posture says, “We guarantee it.”

——————

I sit half awake in Grand Rounds, I listen to one of the most respected surgeons I know tell us how, just 20 years ago, we used ot kill patients by flooding them with fluid until their bodies ballooned up like Michelin Men, and their blood turned into Kool-Aid and poured out of them. “That was how we used to take care of patients in hemorrhagic shock, until we learned better, now we give blood early…” He talks about massive transfusion, and trauma. My mind wanders back to Ms. Campos. I wonder if in 20 years I’ll think of the surgery we did, the saga we subjected her to, the burden we foisted onto those narrow shoulders already so full. Will I be proud of what we accomplished? Will i swallow back the bitter taste of guilt? We do our best. No guarantees.