We Don’t Always Know What’s ‘Best’ for Our Patients

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This story is from the Anamnesis episode called A Moral Code: Ethical Dilemmas in Medicine at 21:09 in the podcast. It’s from Anthony Chin-Quee, MD, a board-certified otolaryngologist. He is also an award-winning storyteller with “The Moth,” and has been on the writing staff of Fox’s “The Resident” and a medical adviser for ABC’s “Grey’s Anatomy.” This story comes from Chin-Quee’s memoir I Can’t Save You, which focuses on his coming of age during medical residency and dealing with a lot of mental health issues that he’s dealt with most of his life.

I sat in a chair next to Freddy’s hospital bed. The afternoon sun glinted off his long, silver hair giving a warm glow to the gown hanging from his slender frame. He huddled over a notepad, lips moving as he sounded out each letter. Freddy was 60 years old and had been born with a developmental delay. He’d been told that he reads and writes at a sixth-grade level. This might’ve been a bit generous.

Freddy also had a large cancer in his voice box. He required a total laryngectomy, a complex operation in which we would remove his entire voice box, pull up his trachea, and sew it into his skin, leaving him with a gaping hole in the front of his neck for the rest of his life.

Making a Life-Changing Decision

He would never breathe air through his nose or mouth again. Without air passing through the nose, his sense of smell would decrease drastically. Without a sense of smell, food would never taste the same. Freddy loved French fries — not for long. They’d likely taste like crispy cardboard after we were done with him. Speech would require mastery of a small device that would make him sound like a robot — that or he’d have to learn how to belch his speech through his esophagus.

Either option required a lot of teaching and a lot of practice. All to create a replacement voice that most people wouldn’t be able to understand through their confusion/horror/asshole snickering.

Freddy loved to sing along to the radio. He’d never hear his own voice again. Oh, and he could never go swimming again. I had no idea if Freddy even liked to swim, but if he tried, he would flood his lungs within seconds and drown.

I worried for Freddy. We needed his permission to perform the surgery, and with no family to discuss it with, the decision was his alone. He was legally competent to make all of his own decisions, but the life-changing ramifications of what was to come were challenging for me to grasp — and I was the one with the medical degree.

So, I sat by his side that afternoon, spending minutes I didn’t have to spare, reviewing with him everything that would and could happen. And as I spoke, I searched his hopeful eyes for any sign that he bore the true emotional weight of what was to come.

“Freddy, do you understand what’s happening to you tomorrow?” I said.

He could no longer speak due to the size of the tumor. His whispers were useless. He would run out of air after saying just two or three words. So, I handed him a pen. He labored over five words for 2 whole minutes, lips silently wagging, each stroke of ink carefully placed.

He handed the notepad back to me.

You have to take my voice. Y-O-U-H-A-V-T-A-T-A-K-M-Y-V-O-I-S.

I deflated with a sigh.

“Yeah, buddy, we have to take it.”

He signed the consent.

In the morning, just hours after he signed the paperwork, we ripped his voice box out of his neck. Just another routinely devastating surgery.

After work that day, I sat alone at a bar, making condensation rings with the bottom of my beer glass, lost in increasingly hazy thoughts.

Did We Truly Do No Harm?

Of course, we had removed Freddy’s cancer. Cancer is bad. That’s medicine 101. So, by that logic, cutting out the cancer was good. Right? It had to be. We’d done a good thing. So why couldn’t I shake the feeling that we had betrayed him? I took a long sip from my glass and then another.

Freddy was a simple man. A happy man, but one with a simple understanding of the world’s complexities.

I knew in my heart that he didn’t fully grasp the repercussions of the surgery. There was nothing simple about it. But surgery was what he needed to keep living, so we did it anyway, because, according to a bunch of smart people who didn’t know him personally, a life of any form or quality was better than no life at all.

We know what’s best. We promise. So here, sign this consent form and give us control over your body.

Was that not a betrayal of Freddy’s trust and confidence? Did we truly do no harm? And with that, I was awash with shame.

Who was I to continue assuming that he didn’t get it? Was I truly so elitist and judgmental that I knew in my heart that a grown man wasn’t smart enough to take care of himself and make his own decisions because he crudely spelled words out phonetically?

My beer glass spun in my fingers as I grappled with the arrogant paternalism inherent in what I was being taught to do every day. We know what’s best. We know our patients’ bodies better than they do because we’ve studied the anatomical connections. We know their minds better than they do because we understand the chemistry that drives the brain. We shape their decisions and craft their self-interest in the image of our own because we are so sure that if they knew all that we know, they’d say yes to our recommendations without a second thought.

But what if my understanding of self-interest was a distorted, warped mess?

My method of self-preservation was spending a Tuesday night getting drunk alone at a bar of a suburban Detroit Chili’s.

If the bartender were to offer me a bag of weed right there at the counter, I’d smoke it down and convince myself that getting behind the wheel of my car was fine because I wasn’t technically driving drunk.

If the keyed-up business bro on the stool to my right told me that he had cocaine to share, I’d sniff it in the bathroom without hesitation, party with him till dawn, and still make it to rounds at 6 a.m.

If someone, anyone offered to keep me company in my bed that night, I’d slip them my address.

Saying yes to anything even slightly adventurous felt urgent these days. Almost a necessity given my daily interactions with patients who’d been stripped of all agency. Or maybe that’s just my latest weak justification for all the dumb shit I’ve been doing with my free time.

And that’s who knew best for Freddy. Some asshole who preserved himself by pushing his luck until it inevitably ran out.

How could I possibly know what was best for someone else when I was nowhere close to knowing what might destroy me?

The thought nearly made my stomach turn. I got ahead of it by quickly downing the rest of my beer. I ordered another before my glass hit the counter.

It’s been a year of this. A year of making decision after life-changing decision for people who are so desperately vulnerable in their illnesses that they could barely speak for themselves.

Trying to Cope

And a year of my sorry ass drinking by myself in busy public spaces so I could maintain the flimsy belief that at least I wasn’t drinking alone. Because if I were, then I’d be a dude with a problem, instead of what I still hope I am: a kid trying to cope with having too many questions and never enough answers.

I unfolded a piece of paper from my pocket, smoothed it on the bar, and studied Freddy’s penmanship — all capital letters written by an unsure hand. I snapped a photo. It felt worth remembering.

Then, I raised my glass. Here’s to your voice, Freddy. I hope we did the right thing.

Check out the other stories from the A Moral Code: Ethical Dilemmas in Medicine episode, including “His Death Would Not Be a Good Death” and “Should I Offer My Patient the Option to End His Life?”

Want to share your story? Read the Anamnesis Storyteller Tip Sheet and send us an email at anamnesis@medpagetoday.com.

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