The truth behind why doctors don’t tell the truth


There are two key scenarios when doctors fail to tell “the whole truth and nothing but the truth so help me God.”

Sometimes doctors give a diagnosis we’re not 100 percent sure of and other times we don’t diagnose something we’re almost 100 percent sure of. The truth is complicated and often more gray than black and white.

Scenario #1: “You have [insert diagnosis here].”

My dad recently awoke from sleep like you would aboard a ship on rough seas that smacks a giant wave. The room was spinning, he’d lost his balance and he was vomiting.

He was evaluated and treated in the emergency department in my little hometown. He got some labs (normal) and a head CT (negative). His symptoms improved with treatment in the ED, and he was discharged home with the diagnosis of “labyrinthitis” (inflammation of the inner ear that causes dizziness). My parents accepted this as his diagnosis and left reassured.

From thousands of miles away, I was not reassured.

Certainly my dad’s symptoms fit the diagnosis, but I knew it was more of a “best bet” than a “sure thing.” His doctor didn’t do a Dix-Hallpike maneuver (an exam test for benign paroxysmal positional vertigo (BPPV)), and he didn’t have access to MRI to rule out a cerebellar stroke.

Thankfully my dad’s outpatient MRI was negative, and his symptoms improved with time. Maybe that doctor was right, maybe he wasn’t. But right or not, I wish he would have communicated his honest lack of certainty a little more clearly.

Ultimately, however, I understand why he didn’t.

Insurance companies won’t pay for “probable labyrinthitis.”Insurance companies have a tremendous amount of power. To get paid, doctors have to commit to a diagnosis (even if it’s just a symptom). There is a list of diagnoses/symptoms (ICD codes) they will pay for and that’s that.

I once saw a gentleman who was sent to the emergency department from a nursing home for evaluation after a fall. His exam did not reveal any new injuries, so I diagnosed “fall.” I got that chart back because “fall” is not a billable diagnosis.

He didn’t have any contusions or abrasions, so I ended up diagnosing, “medical screening exam.” It may not have been the most descriptive diagnosis for his visit, but it was one the insurance company would pay for.

Patients/families don’t like uncertainty. My dad’s doctor could have diagnosed him with “vertigo,” but my dad knew he had that when he walked in the doors of the Emergency Department and the whole room spun around him like flakes in a snow globe.

I can’t tell you the number of times I’ve seen patients after a complete workup somewhere else. They say, “That doctor didn’t tell me anything!”

What these patients have often really been told is that their tests did not reveal an explanation for their symptoms. They were discharged with a symptom diagnosis like “abdominal pain,” but this is not the answer they were looking for.

Patients want a diagnosis like “peptic ulcer disease” so they can explain their pain and work absences — even though that diagnosis can’t be given with 100 percent certainty without an esophagogastroduodenoscopy (EGD).

I have unfortunately seen this pressure for definitive diagnosis backfire (I’m sure we all have).

I once saw a toddler who was taken to three different providers and received three different diagnoses. A small amount of blood on her underwear was diagnosed as an anal fissure. More bleeding resulted in a diagnosis of vaginal bleeding/suspicion for abuse. Labs finally demonstrated hematuria with severe anemia and imaging showed an enormous Wilm’s tumor (a kidney tumor found in children).

I wish those first two providers had felt like they could have been more transparent about their uncertainty because I’m certain they were more uncertain than their diagnoses suggested.

Scenario #2: “I don’t know what you have.”

A doctor can be pretty sure about some things they won’t say. There are three common reasons for this.

It’s a clinical diagnosis that could possibly be disproved later (and we don’t want to be wrong). Most doctors shy away from diagnoses with psychiatric components. It’s too hard to prove, and too easy for it to bite you in the hindquarters.

If a patient’s presenting complaint is, “chest pain,” I’m unlikely to definitively diagnose an “anxiety reaction” even if that’s what I think it is. The risk of being wrong is too great. I don’t want someone to ever say about me, “That doctor told me it was just anxiety, but I ended up with a quadruple bypass a few weeks later!”

It’s going to upset you, and it’s not worth it because it may make you want to complain about us or sue us. (And we don’t want you to tell us we’re wrong — which you will most likely do even if we’re not actually wrong). The last thing any of us wants to deal with is an angry patient over an unprovable statement. It’s hard to prove someone is a “drug seeker,” so we rarely put that kind of clear language in a chart. Instead, we note things like, “Patient asked for Dilaudid by name and specifically requested a rapid push.”

In the same vein, I will probably never put “conversion disorder” as a diagnosis — even if I’m 99 percent sure someone has it. Conversion disorder is the unintentional feigning of symptoms (usually neurologic deficits) for which there is truly no medical explanation. No one wants this diagnosis. So the 1 percent chance I might be wrong is enough to keep me from being completely transparent about my thoughts.

We don’t want to put you through bad news if we’re not 100% sure (and we don’t want to be wrong). When I was in residency, I took care of a young mother who left the hospital across town and came to our emergency department with her radiology report for a second opinion.

She’d had a full and thorough workup at the other hospital, but she said they wouldn’t tell her what was wrong with her. I scanned her report and said, “They didn’t tell you they think you have metastatic cancer?” She said, “They said I might have cancer, but they weren’t sure.”

I sat down and read her report to her out loud.  It said things like, “large spiculated mass consistent with malignant tumor” and “numerous masses throughout the liver, spine, and lungs consistent with metastatic disease.” It was one of the least “hedgy” radiology reports I’ve ever read. (Radiologists are infamous for nebulous reads because like all doctors they don’t want to be wrong!)

It’s true that the only way to diagnose cancer with 100 percent certainty is to get a biopsy and have a pathologist confirm it. So the doctors who told this patient they weren’t “sure” were telling the truth, but somehow it didn’t quite seem like the most transparent version of the truth.

I was lucky enough to see her back months later, and she did indeed have cancer. She beamed when she told me she had already made it longer than doctors had predicted. Sometimes patients want doctors to be wrong.

We seem to hear a lot about the times doctors get it wrong.

“That doctor tried to tell me I was just crazy and I actually had heavy metal poisoning and was cured by chelation.”

“Doctors said he’d never walk again and now he’s winning medals in road races.”

“All the doctors told us our baby wouldn’t live, but he did!”

But sometimes the stories of doctors getting it wrong aren’t the “whole truth and nothing but the truth” either. Sometimes people leave out details like the fact the person who doctors said wouldn’t live is on a home ventilator, fed through a g-tube and has multiple seizures a day.

Doctors walk a web of thin fibers between a patient’s expectations, our honest perceptions, and insurance companies’ requirements. But we do it. We do it because there are times I get to walk into a patient’s room and say, “Good news! We have a diagnosis! You have acute cholecystitis, and you get to get your gallbladder out and in a few days you’ll be feeling so much better!”

Some things are black and white, but most of medicine is a little gray. William Osler, “the founder of modern medicine,” said, “Medicine is a science of uncertainty and an art of probability.”

Our efforts to transcend these truths (for patients who demand answers and insurance companies who want codable clarity), has worked to undermine trust in our profession. This in turn creates more need for the kind of certainty/assurance that isn’t honestly attainable. The cycle won’t stop until we embrace the truth that the truth is a little gray.

Kristin Prentiss Ott is an emergency physician who blogs at her self-titled site, Kristin Prentiss Ott.

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