Facing medical uncertainty, doctors tell patients it’s all in their heads – By Elizabeth Cohen, CNN – December 21, 2018
When 7-year-old Bailey Sheehan arrived at a hospital in Oregon partially paralyzed, a doctor said the girl was faking her symptoms to get her parents’ attention because she was jealous of her new baby sister.
Those of us with invisible painful syndromes regularly encounter this attitude from medical professionals. When a doctor cannot find some tangible “proof” of our pain, they jump to the conclusion that our problems are mental.
But that doctor was proved wrong when an MRI showed that the girl had acute flaccid myelitis or AFM, a polio-like disease that’s struck hundreds of children since 2014.
What I find frightening and even immoral is that doctors are never reprimanded, rebuked, or in any way penalized for this atrocious conduct, not by their peers, their employers, or medical boards.
Without any official recognition of these blatant errors and damaging misdiagnoses, there’s nothing to stop this flippant approach to patients with invisible illnesses or pain.
based on postings by parents, as many as 1 in 10 children were told that the paralysis was all in their heads when they first sought medical care.
Experts who study the art and science of diagnosis say the problem goes beyond this one rare disease.
They say that in general, when presented with a puzzling disease, physicians too often leap to a diagnosis of a psychiatric problem.
“Mental disorders become the default position to deal with medical uncertainty,” said Dr. Allen Frances, former chair of psychiatry at the Duke University School of Medicine. “It’s widespread, and it’s dangerous.”
Bailey was a healthy little girl until October 28, 2014, when she suddenly couldn’t move her neck or her right shoulder or leg.
A rehabilitation expert at a children’s hospital said Bailey wasn’t really paralyzed, according to her mother, Mikell Sheehan.
He diagnosed Bailey with a mental condition called conversion disorder.
Sheehan told the doctor off.
Good for her! This is a brave response.
“I said, ‘You’ve been with my child for 15 minutes, and you think it’s psychological? Get out of my face,’ ” she remembered.
Sheehan said the doctor hinted that she was unstable.
“He said, you know, ‘moms with new babies don’t get enough sleep,’ ” she said.
So, when they don’t know what’s wrong with a patient they diagnose them as mentally ill and then, if the caregiver protests, they are diagnosed as mentally unstable as well.
Such a diagnosis of mental illness causing your symptoms is entered into your medical record and will follow you around the rest of your life. This carelessly incorrect notation will poison your relationships with all subsequent doctors and make it almost impossible to ever receive appropriate medical care for your symptoms.
Bailey’s regular pediatrician, who’d known the girl since birth, disagreed with the diagnosis and pushed for further testing. That’s when the MRI showed that she had AFM.
Dr. Benjamin Greenberg, a neurologist who’s seen cases of AFM across the country, said that even this year, when AFM has made headlines nationally, parents have told him that doctors have missed the disease and suggested that their children were faking their paralysis.
The dangers of false certainty
Though there’s no data indicating how frequently doctors misdiagnose physical conditions as psychiatric ones, experts in the field of diagnosis say they see it all too often.
When doctors insist that what they cannot see or understand is simply imagined, it absolves them of all responsibility to treat these patients, blithely passing them off to psychiatrists to deal with and hoping they will never have to see these patients again.
And of course, they will not ever know how wrong they were or see the “right answer” to their misdiagnoses because patients will not continue seeing a doctor that insults and dismisses them so handily.
It typically starts when a patient has a perplexing illness and doctors feel a need to come up with a diagnosis.
“Doctors are uncomfortable with not having answers,” Frances said.
So they are more comfortable with wrong answers than none.
This is something I noticed in high tech workers as well. Even a completely and obviously wrong answer was preferable to an honest “I don’t know”.
(I see this as a result of the increasing use of meaningless metrics to measure performance. Many metrics are meaningless because they are devised by managers and accountants removed from the day-to-day work of the people whose “performance” they are supposedly evaluating,)
When such a “wrong answer” sends patients on years of searching to find a cure for their non-existent mental illness, there are no repercussions for the original misdiagnosis.
How can this be called medical care?
The American Medical Association and the American College of Emergency Physicians declined requests for comment.
This is so typical of doctors’ organizations: they close ranks, dig deeper into their position, and refuse to consider they might be wrong.
“Physicians have an obligation to do a thorough workup before turning to a psychological explanation,” he said. “When a doctor can’t find a cause, that’s a great time to get a second opinion or consult with a specialist.”
“Doctors need to learn to embrace medical uncertainty,” he said.