‘Widespread and dangerous’: Facing medical uncertainty, some doctors tell patients it’s all in their heads
https://www.cnn.com/2018/12/21/health/medical-uncertainty-diagnosis-afm/index.html VIDEO ON LINK
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.
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.
Erin Olivera, mother of a child with AFM and founder of a private Facebook page for parents of 400 children with the disease, says Bailey’s experience is hardly unique. She estimates that 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.”
Dr. Mark Graber, president emeritus of the Society to Improve Diagnosis in Medicine, added, “It’s a tendency that physicians have when they can’t find a physical cause.
“It’s bad. It’s very bad.”
Bailey’s story
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.
The doctor said the paralysis was an emotional reaction to her sister’s birth four months earlier. He diagnosed Bailey with a mental condition called conversion disorder.
Sheehan told the doctor off.
Bailey Sheehan was diagnosed with AFM after her mother disagreed with an initial diagnosis.
“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.
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.
Armed with the correct diagnosis, Bailey received treatment for AFM, including extensive physical therapy, and four years later is walking again.
“We were lucky that her pediatrician was such an advocate for us, but I don’t know if everyone’s that lucky,” Sheehan said.
Sheehan says she understands why doctors didn’t immediately think of AFM for her daughter, because the disease was not well-known four years ago. But there are several other causes of paralysis in children, and she wonders why her daughter didn’t get a full round of testing for those.
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 stories I can tell are maddening and saddening,” said Greenberg, associate professor of neurology at UT Southwestern Medical Center.
Four years later, Sheehan says, she still feels the scars from her daughter’s misdiagnosis.
“You feel violated and wrongly accused,” she said.
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.
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.
The consequences can be “catastrophic,” he said, because a misdiagnosis can lead to a patient receiving treatment for a disease they don’t have and missing out on treatment for the disease they do have.
“False certainty is much more dangerous than uncertainty,” he said.
The American Medical Association and the American College of Emergency Physicians declined requests for comment.
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Graber, who is also professor emeritus of medicine at the Stony Brook University in New York, said part of the problem is that medical students are taught that physical symptoms sometimes have a psychological basis. That’s true, he said, but doctors need to thoroughly test for physical problems before defaulting to a psychiatric diagnosis.
“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.”
Frances added that it’s OK for a doctor to simply say “I don’t know.”
“Doctors need to learn to embrace medical uncertainty,” he said.
Filed under: General Problems
, I disagree w/ thee above commentore..This is happening everywhere more and more because Doctors are afraid of a diagnoses that might require a pain medicine, or they have god complexes.Also it is happening more and more in the Cpp diagnoses because doctors are terrified of prescribing opiates at effective levels.I myself having been misdiagnosed for 15 years,,A great friend of mine,actually diagnosed w/chronic pancreatiis,recent bad flare up,her doctor puts ,”unknown cause,” on her records for her continual upper gastric pain,,He knew full well Her pancreas was calcifying more,thus why he sent her to a specialist for pancreatic CALCIFICATION,,,,,but he put on those recent records,”unknown cause,” to avoid giving her effective dosages of opiates to lessen her pain,,to cover his ass..Also WOMEN for 2ce as likely to get this diagnoses,,”its all in your head,” because it is still taught in medical schools women our inferior to men,,and over-react to physical pain,,,when the truth is,,,If seen men cry like babies over a cold,,let alone a debilitating medical illness that truly causes severe pain,,,,JMO,,MARYW
You said it well! I personally have experienced this at epic levels and am now in therapy for the ptsd I have because of it. I can’t wait till the lawyers start crawling out of the woodwork when the government finds their patsy for the trauma we’ve had to endure. Ive personally stopped going to doctors. I can’t take the anxiety.
Maggi;
You have my deepest sympathies on the medical ptsd thing. I made the massive mistake this morning of trying to explain this concept to my relatively new PM doc…BAAAAAAD idea. Now he “knows” that I’ve got excessive anxiety and unreasonable paranoia.
Of course, we CPPs are incapable of telling the truth about anything, right? Including the fact that we’ve been actively & severely abused by medical personnel, sometimes for decades if we’re unlucky enough to have our “mythical” pain problems that long.
I’ve come to understand at a visceral level the people that go absolutely berserk & go on rampages. Volcanic levels of rage are not healthy to have to live with. Just another way to get rid of we “unproductives” & “addicts” –heart attacks from that & the stress.
I dearly hope you’re right & some lawyer somewhere grows a spine & goes after the medical & lay sadists that are driving this insanity.
100% agree, Mary. I almost died because an ER dr. (female) decided I was a drug seeker instead of a patient who was bleeding internally from an ectopic pregnancy bursting within my tube, along with a ruptured ovarian cyst. (This was back in 1994. I was a 19 year old college student). She decided I was faking my abdominal pain, then sent me home. The rupture also (slightly) tore my diaphragm, which affected (severely after I was sent home) my ability to breath. By the time my family got me back in the ER the next morning, I was in stage IV hypovolemic shock, unable to even communicate, with over 40% of my body’s blood supply inside my abdomen. They were prepping me for emergency surgery while waiting for the on-call surgeon. About a year or so later, I began having symptoms of fibromyalgia. I truly believe the trauma I suffered that night she sent me home was what triggered my fibro.
I wonder if the hospital was a teaching public hospital. Unfortunately, doctors,that are still students. are more likely to jump to that conclusion. than experienced doctors.