Sunday, October 4, 2020

A doctor gave me an inept diagnosis for a neurological problem. I should know: I’m a neurologist.

 I love riding bicycles — I’ve been doing it for almost all of my 78 years. So, while visiting my daughter in California in April 2018, I couldn’t refuse a friend’s suggestion of a 15-mile bike ride through fields of flowers and cherry blossoms (a far cry from the barren spring of my home state of Maine). He cheated a bit, riding an e-bike, but I kept up on a borrowed pedal bike with handlebars two inches lower than my own. This required continued neck extension during the ride. 

I felt fine afterward, but within hours I developed neck pain with numbness and tingling radiating down my arms. I went to the emergency department (ED) of an elite medical center two days later, telling the staff that I was a neurologist with suspected cervical (neck) spine disease and possible spinal cord and root compression, a condition in my own specialty. I asked to have a cervical MRI scan performed, plus blood studies to detect a possible spine infection, as I’ve had one before. 

The spinal consultant tested my reflexes with the side of his hand. When I asked about his reflex hammer he replied that he didn’t have one or need one — even though this is tantamount to evaluating the heart or lungs without a stethoscope. 

He initially neglected to examine for the Babinski sign, a classic clinical test, which, if positive, would have strongly suggested spinal cord compression. When I remarked on this failure, he performed the procedure incorrectly. He checked my sensation with his index finger and did not examine other sensations, gait, coordination or hand dexterity. 

The MRI showed clear-cut spinal cord compression due to arthritis, and a neck mass behind the spinal canal. It was an abscess — a pus collection — but the hospital’s radiologist read it as a blood clot. The blood studies revealed active infection: marked elevations in inflammatory markers, plus increased white blood cells of the “should be concerned” variety. These obvious and dangerous abnormalities were not pursued and I was not informed of them. I spent six hours in the ED, then was discharged and told to follow up with a spine surgeon within two weeks. 

Two days later, I traveled home to Maine and reviewed my medical records online. I recognized the severity and complexity of my problem and went to my hospital, was admitted and underwent urgent spine surgery and long-term intravenous antibiotics. Left untreated, these abnormalities might well have caused a catastrophe: I could have become quadriplegic, unable to move my arms and legs or even breathe on my own. My response to the ED visit cannot be expected of the average patient, who would have been in deep trouble.

While recovering, I sent multiple letters detailing the specifics of my deficient care to the hospital’s chief executive. The hospital’s representatives responded, refusing to admit culpability or apologize for these failures. The spine service supervisor even excused the consultant, stating he “conducted the examination to the best of his ability.” 

The lack of recognition of the serious infection went unmentioned in the representatives’ letters. 

In view of the multiple serious medical errors committed during my ED visit, I offered to present and discuss my case to emergency and spine service staff. As a career academic neurologist, I thought a physician analyzing his own medical condition in his own specialty, intending to educate, would be an illuminating and teachable moment for medical staff and students and a healing opportunity for me.

My offer was ignored. 

In 1999, the Institute of Medicine issued its landmark report, “To Err is Human: Building a Safer Health System,” which estimated that as many as 98,000 hospital deaths a year were caused by medical errors. The report made national headlines and generated much subsequent discussion on the causes and effects of medical errors, and the ethics of transparency and disclosure. In response, many hospitals changed their practices and procedures, but two decades later, as my experience suggests, even the best hospitals and doctors remain resistant to admitting error, in large part because they fear malpractice lawsuits. 

Recent research bolsters this view. Several years ago, researchers posed two hypothetical scenarios involving medical error — a delayed breast cancer diagnosis, and a delayed response to a patient’s symptoms because of uncoordinated care — to 300 primary care physicians. More than 70 percent of the doctors surveyed said they would provide “only a limited or no apology, limited or no explanation, and limited or no information about the cause.” Further, when hospital representatives, rather than physicians, respond to medical errors by denying, minimizing or covering them up, physicians often conclude that their hospitals have no interest in confronting these errors head-on. Sure sounds like my situation.

My experience also exemplifies the phenomenon known as “the normalization of deviance” discussed by Diane Vaughan in her 1996 book on the space shuttle Challenger disaster. Vaughan concludes that multiple problems preceding the shuttle launch were recognized, but then rationalized, and “normalized” when they didn’t cause a disaster — until they ultimately did. 

Since the spine consultant did not own a reflex hammer, nor think he needed this basic tool, nor know how to do a proper neurological examination, and he and the ED staff did not recognize that the elevated inflammatory markers were indisputable evidence of serious infection, I could not have been the first patient so poorly evaluated — and, without doubt, not the last. Further, the consultant’s supervisor excused his mistakes, thereby deeming his deviances acceptable. 

The responses to my letters came from hospital patient service representatives, thus this denial and normalization was institutional, in support of Vaughan’s premise “that individual behavior cannot be understood without taking into account the organizational and environmental context of that behavior.” Vaughan mentions that sometimes the normalization of deviance only becomes evident after whistleblower revelation.

I am that whistleblower, “the canary in the coal mine.” 

The hospital’s administrator tasked with patient communication and resolution, and a widely known advocate for these subjects, was unaware of my complaints until I found her by happenstance 18 months later (listening to the TED Radio Hour while in my car) and contacted her. She was initially supportive of my request to present my own case for discussion and analysis, but now, more than 10 months later, she has yet to follow through. 

She wrote to me: “Hospitals don’t seem to know what to do with the opportunity you present. I don’t think the challenge is unique to [this institution]. A forum for these kinds of discussions — constructive, insightful patient feedback does not exist.” 

Initially, she told me that since my SOL is up I might have a better chance of making my presentation. I asked: “What is a SOL?” She said: “statute of limitations.” I said: “I don’t want to sue, I want to teach.”  

Of course, if I had been quadriplegic on a respirator I would have sued. But since I saved my own skin, that was not necessary. The aphorism, “A physician who treats himself has a fool for a patient,” only applies if competent care is available. 

For me, four years of medical school and five years of postgraduate training had a uniquely personal advantage. I’m just sorry that a teachable moment for the benefit of future patients, and a healing activity for me, was missed. 

Steven Horowitz is a retired academic neurologist who continues to teach medical students as an adjunct clinical professor of neurology at the Tufts University School of Medicine. He is also on the teaching faculty of the Maine Medical Center.

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