Neurologist as Patient: A Missed Diagnosis, Poor Communication, and Incompetent Care Could Have Led to Quadriplegia

Jennifer Lubell

November 12, 2020

When Steven Horowitz, MD, began experiencing neck and arm pain, numbness, and tingling following a bike ride several years ago, he immediately sought care at an elite medical center in California. As he recalls, an incompetent clinical exam and no access to highly abnormal test results done in the ED almost cost him his health. Had he listened to the doctors at that facility, he believes he would have become quadriplegic.

Dr Steven Horowitz

His training as a neurologist likely saved his life: "I was able to recover because, after arriving home, I reviewed my blood work and MRI online and recognized multiple problems." He was able to get excellent care at his own local health care facility in Maine. The staff and leadership at the hospital in California wouldn't admit wrongdoing, and efforts to seek recourse have proved fruitless, he said.

A lingering question nags at him: What if he had been an ordinary patient without medical expertise? What do his experiences say about the health care system's management of medical omissions and errors?

Horowitz, 78 years old and retired, continues to teach medical students as an adjunct clinical professor of neurology at the Tufts University School of Medicine in Boston. He is also on the teaching faculty of the Maine Medical Center. He was professor and chief of neurology at a major university in the Midwest for many years.

In 2018, he visited his daughter on the West Coast, enjoying a day of biking. The neck pain began 5 or 6 hours after the ride and spread to his arms. "There was also numbness and tingling," he said.

"I Told Them I Was a Neurologist"

The next day the pain got worse. Horowitz went to the ED of a nearby medical center with his daughter and immediately disclosed that he was a neurologist. "I did this for several reasons," he explained. He wanted to alert staff that he had a cervical spine problem because "I wanted them to do a cervical MRI scan, and I wanted to read it because I'm capable of doing that." He also related a past history of infection and antibiotic use and asked for C-reactive protein and erythrocyte sedimentation rate tests in addition to regular blood work. "Those inflammatory markers, if abnormal, would indicate an infection," said Horowitz.

No Reflex Hammer or Babinski Test

During the reflex exam with a spine consultant, Horowitz noticed that the consultant wasn't using a reflex hammer, the clinical equivalent of evaluating the heart or lungs without a stethoscope. "I asked where the reflex hammer was, and he said he didn't need one or own one. He used the inside of his hand. Apparently, there was some mild weakness in some muscle groups, but he didn't address that," said Horowitz. The consultant also didn't test for the Babinski sign until reminded of it.

He took out a stethoscope and struck the middle of the soles of Horowitz's feet. "I thought to myself, this consultant is the consultant for the spine service? How is it possible that he has a stethoscope and not a reflex hammer and didn't know how to test for the Babinski sign?" The consultant also didn't examine for gait, coordination, or hand dexterity. "He took his finger and touched my feet and legs. That was his sensory exam. He didn't use a pin or a tuning fork" or other methods including touch, temperature, position sense, and vibration to assess sensory abnormalities that might signal spinal cord dysfunction.

An MRI at the hospital revealed a mass at the back of the neck. No contrast material was used during the MRI even though this step would have signaled the presence of infection. "Gadolinium should have been injected during the MRI because that would have strongly suggested that this mass in my neck was not a little blood clot and more likely an infection. They would have realized something more complicated than degenerative arthritis was going on. They told me that I had advanced spondylosis and that the mass was a hematoma. They told me not to worry about the blood results. Then they discharged me."

A Life-threatening Discovery

Horowitz didn't see the results of the blood work-up until returning to Maine a few days later, when he checked the online report. There was a highly elevated CRP level — 30 times above the normal limit — and elevated erythrocyte sedimentation rate and white blood cell counts. "This showed that there was an infective process going on. And it wasn't just a localized process, it was in my bloodstream," he said.

Alarmed by the elevated markers, he immediately went to his local hospital. "Not only did I have arthritis, but my spinal cord was compressed." Urgent surgery was performed, including a C2-7 fusion. The mass in the back of his neck turned out to be an abscess.

His training and experience as a physician/neurologist saved him from further damage, he said. "Because the compression of the spine was at the C2, C3, C4 level, not only would I have become quadriplegic, but my diaphragm would likely have been paralyzed and I would have needed a ventilator."

Following a month's care in the hospital and a rehabilitation center, he wrote to the CEO of the California hospital where he received his initial care.

"I wrote about the incompetent exam, the missed infection, a discharge without information. I wrote all that out to the CEO and sent the letter registered so that he would receive it." The CEO forwarded the letter to a patient risk manager, who interviewed staff and supervisors in the ED, radiology, and the spine program. They responded 3 months later. According to Horowitz, the spine supervisor said, "The consultant performed the exam to the best of his ability." No one admitted to any errors in care or the lack of recognition of the infection, although the neuroradiologist did apologize for not allowing Horowitz to read his own MRI in a timely manner.

"They had promised to wheel a portable computer into my alcove so I could view the MRI." Several hours later, after persistent complaints, he was given 1 minute to look over at least 300 images at a desktop computer in the crowded ED. They gave him the MRI images on a disk, but he wasn't able to read it on his iMac computer.

According to Horowitz, the ED should have called in an infectious disease consultant and a neurologist or neurosurgeon to do a more complete neurologic exam. "Instead of discharging me, they should have admitted me, telling me that I had spinal cord compression, an infection, and a mass in my neck — that they don't know what this is about, and I shouldn't go home."

Eventually, after long-term intravenous antibiotics and extensive physical therapy, Horowitz recovered. "I definitely had PTSD afterwards. How could a non-eventful bike ride result in an unrecognized threatening illness? I thought a healing opportunity for me and an educational opportunity for the medical staff and students at this medical center would be for me to present my case to them at a conference at their facility the next time I visited my daughter in California. I thought an experienced clinician discussing his own illness in his own specialty would be unique."

The hospital ignored his offer.

By happenstance, a year and a half later, Horowitz made contact with a hospital administrator after hearing her speak during a TED Radio Hour in his car. "We had several telephone conversations and email correspondences in October and November 2019 but none since," he said. In one email, she wrote that "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."

Horowitz hasn't considered a malpractice lawsuit. "The only result would be a monetary reward based on damages. Since permanent clinical damage did not occur, the suit would have been time consuming and the reward limited. I was able to recover because I was able to review the blood work and recognize my own problem and get excellent care at my own local health care facility. I was really hoping the doctors at the California hospital would learn from this episode."

Horowitz also wrote the Medical Board of California a detailed letter, citing relevant medical literature, guidelines on spinal care, and his test results. Nearly 2 years later, he finally got a response. The board said there was no "clear and convincing evidence that negligence took place."

In Horowitz's opinion, "the fact that CRP was 30 times past normal is 'clear and convincing evidence.' That the consultant didn't have a reflex hammer is also 'clear and convincing evidence.' That the clinical neurologic exam was incompetent, by any measure, is 'clear and convincing evidence.' Even the Medical Board, tasked with patient protection, didn't recognize negligent medical care. They might have if I had become quadriplegic."

A New Normal?

Horowitz, who wrote of his experience in The Washington Post, said it reflects a persistent, systemic problem in health care: the inability to address medical errors and correct them. In the article, he addressed a phenomenon called the "the normalization of deviance." Diane Vaughn wrote about this phenomenon in a 1997 book about the Space Shuttle disaster. Multiple flaws were noted in previous shuttle launches but then rationalized and "normalized" when they didn't cause a disaster – until they ultimately did.

"That's relevant to my situation," Horowitz said. "The spine supervisor at this hospital excused the consultant by saying, 'he did the exam to the best of his ability.' Further, the response to my complaints came from hospital representatives rather than physicians, meaning that the 'normalization' was institutional, and it was willing to accept his poor performance without sanctions."

He imagines that he could not be the only case handled poorly by this hospital or that particular consultant. "He could have done the same thing to another patient who didn't have my medical knowledge," added Horowitz.

In her book, Ms. Vaughan noted that whistleblower activity is sometimes the only device that reveals normalization of deviance.

Horowitz sees himself as a whistleblower for these types of mistakes. "The question is, how do we deal with medical errors even in sophisticated patients who see these errors, and how do you manage this in the average patient? I don't want to see this type of medical care rendered for any patient, hence my attempt to make this situation public."

A Teachable Moment Lost?

Commenting on this case, Alan Rapoport, MD, said, "[it]illustrates inadequate physician evaluation in the ED, poor communication from the examining doctor about abnormal lab and MRI findings, unwillingness to call in consultants to properly evaluate the situation, and no recognition of the need to admit the patient."

Rapoport is the editor in chief of Neurology Reviews and a clinical professor of neurology at UCLA in Los Angeles. He is a past president of the International Headache Society.

He noted that the patient is in his late 70s and needed to fly across the country to arrive at home. "Months later, when this situation was explained to the hospital via the mail, they totally failed to recognize their inadequacies and apologize for their mistakes. They were probably concerned about being sued, but I believe that their actions increased their chances of a lawsuit," Rapoport said.

"When a teaching remedy was offered by the patient to the hospital so the doctors involved could learn from the experience, the hospital was not interested. The only party that learned from this unfortunate episode was the patient, not the doctors, or the ER, or the hospital administration," Rapoport said.

He continued, "It is scary to think that an excellent hospital would act in this manner and refuse to learn from their mistakes. The California medical board was notified and did not investigate. It is not too late for the hospital to apologize, communicate their shortcomings, and fix the problem at multiple levels in the hospital."

Rapoport consulted Morris Levin, MD, a professor of neurology and director of the Headache Program at UCSF, to ask what he thought, theoretically, about how a hospital should respond when they make a mistake and how much they should divulge. Levin is involved in Medical Ethics and often lectures about it at conferences.

Levin said, "When medical errors are made, to me, it is ethically sound to identify them and 'fess up.' There has always been reluctance to do so because of fears of lawsuits, but it turns out that when institutions do disclose errors, their liability costs actually go down." Levin cited the University of Michigan, which tried a full disclosure policy as an experiment. "It led to reduced costs, not to mention a boost in patient satisfaction," Levin noted.

He continued, "I think patients want and deserve to know the truth. I also believe they understand that medical errors can and will happen. It is my observation that patients have several key concerns: 1) how the error(s) happened, 2) how the error affected their health and what can be done to restore them to optimal health, and 3) what the institution is going to do to prevent this kind of error from happening to others."

Rapoport concurs with Levin. "I am glad Dr Horowitz has fully recovered and at least he has learned from the experience. I do not think the hospital and doctors did," Rapoport said.

This article originally appeared on MDedge.com, part of the Medscape Professional Network.

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