An excerpt from On All Sides of the Bed: One physician’s/CEO’s journey.
In the early summer of 2013, our hospital collided with a Black Swan.
Before Europeans discovered Australia, they were familiar only with white swans. The discovery of black swans overturned a long-held assumption. In business and risk theory, a “Black Swan” refers to a rare, unpredictable event with massive consequences, a concept popularized by Nassim Nicholas Taleb. For us, that Black Swan arrived in the form of a patient.
He presented with neurological symptoms requiring brain surgery. Unbeknownst to anyone at the time, he had contracted Creutzfeldt-Jakob disease (CJD), a rare and fatal neurodegenerative disorder caused by an abnormal protein known as a prion. Unlike viruses or bacteria, prions contain no DNA or RNA. They are purely protein-based (and extraordinarily difficult to destroy).
The sterilization challenge
Hospitals rely on autoclaves (machines that use high-pressure steam) to sterilize surgical instruments. This method is highly effective against bacteria and viruses, but it is not completely reliable against prions. If a patient with undiagnosed CJD undergoes brain or spinal surgery, there is a theoretical risk that prions could survive standard decontamination. Instruments reused in subsequent neurosurgical cases could, in rare circumstances, transmit the disease.
Days after the operation, CJD became a possible diagnosis. By then, eight additional patients had undergone neurosurgery using the same instrument set. Definitive diagnosis requires biopsy or autopsy, meaning confirmation could take weeks. With a working diagnosis but no certainty, we had to assume the worst.
I immediately halted all neurosurgical procedures and quarantined the instruments. Typically, such decisions involve multiple committees and consultations. But as a physician-internist serving as hospital CEO, I occupied both roles: administrator and clinician. I made it clear from the outset that patient safety and community trust would take precedence over financial, legal, or reputational concerns.
The decision to disclose
Based on the clinical progression and testing, we were approximately 98 percent certain the patient had CJD. Even without definitive confirmation, I decided we would inform the potentially exposed patients in person and disclose the situation to the community shortly thereafter.
This decision was controversial. Some argued that disclosure created unnecessary fear, especially given the extremely low risk of transmission. Others worried about lawsuits, reputational harm, financial losses, and job security (including my own). After all, only a handful of documented cases worldwide had ever linked CJD transmission to contaminated neurosurgical instruments.
But transparency mattered. Those patients deserved the information so they could make informed decisions about future surgeries, organ donation, and their own medical care. What if they underwent neurological procedures elsewhere, unknowingly placing others at risk? What if they moved away and were lost to follow-up? If I were the patient, I would want to know.
I believed that honest communication, ongoing education, and counseling could reduce anxiety rather than inflame it. If the diagnosis proved correct, patients could make informed end-of-life decisions or choose to participate in CJD-related research. Silence would serve no one.
Destruction and cost
Once the diagnosis was confirmed, we consulted experts and sought guidance from federal health agencies. The recommendations for decontamination were inconsistent and, frankly, unsatisfying. Ultimately, I ordered the destruction of the instrument set, at a cost exceeding $200,000.
I could not guarantee complete decontamination. The potential benefit of saving the instruments did not outweigh even a minuscule chance of exposing another patient. Our chief financial officer initially pushed back, but when I asked whether he would allow those instruments to be used in his own brain surgery, the discussion ended.
The outcome of transparency
After informing staff, the hospital board, local and state officials, neighboring hospitals, and public health authorities, we held a press conference. We explained what had happened and how we were responding. The story spread quickly, appearing in national newspapers, on cable news, and across social media.
We anticipated sensationalism, but by communicating early and clearly, we controlled the narrative. Most coverage was accurate. When one outlet incorrectly labeled the case “mad cow disease,” our team promptly corrected the error.
As the media attention faded, the response surprised us. The community expressed trust rather than fear. Editorials praised the hospital for prioritizing transparency and patient welfare. Multiple regulatory agencies visited our small institution, organizations known more for citations than compliments. Yet we received no deficiencies and considerable praise.
I knew we had done something right when a large Boston marketing firm called, not to offer crisis management, but to congratulate us. The caller told me his firm could not have handled the situation better.
In health care leadership, crises reveal values more clearly than mission statements ever can. In that moment, we chose transparency over protection, ethics over expediency, and trust over fear. It was the right decision, then and now.
Joseph Pepe is a physician executive.
