Hospital error may put patients at risk of incurable disease

Eighteen neurosurgery patients in North Carolina may have been exposed to an incurable brain disorder because instruments were not properly sterilized after an operation on someone who already had the disease.

Novant Health Forsyth Medical Center in Winston-Salem apologized this week, but said the risk was “very low.” In a statement, the hospital said that “extra precautions should have been taken” because there were reasons to suspect that the original patient had Creutzfeldt-Jakob disease. Although the instruments were sterilized, they were not subjected to extra measures that hospitals follow after surgery on someone who has or is suspected of having CJD.

Between 200 and 300 people a year in the U.S. are affected by the disease, which can take several months or many years to develop. Testing for it is difficult, and once symptoms materialize, a patient usually dies within six months. Problems involve control over movements, vision and memory. About 20% of those stricken are genetically predisposed.

The North Carolina incident is not unprecedented. In 2011, 17 patients in Georgia who received CJD warnings from Emory University’s hospital reached a confidential monetary settlement with the university, the group’s attorney, Wayne Grant, confirmed to the Los Angeles Times on Tuesday.

“To have this worry hovering in people’s minds and to have them obsessed with the disease for years to come is a high price to pay, and an unacceptable one, to not use a little more sterilization,” Grant said. The settlement came after five years of legal battles and seven years after the surgeries.

Emory had notified 500 patients that they were at risk. Grant said at least one other person sued separately.

Researchers wrote last year that only four patients have been reported to have contracted the disease through medical instruments, and none since 1976. But over the last decade, several hospitals have warned patients who may be at risk. In some of the cases, including last year in New England, hospitals didn’t realize that an initial patient the equipment had been used on had CJD. The patient was diagnosed only after an autopsy or later tests.

After working with a CJD patient, health officials recommend that surgical instruments either be destroyed or washed with a mix of stronger chemicals and heat.

Novant Health said it would now use those stricter cleaning procedures after all neurosurgeries. It’s unclear how many hospitals still have two sets of cleaning guidelines.

The National Institutes of Health says the best non-experimental way to test for the disease is to remove a piece of brain tissue, a dangerous procedure that isn’t always successful.

“Because a correct diagnosis of CJD does not help the person, a brain biopsy is discouraged unless it is needed to rule out a treatable disorder,” the NIH says on its website.

The disease isn’t transferred through casual contact, but exposure to infected brain tissue or spinal cord fluid is considered dangerous. Potential carriers of the disease can’t donate blood or organs.

Doctors, medical ethicists and lawyers have debated whether hospitals should even notify patients who may have been put at risk, since the chances of infection are so low and the chances of survival nil.

A group of doctors writing specifically about CJD in the New England Journal of Medicine concluded in 2010 that, “although, on balance, we believe that disclosure is often warranted, there is also greater ethical justification for nondisclosure in this case than” with other diseases.

Putting himself in the shoes of a patient, Dartmouth University medical professor Timothy Lahey wrote in the Atlantic that the question was “whether there is something, anything, to be gained from knowing that somewhere deep in the brain a rampaging misshapen protein with an appetite for global domination is quietly, mercilessly, taking apart the very substance of who you are.”

He said he would “rather live without that kind of shadow hanging over me.”

Grant, the Atlanta medical malpractice attorney, said it would be improper to keep patients in the dark.

“It’s not the hospital’s prerogative to withhold information,” he said. “People are entitled to that information to live their lives differently if they want to.”

The North Carolina hospital said it had disclosed the information because officials “felt that our patients had a right to open, honest communication about their care. This information will be important for patients and their families in the event that medical advances occur in the future related to screening or treatment for the disease.”

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