Parents weren't told link between error and death

The question of whether to inform patients of a previous provider's error was highlighted recently in a discussion posted by the Agency for Healthcare Research and Quality (AHRQ). Thomas H. Gallagher, MD, associate professor in the Departments of Medicine and Bioethics and Humanities at the University of Washington in Seattle, discussed the case of a 4-year-old boy whose brain swelling was not detected in a CT scan.

The hospitals were not named. Gallagher provides this summary of the case: The boy presented to an emergency department (ED) with three days of vomiting associated with lethargy and fevers. A CT scan was performed, and the radiologist reported the results were normal. A rapid test for streptococcal pharyngitis (strep throat) was positive, and the child was admitted to the hospital for ongoing care and given intravenous hydration and antibiotics. Over the next 24 hours, the child became increasingly confused, disoriented, and lethargic. The following morning, his condition worsened, and he had a respiratory arrest. He was placed on a ventilator and transferred to the intensive care unit (ICU).

In the ICU, he was noted to have fixed and dilated pupils on neurologic exam, a sign of serious neurologic injury. A repeat CT scan of the brain revealed severe cerebral edema (swelling of the brain) with evidence of herniation of the brain through the base of the skull.

He was transferred from this hospital to a tertiary care center for ongoing management. At the tertiary care center, the child was evaluated by neurology and neurosurgical teams. Further testing revealed a diagnosis of venous sinus thromboses (blood clots in the veins of the brain), which had led to edema and herniation. Unfortunately, the brain damage was too advanced, and the child was determined to have no chance to survive.

As part of their routine evaluation, the neurology, neurosurgical teams, and the radiologists at the tertiary care center reviewed the CT scan that had been performed in the original ED. Although the findings were subtle, they found that the scan was not normal (as had been reported) but demonstrated clear evidence of cerebral edema. The initial hospital had not recognized these findings and therefore had not pursued further work-up for the cause, which would have been indicated. The neurology and neurosurgical teams thought that if the brain swelling had been recognized at the time, the child could have been transferred earlier, received surgical management, and might have survived.

When it was clear the child could not survive, the pediatricians met with the mother and father to explain that their child was brain dead. Angry and upset, the parents asked repeatedly, "How could this happen? How could the CT scan have been normal and then be so bad in less than 48 hours?"

Due to concerns of legal liability, the hospital administration and the risk management department at the tertiary care hospital had instructed the physicians and other providers to not disclose the misinterpretation of the original CT scan. In fact, they were instructed not to comment on the care provided by the initial hospital in any way. Therefore the parents were never told that an error had been made that may have contributed to their child's death.

Gallagher concludes that the tertiary care hospital was wrong. "In the case discussed, the two hospitals should have had an open dialogue about the case," he writes. "If they determined that a clear error occurred, providers should have found a way to disclose the error openly and honestly to the parents. This outcome would have been ethical, collaborative, and patient centered.

The entire commentary can be found online at