No One Knows: Does it help when hospitals disclose patterns among cases?

If I am in a car crash, impaled by my steering column but somehow hanging on for dear life in the intensive care unit, what do I need to know about the other patients in the vicinity?

Would it help me heal to know that another person had a car accident and nearly died in a room down the hall? Would the fact that 20 people had been in and out of the ICU over the course of the previous week after car accidents – half of them heading to the morgue – bring comfort?

I think about these questions when I read stories about patients or the parents of patients who wish they knew more about other patients. This is part of a controversy playing out in New Orleans where at least five children died after – but not necessarily because of – contracting the same fungus in the same hospital. The patients didn’t know there was a pattern to their children’s illnesses, that the fungus came from hospital linens, and that other patients had been infected and died, too.

Everyone who reads this blog knows that I am frequently advocating that patients and the public be given more information about their hospitals, physicians, treatments, and every other aspect of the health care system.

But it’s worth pausing here and noting two things about the fungus cases.

First, if Children’s Hospital New Orleans is to be believed – and the hospital has hurt its credibility by keeping secret the pattern of fungal infections for five years – these patients died mainly because of the severe illnesses that put them in the hospital in the first place, not the fungus. They acknowledge that the fungus was a contributing cause, but these were children in a fragile state of health already, susceptible to bacterial infections, viruses and fungal infections. This is exactly why so many patients in the late stages of their disease end up developing pneumonia and dying.

As reported by Rebecca Catalanello in The Times-Picayune, Dr. John Heaton, the hospital’s Associate Medical Director for Patient Quality & Safety, said “that because the mucormycosis diagnosis was a contributing cause of death in already very ill patients – and not a primary cause of death – that the hospital did not treat the cases as sentinel events and did not conduct a root-cause analysis.”

And though Heaton described the fungus as a rare infection, he said that the individual cases didn't stand out in part because the hospital was used to seeing one or two cases a year of community-acquired mucormycosis every year.

Second, what good would have come from the families knowing that their children had contracted a fungus that others in the hospital had contracted, too?

I asked a similar question when the Yakima Herald-Republic and NBC reported on a series of severe birth defects being found in Eastern Washington hospitals. How does it help parents to know that other children with the same birth defects also were born a few months or weeks prior?

There are differences between the fungal infection cases and the birth defect cases, to be sure. And the differences between those patient experiences play into expectations for disclosure by medical providers. To my mind, there are three main reasons why the parents whose children were infected by a fungus in the hospital should have been told about the pattern: patient empowerment, respect for the parent-child relationship, and medical quality improvement.

I will expand on these in future posts. In the meantime, please send me your ideas at askantidote [at] gmail.com.

Photo by Billy Metcalf Photography via Flickr.

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No One Knows: Hidden child deaths from fungus raise question of how much families should know