By any measure, it’s a horrifying story. Rory Staunton, a 12-year-old from New York, died April 1 after a seemingly minor cut on his arm became infected with Group A streptococcus, leading to septic shock that fatally overwhelmed him.
A New York Times article this week recounts the frightening and ultimately tragic chain of events: how Rory’s parents brought him to the pediatrician, then to the emergency room. Feverish and vomiting, he was thought to be suffering from a stomach virus and dehydration. He was sent home, then brought back to the ER by his parents as his condition steadily worsened.
Abnormal lab results from his first visit to the ER apparently weren’t recognized or acted upon, the Times reported. Nor were they shared with his parents, who were increasingly anxious and worried that no one was hearing their concerns.
This story is about many things: the death of a child. A bereaved family. A health system that seemingly dropped the ball. Lapses in communication. A failure to connect the dots or notice alarming red flags.
I could write about any of these but I’m going to focus instead on something else: the rarities of medicine, those one-in-a-million complications or tragic outcomes for which most of us are never really quite prepared.
Most of the time this serves the diagnostic process well… except when it doesn’t. Zebras might be uncommon but, unlike unicorns, they aren’t nonexistent and therefore safe to dismiss. Inevitably there’s the rare patient with an unusual problem or atypical symptoms. These situations challenge clinicians to think outside the box – to consider the common things first but to be aware of the less-common possibilities.
Of all the processes in medicine, diagnosis is among the most complex. It requires the ability to think critically, to consider all the possibilities, to collect and study the evidence, interpret the findings and draw accurate conclusions.
Not surprisingly, there can be missteps along the way. There’s a growing body of research into diagnostic error and why it happens. Two-thirds of these mistakes lie within system vulnerabilities – delays in scheduling procedures, failure to follow up on test results, poor coordination of care, inadequate communication that prevents critical information from being shared, and so on.
But about one-third of diagnostic delays and errors are thought to rest with the clinician’s thought processes – for instance, “anchoring bias,” or locking onto key features of the patient’s symptoms too early in the diagnostic process and failing to adjust when later information suggests something different. To put it another way: convincing yourself that the hoofbeats you’re hearing belong to a horse, despite subsequent evidence to the contrary.
How should health care deal with the fact that sometimes there are zebras in the herd? The New York Times article about the Staunton family has drawn more than 1,000 responses, many of them from physicians whose reactions range from empathy to defensiveness.
“As an ER physician, I can tell you that we see hundreds if not thousands of patients JUST like this every month,” one doctor wrote.
Another doctor commented, “If you look at the medicine involved, I would bet out of thousands of 12-year-olds with this same presentation he would be the only one with this type of outcome. While it is very human to look for blame, sepsis in teens or preteens from a cut without other factors is very very rare. And flu symptoms are very common.”
The tenor of some of the discussion suggests, appallingly, that septic shock was such an unlikely possibility it was reasonable not to consider it.
Therein lies one of the issues. If you test for every possibility to rule out even the slightest chance of something rare, the system would rapidly be overwhelmed. But if you fail to recognize that rare situations aren’t impossible, you risk missing a diagnosis that could save the patient.
It’s zero comfort for patients and families to be told they lost the one-in-a-million odds of not being a zebra. The standard advice – speak up, ask questions, advocate for yourself – crumbles in the face of unusual diseases or complications that most people couldn’t possibly be expected to know about or anticipate.
There’s a challenge here for health care. Much of the work in patient safety focuses on errors that are common or that represent a trend. It makes sense, since addressing these can have the greatest impact on the largest number of patients. But where does that leave the rare incidents that, by definition, are rare? Should they be viewed as a fluke that couldn’t have been prevented? Or assigned a lower priority on the grounds that they’re simply not very likely to happen? What about the human cost of failing to recognize that sometimes the horse really is a zebra?
It’s not clear what the answer should be. In the meantime, a family is grieving and in emotional shock, and every clinician involved in this case is agonizing over what they could have done differently. The scars are going to last forever.
Update, July 19: The hospital involved in Rory Staunton’s case has announced several major changes in the discharge process for emergency-room patients. A key quote from Dr. Joshua Needleman, a specialist in pediatric pulmonary medicine at Weill Cornell Medical Center, New York: “The big questions are about how to integrate new information that doesn’t fit with the perception you have formed. How to listen to the patient when they are telling you something that doesn’t fit with your internal narrative of the case. Those are the hardest things to do in medicine and yet the most important.”