But what's WRONG with her?

I've been on a pediatrics rotation for three weeks now. I've encountered several frustrations on this rotation, but one that I've found rather surprising is our inability to always answer the question that every parent wants to know when their child is sick: what is wrong with them? WHY does he have a fever? WHAT is causing her rash? HOW did he get sick? Often the answer is something no one wants to hear: We don't know.

One case that sticks with me is a patient we sent home recently after she was admitted for a "rule-out sepsis workup". We do this in little babies for several reasons. One is that they really can't tell us what's bothering them, so we have to check everything. But another is that babies can get some scary infections from birth despite the best precautions, like HSV encephalitis or Group B Strep sepsis, and they require a spinal tap or blood cultures to diagnose these life-threatening illnesses, not to mention inpatient treatment at a hospital. Not all babies who are 4 weeks old who get a fever will have one of these scary infections. Many will just have viruses. But we can't sort out the not-scary ones from the scary ones, so they all get the workup.

This was my patient's second workup. She'd had one earlier in her little life with no obvious source of infection and she recovered well. Even though she was older than our usual cutoff she was very sick when she came to the emergency department, so she was actually admitted to the intensive care unit for a few hours until she was stable enough to come to a less closely monitored floor. Mom was very frustrated with her stay, since her blood, urine, and spinal fluid cultures weren't growing any bacteria and her viral swab was negative.

Just two of the many tubes used in a rule-out sepsis workup.

"It's most likely a virus," my attending (aka head doctor) told her. "There are hundreds of viruses out there. We can only test for a few of them, and all of those have come back negative. But we've ruled out the scary stuff."

"But is it my fault?" Mom asked. "Is it something I'm doing? We're very careful with her, we don't let her around many people, we boil her bottles, we wash her clothes separately. What else can I do? Don't tell me it's just another virus, I want to know why she keeps ending up in here!"

I wish I had an answer. Going into medicine, I thought that if I studied hard enough I would learn about all the diseases it was possible to have, and would be able to diagnose any patient. I think a lot of patients have this perception, too. If you don't know what's wrong with them, you're simply not smart enough. Shows like House perpetuate this myth each week with the brilliant doctor who figures out what everyone else missed. There's always an answer.

What was hard for me to learn in medical school is that in real life, it doesn't matter how smart you are or how much you know. The fact is that we never find an answer for many patients. It's extremely unsatisfying, both for the patients that recovered on their own and for the patients that are still sick with no obvious cause. For many, not having an answer is worse than a terrible diagnosis.

I'm still coming to terms with the uncertainty of medicine. As one physician I know put it, "I used to think medicine was like simple math. You plug in all the variables for the equation, all of their symptoms, and you end up with the answer." If only it were that simple.

Have you or someone you know ever been the subject of a medical work-up without an answer? Have you ever taken care of a patient who never received a diagnosis? How do you deal with uncertainty in medicine?