The rabbit hole 

With a warm smile, punctuated by a quizzical expression, the front desk staff at the imaging center greeted me with “Dr. Last, back again so soon? You’ve become a regular here!” I realized it was my sixth study in the span of a few weeks. The first of those studies was an abdominal MRI, ordered for pancreatic cancer surveillance. Among the many blessings bestowed on me by my family, histories of pancreatic cancer on both sides are likely the least enviable. So, when the report of the MRI told me my pancreas was pristine, I was gratefully thrilled.  

I was also not surprised when the report continued, “incidentally noted are: …”. My “incidental findings” necessitated further diagnostic procedures, all clearly indicated. And thus, I began the kind of diagnostic journey upon which we send our patients regularly.  

Over the several weeks following the initial scan, I underwent a chest CT, a prostate MRI, an echocardiogram, a three-day cardiac rhythm monitor, a CT coronary artery angiogram, and a prostate biopsy. (Fast forward…with gratitude, I’m fine.) In short, I’d entered “the rabbit hole.”  

The Oxford English Dictionary defines such a hole as being “a bizarre, confusing, or nonsensical situation…typically, one from which it is difficult to extricate oneself.” The moniker is apt. My experience did what such experiences often do (and ought to do): it reminded me of what our patients go through as we order a test that so often begets another test. I had the benefit of knowing the jargon, understanding the tests, knowing the physicians involved, and having help getting my exams scheduled. Our patients typically have few of those advantages, and so they count on us to not only send them on their journey, but to help them navigate their passage.  

Here are the lessons I learned from my experience that should be remembered as we accompany our patients on their diagnostic and procedural quests:  

1. Prepare patients.

Unless a test will, without question, give a definitive answer, let them in on the (not so) secret that the test we’ve ordered may result in further testing. This preparation and education also means we should let our patients know what the term “incidental finding” means, and the likelihood that we’ll need to deal with one (or several).  

2. Parse which additional tests are truly needed.

As clinicians, particularly primary care physicians, it’s our responsibility to determine which secondary testing will truly help our patients. Some patients may be skeptical of doctors’ motivations, suspecting that the opportunity for financial gain is driving the advice. It’s our responsibility to determine what’s truly needed to give patients the best, most appropriate care.  

3. Remember that it’s the patient who will determine what has to be done.

It’s our responsibility to educate and guide, and likely give our opinion. But the penultimate decision is in the hands of the person who would undergo the procedure. 

4. Anticipate that patients may see results before us.

The age of patient portals means that, so often, our patients see their results before we’ve had a chance to see them ourselves and evaluate them in context. Patients may have begun the rabbit hole journey before we’ve even spoken with them. We need to be prepared to pull them back from the edge of that abyss.  

Finally, and most importantly, realize that every time we place an order in an EMR, we open the door to additional testing and procedures and punch a ticket for our patients to begin a diagnostic sojourn accompanying Alice down the rabbit hole. We should consider this for every single test, being wary of the implications for patients. Bayes theorem is invaluable for test selection. But we should also honor a diagnostic equivalent of the phrase, “Be careful what you wish for.” 

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.