“I don’t know.”
Why diagnostic uncertainty deserves to be embraced by patients and doctors. Part 1
Call me crazy but I’m happy when my physician tells me, “I don’t know.” Yes, I want an answer to what is causing my symptoms. However, I want the RIGHT answer, not the most likely one based on statistics which may or may not apply to me. (More about that in Part 2) I’m seeking accuracy, not speed. Of course, I expect my doctors to first rule out any life-threatening conditions quickly and then we can be more leisurely in exploring the diagnosis.
What is Diagnostic Uncertainty and When is it a Good Thing for Patients?
Diagnostic Uncertainty is defined as the subjective perception by a clinician (doctor, nurse practitioner, nurse) of an inability to provide an accurate explanation of the patient's health problem. From a patient’s point-of-view, it’s the communication of a range of doubt by your clinician of your diagnosis, the cause of your symptoms.
“I don’t know” tells me my doctor is thoughtful and respectful. That she trusts me enough to be willing to share her differential –– the list of possible medical conditions she is considering –– and to work with me to get an accurate diagnosis. Without that honesty and trust, we are left with gaslighting, heuristics, dismissal and worse. My caveat is that when a doctor acknowledges uncertainty, it must be quickly followed by a statement of her commitment to stick with me to get the necessary answers. Tell me you don’t know but then promise me you won’t leave me.
The flip side of uncertainty is overconfidence. In May 2008, The American Journal of Medicine devoted a whole issue to the question, “Diagnostic Error: Is Overconfidence the Problem?” “Diagnostic error” is the professional term for misdiagnosis. It was co-edited by Mark L. Graber, MD, FACP, a leader in identifying, defining, and fixing diagnostic errors. The conclusion is that overconfidence is a key factor in misdiagnosis and is impacted by the doctor’s experience, training, state of mind, cognitive biases, energy level, and focus to get the diagnosis right. It’s a multistep process that can be resolved in a single visit or multiple visits to various specialists. Or never resolved.
“Tell me you don’t know but then promise me you won’t leave me.”
When my son went through one 8-year period of diagnostic limbo –– and nearly died at 15 –– we had plenty of physicians who were confident they had the right answer and were angry at me for questioning their confident conclusions. At the same time those specialists told his pediatrician, in letters I didn’t see until years later, that his was a very complex case and they had doubts. Meanwhile, they told me I was a bad mother for doubting them. In reality, their analysis was wrong, repeatedly.
How much better would it have been if just one of them turned to me and said, “This is a complex case and I’m not certain if all of his symptoms fit the diagnosis. So, let’s see if we can work together to find the root cause of what ails him.”
When our health issues aren’t easily evaluated, when there are several possibilities or we’re experiencing an unusual combination of symptoms, we benefit from an open discussion with our doctor of her questions and concerns. Rather than being treated for the wrong thing, it’s okay for a doctor to suggest treating any symptoms for our comfort as long as they don’t fixate on those symptoms as the full answer and continue to seek an accurate diagnosis.
Julia Berg’s Story – The Benefit of the Doubt
I have had the great pleasure to work with some impressive patient safety advocates who know that their loved one would be alive today had only one member of the medical team expressed their uncertainty out loud or if that uncertainty had been clearly expressed to the patient and their family.
Dan Berg is a patient advocate in Minneapolis. His daughter Julia died at the age of 15 after an unnecessary gallbladder removal surgery for what turned out was a misdiagnosed case of mononucleosis. He blames the lack of expressed uncertainty despite seeing that “as doctors picked up her chart, they looked at it and would say ‘that’s weird.’” In a website devoted to Julia Berg’s life and legacy, as well as her parents’ dedicated work to prevent this from happening to others, he writes, “…here’s what I find to be the common denominator: Everyone involved in Julia’s care gave someone else the benefit of the doubt. The gastroenterologist ceded to the surgeon; our pediatrician to the specialists; the surgeon to the anesthesiologist; the PACU nurse to the 6th floor. We, Julia’s parents, to the whole system.“
If only the doctors gave the same benefit of the doubt to Julia’s parents. Dan and his wife Welcome Jerde tried to call the medical staff’s attention to a series of post-surgical indicators that were alarming but their attempts were ignored. They were shut down and she died.
What can you do to encourage your physician to express a healthy level of uncertainty?
The most important part of resolving any health problem is to be properly diagnosed in the first place. I believe it’s helpful for doctors to share their diagnostic process, including their uncertainty, if they have any.Patients can break through any hesitancy by asking questions that introduce uncertainty or a widen the differential, the list of possible medical conditions to watch for.
1. Start by welcoming the words “I don’t know” or “I’m not certain” from your doctor.
2. Be clear and concise in your list of symptoms and the key details associated with them. Here and here are guides to doing so.
3. If you feel that your symptoms are not being fully addressed, ask this powerful question, “What else might it be?”
4. Another key question to ask is, “What kinds of changes should I watch for?” or “If my symptoms get worse, what should I do?”
5. Use reliable symptom checkers before you see your doctor so you can understand how to describe your symptoms. Or refer to them after your appointment if you feel that your diagnosis has been rushed in the office.
Next week, I’ll publish Part 2, discussing why Diagnostic Uncertainty happens.
© Helene M. Epstein 2024
Thanks Helene, it's a very interesting point of view and one that requires patients to be open-minded too. I think I'd feel okay if I heard my doctor say, "I don't know...yet." This speaks to your point that your doctor is showing a commitment to finding the RIGHT diagnosis!
Protectors of the establishment are defensive about new hypotheses and insist on painting disease and health in black-and-white, deterministic terms. Patient suffering is deemed nonexistent in order to uphold outdated models of disease. In particular, a stark failure to update one’s priors is evident.