Chapter 12: Why We Should Embrace Uncertainty in Medicine

Uncertainty is NOT Dismissal

When I have a doctor’s appointment, I want the RIGHT answer for what is causing my symptoms. Usually that’s easy for a doctor to determine quickly, but not always. The odds of being misdiagnosed increase when we have complex symptoms and less-than-obvious causes.

That’s why my favorite doctors are the ones who share their doubts when it’s called for. 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.

Here’s an example: If half of your child’s class is out with a stomach bug and your child is achy with nausea, vomiting, and fever, you might expect your doctor to recommend fluids and bed rest. Easy peasy. You don’t expect her to tell you she’s unsure what is causing your kid’s symptoms.

But what if your child has more symptoms, like constipation? Or if your pediatrician also finds a mass in the abdomen? You wouldn’t want her to ignore serious signs like these of Wilms tumor, a form of pediatric kidney cancer. You’d hope that she would stop and rethink the diagnosis before sending you on your way.

“I don’t know” tells me my doctor is thoughtful and respectful. That she is paying attention and not ignoring half my list of concerns. That she trusts me enough to be willing to share her thinking –– the possible medical conditions she is considering –– and to work with me to get an accurate diagnosis.

My one caveat is that when a doctor acknowledges they’re unsure, it must be quickly followed by a statement of 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.

What is Diagnostic Uncertainty and How Does It Happen?

The Father of Modern Medicine, Sir William Osler, once described medicine as “a science of uncertainty and an art of probability.” Diagnostic Uncertainty is when any clinician (doctor, nurse practitioner, nurse) isn’t confident they can accurately explain why a patient is experiencing what is bothering them. From a patient’s point-of-view, it’s the communication of a range of doubt of your diagnosis, the cause of your symptoms.

Patients get dismissed when doctors are overconfident. 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. The conclusion is that overconfidence is a key factor in misdiagnosis.

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. 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 were angry at me for questioning their definitive conclusions and 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 are complicated, when there are several possibilities or we’re experiencing an unusual combination of symptoms, we can benefit from an open discussion with our doctor. Of course, while they continue to figure it out, it’s okay for a doctor to suggest treating our symptoms for our comfort.

There are five reasons why diagnostic uncertainty happens:

1. Quantity and Complexity: Diagnosis can be a very intricate process. A diagnostic quality leader, Mark L. Graber, MD, FACP, is the source of one of my favorite quotes about how complicated medicine has become. “There are over 10 thousand diseases and only a few hundred symptoms,” he’s said many times. Currently, there are almost 23 thousand medical conditions. There are new named diseases and medical conditions we didn’t know existed just a decade ago. It’s hard to diagnose a disease that has no name or known cause.

   
   A field of possibilities that large calls for a little humility and a lot of cooperation.

2. Mental Shortcuts (aka Heuristics): Highly experienced experts in all fields use these mental shortcuts. Art experts may identify a painting that’s been attributed to a master artist as a fake based on their gut first, then supported by a variety of tests. In medicine, it refers to an approach to diagnosis that is pragmatic and fast, based on assumptions and past experiences and are most often accurate. Let me stress that: most diagnoses are correct, even when heuristics are used.

   
   Medicine is such a strange mix of science and educated opinion. That’s why your doctor has studied for seven to fifteen years after college. Some primary care doctors and specialists are loathe to admit they’re unsure. Professionals in all fields can feel pressured to come up with a fast answer and a great deal of discomfort between the patient’s symptom reports and the correct answer and treatment.

   
   But sometimes shortcuts lead us in the wrong direction and we have to figure a new route.

3. Unexpected Presentations: The descriptions of many medical conditions are based on how otherwise healthy white men would present with that disease. That’s because most medical studies traditionally studied just white men. That’s changing but it’s still a problem.

   Meanwhile, everyone else –– women, Black, Asian and Hispanic patients, people with existing chronic illnesses and autoimmune conditions –– frequently present differently than otherwise healthy white men do. They still have that disease or condition; it’s just not showing up in the “expected” way.

   
   For example, most patients complaining of neck pain learn it’s most likely due to poor posture, lifting too much weight, sleeping in a “funny” position, or maybe they have developed arthritis in their neck. Those are statistically the most likely causes and your doctor may identify one of those as the diagnosis. However, he may stop there and not explore any other possible causes of neck pain like autoimmune conditions (rheumatoid arthritis or cervical spondylitis) or life threatening causes, (heart attack, viral or bacterial meningitis, and cancer).

4. Rare diseases: A rare disease is one that occurs in fewer than one in two thousand people. That’s 0.05 percent. Diagnostic delay and uncertainty is common for each rare disease because so few people have it.

   
   But there are lots of rare diseases, almost 14 thousand. They represent around 65 percent of all diseases. When you add up all the rare disease patients in the United States, that’s 30 million people; 10 percent of the US population.

   
   I had a friendly math argument with one of my physicians some years back. He initially insisted it was unlikely I had an uncommon condition because it occurred in less than three percent of the population. “I’ve never seen it in my practice,” he insisted. He was looking at the odds of any patient having that condition. I replied that given the number of patients he saw annually, that meant that approximately 75 of his patients contracted that disease every year. I suggested that meant he had possibly missed it dozens of times annually. He thought for a moment, then said I made a good point. He tested me and I got properly diagnosed and treated. I triggered his uncertainty by upending his logic.

5. Training: Medical schools have not trained doctors to deal with uncertainty, to recognize it, embrace it or communicate it to their patients or colleagues. It’s still a relatively new field in medicine and medical research.

Patients get dismissed when doctors are overconfident…a key factor in misdiagnosis.

What Can You Do To Encourage Your Physician To Express A Healthy Level Of Uncertainty?

It’s helpful for doctors to share their thoughts, including their uncertainty, and allowing us to learn more about it. You can break through any hesitancy by asking questions that introduce uncertainty or widen 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 your favorite AI chatbot or reliable symptom checkers [I like Isabel but Mayo Clinic, Blue Cross, Aysa for skin conditions and others offer free services] 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. More about those in two weeks when Chapter 13 is published.

A Note About Doctors Sharing Uncertainty

The person in the white coat –– who seems to have all the power over our medical future –– is also a human with emotions, stress, fears and hopes. So, I want to highlight a short list of remarkable researchers and educators studying how medical professionals feel about sharing their doubts, how they communicate it, how they should communicate it, and how patients feel about it. You can follow and check out the work of Maria Dahm, PhD, Traber Giardina PhD, Lekshmi Santhosh, M.D., M.A.Ed., Dimitrios Papanagnou, MD, EdD, MPH, Allyson Bontempo, PhD, Helen W. Hernandez, and arts educator Alexa Miller, whose work in teaching doctors how to communicate uncertainty has resulted in a series of stories featured by a favorite medical podcast The Nocturnists. The Nocturnists shared this word cloud recently. They surveyed 137 clinicians/patients about "Uncertainty and Medicine" and these are the words that came up most.

I’m not suggesting we permit them to dismiss our concerns or symptoms or gaslight us. We are in control of choosing to engage or not, to walk away, or fire them and get a second opinion if they don’t treat us as humans.

Next Up: Chapter 13: I Read It Online. The Good, The Bad and The Ugly Of Online Medical Info.

© Helene M. Epstein 2025