Do patients have a right to know their doctor’s uncertainty?

Picture this.

You walk into your doctor’s office for an urgent visit for new distressing symptoms.  He (or she) takes your blood pressure, temperature, heart rate.  All within normal limits.  He asks you several questions pertaining to your symptoms, does a thorough exam and perhaps orders a quick in-office lab or two.  You ask him what he thinks is going on.

The quandary

If it’s a slam dunk diagnosis, the branch point in this doctor-patient scenario is relatively straightforward to navigate.  Your doctor will let you know what he thinks and will offer his advice (reassurance, further testing, medication, etc.).  Ideally, a shared decision is made to pursue a certain treatment plan and appropriate follow-up is provided.

Unfortunately, it is rare for physicians to make diagnoses on the spot.  More often, investigating distressing symptoms requires thorough clinical reasoning that involves the consideration of a range of probable diagnoses based on the individual patient’s risk.  Labs, imaging and diagnostic procedures may help rule in or rule out possible underlying etiologies for symptoms, but not all tests are perfect and may cause more harm then good (e.g. false positives or false negatives).  Often times serial office visits are required to clinch the diagnosis, and frequently these symptoms will resolve before a diagnosis is made.

Given that many diagnoses are not made on the first office visit, I’ve offered the above hypothetical scenario to many non-medical friends and asked them how they would want their physicians to communicate uncertainty at the end of such a visit.

The opinions

The most common responses that I received were what I thought as a clinician to be most reasonable: Physicians should attempt to reassure their patients that these symptoms aren’t immediately life-threatening, explain that more visits and perhaps more tests are needed and offer scenarios in which patients should return for a more urgent appointment.  I clearly have smart friends.

What interested me the most was that very few replies to this scenario included a desire for physicians to directly communicate their uncertainty.   In fact, most friends and family would rather their physician not say phrases such as “I don’t know what’s causing these symptoms yet,” or “I’m unsure of what’s going on at this point.”

On the one hand, I understand how this can be unsettling.  I couldn’t imagine patients being super excited to hear that their doctors are uncertain of what’s going on, especially if these symptoms are particularly distressing.  However, shouldn’t patients have the right to know of their doctor’s uncertainty?  Or should doctors protect their patients from further anxiety and perhaps their own professional image by withholding such statements?

My view

In order to maintain the trust of patients and encourage honest and open communication, I think it’s important for physicians to state uncertainty when an explanation of symptoms is unclear or prognosis of disease is unknown.

Although often difficult for both physicians and patients alike, I believe that withholding this information can breed unreasonable expectations, propagate medical paternalism and perpetuate further miscommunication between doctors and patients.

Therefore, I make it a point to include a statement of uncertainty when offering my assessment and plan to patients in situations where a constellation of symptoms don’t immediately add up by the end of an office visit.

Am I right to do this?  Well, I don’t know.

But I do know that either way, I’m going to be honest about it.

Brian J. Secemsky is an internal medicine resident who blogs at the Huffington Post.  He can be reached on Twitter @BrianSecemskyMD and his self-titled site, Brian Secemsky MD. This article was originally written for the American Resident Project.

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  • Payne Hertz

    Your approach is the best. If you can’t figure out what’s wrong, most patients want to know that. If it will take some time and testing to figure it out, make this clear to the patient. If it requires the expertise of a specialist, make the referrals.

    It is frustrating when a doctor “wings it” and just tosses a tentative diagnosis out there which you as a patient know is wrong. Worse yet is when doctors don’t do the necessary testing but toss out a psychiatric “diagnosis” like stress, depression, or conversion disorder, which are apparently the cause of all illnesses that don’t show up on the radar.

    • JR

      In my experience, the more certain the doctor is about the diagnosis from the start, the more likely they are going to assume the patient is a liar or mentally ill if their first round of testing comes back negative.

      Uncertainty is a sign of a good doctor, because those doctors don’t give up on the patient if the first round of testing doesn’t solve the puzzle.

      • Patient Kit

        I have a friend who was recently diagnosed with ovarian cancer. She has talked to me a lot about it because she knew I went through the same thing recently. I urged her to consult a GYN oncologist but she was reluctant to insult her GYN, who wanted to do her surgery himself. Her GYN insisted — with total certainty — that she didn’t have cancer. He told both my friend and her husband several times with — total certainty — that she didn’t have cancer. He even told her that the only reason they were doing a biopsy was to confirm that he was right!!! Well, when he called her with the biopsy results he said “You’re not going to like this…there’s good news and bad news.” and he told her on the phone that, yup, she has cancer. She felt completely blindsided and pushed off a cliff because her doctor didn’t prepare her for that possibility at all. Because he was so certain he was right. I’m still angry about this 6 weeks later just thinking about it.

        My own docs, both GYN and GYN ONC, said and say things like “It looks suspicious”, “we can’t be sure until we get in and do a biopsy”, “There’s always a possibility [that it's not cancer]” and the one that stays with me always and drives me to my followups after an early stage good prognosis: “There are no guarantees”. I find my GYN ONC’s voice saying “There are no guarantees” oddly comforting. Probably because it is honest and true.

        • Lisa

          I’ve had lots of biopsies and you do them because there is a possibility of cancer, not to confirm that you don’t have cancer. Your friends GYN deserves to be fired in my opinion. I hope she listened to you and consulted a GYN oncologist.

          • Patient Kit

            Seriously. And she was worried about insulting her doc by getting another opinion. Part of me wonders whether he just didn’t want to give up the “territory” to a subspecialist and lose the surgery gig. Thankfully, she did eventually get to a GYN ONC a week or so after her surgery. I would have preferred she saw him before the surgery.

            My GYN told me that she could do the surgery but I would be better off having a GYN ONC do the surgery and then she referred me to her awesome colleague. My GYN ONC also told me face-to-face in my hospital room that he talked to the pathologist on the phone several times during surgery and he told me the preliminary findings right away. I had to wait for a week before he staged me because he was waiting for the final micro pathology report, sent me for a CT and took my case to the hospital’s Tumor Board first. But he told me as much as he did know right away. My friend had to wait for the biopsy results to come back and confirm that her GYN was wrong. She went home from the hospital thinking she didn’t have cancer until that “oops! I was wrong” phone call from her GYN. He was shocked that he was wrong. He was so certain that he was right.

          • SarahJ89

            Here’s another reason to be proactive. My good friend was dx’d with kidney cancer. He had surgery. Later he was referred for a clinical trial in which the orginal tumor was somehow “trained” to attack itself. The trial saved his life (he’s doing well after ten or fifteen years) BUT… his treatment in the trial was compromised because the original tumor had been contaminated during surgery. Of course, the surgeon had no way of knowing about the upforseen, life-saving trial. But it made me aware that having a well thought-out game plan, which comes about by taking a few extra steps, is better than just staying in one’s small community and taking what’s offered locally.

          • Patient Kit

            Luckily, I live in the not so small community of NYC, where there are lots of choices of docs and hospitals locally (as long as you are insured). Even so, one of my docs here once considered sending me out of town to see a specialist at Johns Hopkins in Baltimore (when I was a zebra with a nonunion pathologic femur fracture). And sitting in the waiting room at Hospital for Special Surgery in Manhattan, I met patients who were there from Boston.

  • John C. Key MD

    I’ve always tried to be honest with patients–indeed we were taught in medical school not to “bluff” our way through. Unfortunately some patients only want an absolute, definite answer and want it immediately. Kind of like the old saw that dermatologists don’t know what the condition is, but they “name the rash and collect the cash”. One popular family practice preceptor thought patients not only wanted a diagnosis, but a severe one: “Don’t tell them they have a headache,” he would say, “tell them they have migraine” (for all of the people I see today claiming migraine, I guess he succeeded”.

    Honesty is the best policy; the nuances of satisfying patients remains elusive.

    • DoubtfulGuest

      I wonder how many people really want a “severe” diagnosis, as opposed to just wanting to make sure their symptoms will be taken seriously and treated to the best of a doctor’s ability?

      Sure, there are some people in the world who want to be sick and the more dramatic, the better. But there are also many “secondary losses” that result from chronic illness (in contrast to secondary gains which doctors seem to focus on).

      Doctors may hear a patient saying “I want this ‘severe’ label so my friends, family, boss and coworkers will fawn all over me and not make me do anything”. For many if not most people, what they’re really saying is “I need a firm diagnosis and treatment plan so my friends, family, boss and coworkers will give me the benefit of the doubt while I get back on my feet.”

      I’m sure that some people claim to have migraines when they really don’t. But why would anyone need to be told they have a headache? When headache is their chief complaint? Isn’t it up to the doctor to diagnose the type of headache and go from there with a treatment plan?

  • http://blog.stevenreidbordmd.com/ Steven Reidbord MD

    Of course be honest, but it’s all in the delivery. “I have no idea (yet) what’s going on” won’t make anyone feel better, and hopefully isn’t true anyway. From the outset you have a differential diagnosis. A differential implies uncertainty, and that’s fine. “I need a test [or more time, etc] to be certain what you have.” That’s honest, yet it doesn’t connote throwing in the towel or groping blindly in the dark. Depending on the patient and the differential, it may even be useful to review the possibilities briefly.

    • DoubtfulGuest

      I actually have no problem with “I have no idea”, Dr. Reidbord, if the doctor makes it clear that s/he will put in more time and visits to *get* an idea. Yes, of course a differential diagnosis list is good. But I’ve had too many doctors who were scared to say “I have no idea” and came up with “You’re a bad person” instead. One even said “And, I’m not sure, mind you. It’s just, that’s what we say, when we don’t know what it is. It’s what we say.”

      Huh. No, I’m certain that “I have no idea” works much better on all fronts. I’m cool with it. And I did eventually get the correct diagnosis. Sometimes asking patients what THEY think can yield a treasure trove of information…

      • http://blog.stevenreidbordmd.com/ Steven Reidbord MD

        Patients, i.e., people, vary in how regressed, anxious, and dependent we feel when sick. Personality, the suddenness and gravity of the medical issue, and other factors affect this. I entered med school 30+ years ago idealistically aiming to “partner” with every patient, avoid paternalism, etc. I quickly discovered that many, especially those older and sicker, needed a doctor to guide them and calm their dread. Collaboration wasn’t on their radar screen. They sought a doctor who knew more than they did, and would tell them what to do.

        My initial idealism was tempered. Sure, I still prefer to partner with patients, and certainly more patients “are cool with this” than was the case 30 years ago. But it is the nature of illness to make us weak and dependent. That’s not going away anytime soon. I felt the need to counsel some discretion for the author, a medical trainee as I once was. While some patients appreciate the candor of “I have no idea,” many find it unnerving. A new doctor should be tactful by default, until he or she learns the nuances of relating to different kinds of patients.

        • DoubtfulGuest

          I understand, Dr. Reidbord, and I liked your comment. I’ve been sick enough to feel anxious, regressed, and dependent and to need guidance from the doctor. But the experience I described is unfortunately quite common. It often happens independently of the patient’s actual medical situation. I’ve talked with lots of other people about this and heard their experiences.

          All I meant is: when faced with a choice between blaming the patient and saying I don’t know, it seems obvious which is the least harmful. Just adding something for consideration, not going against your advice at all.

          • SarahJ89

            In addition to “It’s all in your head” I’ve also gotten a list of the standard screening tests the “non-profit” hospital employer was currently pushing. This was after several weeks of “It might be cancer” with its attendant long suspenseful waits and a CT scan given with absolutely NO discussion of the amount of radiation involved.

            When we got to the “You’ve been a bad girl and need to do our standard screening” I simply went home and started walking a lot until I felt better. It was quite clear to me that “I have no idea” was what was going on but all I got was withholding of information, scare tactics and, in the end, scolding.

            “I have no idea” really is so much better than all of that. At least you’re on the same page. You can do something with “I don’t know” but not with the kind of dishonesty I’ve encountered.

            And yes, it’s good for you to figure out which kind of patient you have. I applaud you for that. Unfortunately most docs in my area kind of stick with one scenario.

          • SarahJ89

            PS: I felt like nothing so much as a cash cow when we got to the unrelated to my symptoms list of hospital-pushed screenings.

        • EmilyAnon

          Dr. Reidbord, I just took a look at your blog and really liked the discussions, so I subscribed. I don’t think I have any psychiatric issues, or maybe I do. I’m sure I’ll learn something.

        • penguin50

          I, too, am like DoubtfulGuest in my preference to be told the unvarnished truth as it appears to my doctor, including, if it’s true, a blunt “I have no idea.” Then I know where I stand, which is why I go see a doctor in the first place. It took over six months to diagnose my rare disease, and it was very useful at one point to hear a doctor say, “I don’t know what this is, but it could be dangerous” and then to see the look of deep fear that crossed her face. That told me something I needed to know. If she had acted chipper and optimistic and certain, I would have been deceived.

          I realize that not all patients are like me, and I can appreciate the difficulty in guessing and then establishing the right tone for each sort of patient. I try to help doctors understand my preference by saying at the outset, “I really want to know exactly what you think with zero sugar coating. I don’t want to have to guess.” If there is a better approach, I would love to hear it. Some accept this; others seemingly refuse on principle to be honest and straightforward, or perhaps they simply can’t; perhaps it would feel too threatening to them to hear themselves say difficult truths aloud.

          I can see that other patients might feel consoled to have diagnostic and prognostic information couched in reassuring phrases that everything may be quite fine after all, despite the uncertainty. But when I see a doctor, I want to take advantage of his or her technical expertise, not have my emotions manipulated so that I “feel better.” I want to walk away knowing more about my condition, not feeling hopeful despite the facts. “Knowing more about my condition” includes knowing that my condition has unknowable aspects.

          By the way, you know who gave me one of my best medical assessments ever? A fellow patient in the radiology waiting room. He had had all too many medical woes of his own, and that gave him the ability to ask the most astute series of questions that anyone (including, by then, fourteen doctors) had asked me. And guess what—his very bluntly delivered diagnosis was correct. And although I realized I could not depend on the diagnosis of an untrained, lay stranger, it did add up and “feel right” and it prepared me for what was to come. A couple weeks later, a doctor delivered the official diagnosis. It came as no surprise.

          • DoubtfulGuest

            That’s pretty nifty, penguin50, about the way your correct diagnosis came to light. Very well said, overall. I’d like to know more about which cues a patient might give that would inspire doctors to be less straightforward with their statements.

            I hate to be cynical, but here goes: in my experience, it seems like more of a demographic thing. Until recently, it seemed no matter what I’d say or do (I assume this happens to lots of people), a doc looks at a young-ish female patient and interprets it as “Doctor! Please, dumb it all down for me. I can’t handle any BIG words. And stay upbeat, okay? Because if you give me any facts, that would be SCARY, and I might become *anxious*.”

          • rbthe4th2

            Couldn’t have said it better …

        • buzzkillerjsmith

          That’s right. You have to be able to assess how much or how little info to give and you have to be tactful. And illness is infantilizing for many people.

          “I have no idea” is not tactful.

          • rbthe4th2

            I would rather have that then the its all in your head or the like, only to find out months later after tons of testing and getting sicker, etc. wasting time, money, and all that, the MD who stated it was not man enough or human enough or doctor enough to tell me that.

        • SarahJ89

          How about “We’re not clear yet” or something that indicates you’re not planning on staying in the “I don’t know” place.

  • Lisa

    As a patient, I can deal with my doctor’s uncertainty. I just want to know that my symptoms will be taken seriously and if a cause isn’t immediately apparent that more testing can be done.

    My oncologist once told me she had no idea what was causing my symptoms (vision problems) but she made a referral to an ophthalmologist. She also reassured me that she would order more testing if the ophthalmologist couldn’t diagnosis my problem. I was happy with the approach. I felt like my problem was taken seriously.

    It turned out that I had developed cataracts after taking Arimidex for two months. My sister, who is also my OD, says I did not have cataracts when she examined me four months earlier.

  • DoubtfulGuest

    I agree, Dr. Secemsky. I had a thought that I’m not sure about, just thinking of the people I know. This may not apply to your friends, but in my experience, people who are least comfortable with doctors’ direct expressions of uncertainty may also be the least likely to share responsibility for health outcomes. I wonder if it might be in doctors’ best interest to be very direct about uncertainty at all times, and consistently document how it’s communicated to patients.

    For my part, what I really need to see is motivation to help. I expect 100% honesty and forthrightness from my doctors. I’ve only ever been harmed or had increased anxiety when doctors tried to deceive me.

    • rbthe4th2

      Or when docs who use the ‘psych’ diagnoses to hide their lack of going back to the research and examining their patient.

  • drval

    I usually offer my differential diagnosis, along with my current thinking regarding which one(s) are more likely, and why I think that some are unlikely. I briefly describe the tests/procedures/physical exam maneuvers that will confirm or rule out certain diagnoses. I don’t say “I don’t know what this is” – but “these are all the things (that I can think of) it *could* be.” In fairness, I sometimes leave out early discussions of possible frightening diagnoses (e.g. cancer). I address those later if they are confirmed to be likely.

    If all the tests come back negative and there is nothing further to evaluate, I will ask the patient to look out for signs that could indicate that there is something concerning going on, and come back if symptoms change/worsen. I usually try to find a plausible explanation for the complaints and will offer my best guess in the absence of a confirmed diagnosis. I make my uncertainty clear about my guesses though. I worry a lot about missing an important diagnosis and try very hard to ally with my patients to keep a look out for concerning symptoms, even after the visit is over.

  • Rob Burnside

    I’m not at all certain the “slam dunks” are a major problem. I think most difficulties arise in the differential diagnosis department, or when there are many treatment options with no clear “winner.” Prostate cancer is good example of this last conundrum. And finally, I’d like to dispute the old saw, “Close only counts in hand grenades and horse shoes.” I think it can and should count in medicine, too, as long as it’s clearly elucidated and doctor and patient understand the ramifications, for better or worse.

    • SarahJ89

      Totally agree. Grey is a common colour in life, no matter how much we try to evict it from our crayon box.

      • Rob Burnside

        And then there was “Burnt Sienna”….

        • SarahJ89

          And Raw Umber. Crayola, now that I think of it, really had a lot of confidence in the colour sense of us little kids in the fifties. Well, except for that puzzling icky pinky-orange “Flesh.” That was weird.

          Red and black get snapped up immediately in psych settings. Never enough red or black crayons. They should make special red-black packages for OTs in psych settings.

          • Rob Burnside

            Yes Sarah, who can forget “Flesh”? Raw Umber, too. And I agree–they should have doubled up on Red and Black, and maybe Green (light or dark).

            I ruined our only TV with those colors, and some sort of mylar sheet applied to the screen for television’s first interactive cartoon show. It had an outer space theme. I imagine thousands of sets were ruined the same way nationwide.

            No wonder we Boomers have such a bad rep!

          • SarahJ89

            “I ruined our only TV with those colors, and some sort of mylar sheet
            applied to the screen for television’s first interactive cartoon show.”
            OMG, thanks for the laugh. What a mental image it conjured up. “But Mom…”

          • Rob Burnside

            Yes, she was a saint. I wasn’t. Reminds me, Mothers’ Day is fast approaching. Though I never knew what to get her, she was always happy with a handful of daisies.

  • DoubtfulGuest

    You’re right, I guess those are primary losses. I don’t actually know anyone who gets privileged treatment from having symptoms. I think some doctors actually imagine there’s a limousine, tiara, and “good china” in the picture.

    It’s more like “if you’re really lucky, people won’t get mad and call you lazy”. Or perhaps each doctor has one verifiable “tiara” patient, who ruins things for the rest of us…

  • DoubtfulGuest

    It helped me to read up on Talcott Parsons and the sick role. You probably are way ahead of me in understanding why doctors behave the way they do. But I agree, there seems to be a fundamental conflict in their expectations. Docs need patients to allow them thinking time and be, you know, patient. But they also get really upset if they think we don’t want to get better. In fact many of them just assume we’re having a swell time with the whole process, as if there’s nothing else we’d rather be doing. :/

    • SarahJ89

      Talcott Parsons. There’s a name I haven’t heard in a while. Thanks.

  • http://www.myheartsisters.org/ Carolyn Thomas

    I come at this question from two perspectives: from a heart patient whose MI was misdiagnosed with acid reflux by a physician in the Emergency Department who sent me home despite textbook Hollywood Heart Attack symptoms of central chest pain, nausea, sweating and pain down my left arm. Not only did he tell me with great certainty that it was NOT my heart, but he then pointed at me and pronounced confidently: “You are in the right demographic for GERD!” My second perspective is one experienced as a bystander this past weekend when a close friend was admitted to hospital with serious and sudden-onset neurological symptoms. Within hours, she was unconscious and on life support in ICU – with absolutely no diagnosis in sight. Test after test, CT scans, MRI – and the best the docs could tell us was that they were “mystified” by her case. They carefully outlined the options they were considering, which tests might tell them what, but none of us listening to them objected to that uncertainty. Instead, we were grateful to have their honest responses, adult to adult, as they tried desperately for 48 hours before finally hitting upon a diagnosis.

    Which option is preferable to patients? The latter, of course.