Doctors often overestimate the knowledge of patients

There’s a pesky cognitive bias that creates a honking big barrier to patients and families making the most of the health advice and services available to us. It’s the tendency of experts to overestimate the knowledge of others.

One consequence of expertise — or even just easy familiarity with a topic or institution or practice — is the inability to remember not knowing what you now know. Think back to your first day of school: You felt clueless, right? Was I supposed to bring crayons? Where’s the bathroom? But within weeks, the whole thing was routine. You couldn’t remember what you didn’t know, and you couldn’t recall what you might have needed to know in order to concentrate on learning to spell.

Given my current, frequent brushes with health care, I experience this all the time: “Just go to the lab and ask them,” I’m told by my chemo nurse. I think: Huh? What lab? Where? Ask who? As my oncologist walks out the door, he says, “You should take folic acid to prevent side effects.” I think, sure. When? How much? Do I need a prescription? Will you write it? And the practice staff assures me, “Oh, you can ask any of us about your symptoms.” Who is ‘”us”? How do I get in touch with each of you? Will each of you know about me? What will you know? What if I only want to talk with you specifically?

There is a rich literature about the extent to which physicians, nurses, health plans and employers overestimate their constituents’ knowledge about health concerns:

  • Physicians vastly overestimate patients’ knowledge of the process of informed consent.
  • Doctors and nurses frequently overestimate their patients’ health literacy.
  • Clinicians overestimate the amount of information they give to patients about medication.
  • Many health websites for the public assume a 9th- to 14th-grade reading level.
  • Many people don’t know the location of key organs (e.g., heart, lungs), even those in which their medical problem is situated.

The effects of these health stakeholders’ overestimation of our knowledge are profound. This is a matter of what information we need, not just how or if we learn it (health literacy). Its impact is reflected in miscommunications ranging from the poor design of hospital signage to the lack of explanations about what it means to be cared for by a primary care team. You can find its impact in pink pamphlets about how to prepare for surgery and the sparse information we receive about how to get after-hours care.

Most of us are mostly well most of the time. And so when we seek care, we often find ourselves lacking the knowledge we need to accomplish health care-related tasks efficiently and effectively. As health care becomes more complex, with more options, providers and interventions, more responsibility for caring for ourselves and our loved ones falls to us. Simultaneously, the stakes of our abilities to make good use of those advances rise, as does our need for a range of very basic information and guidance to help us perform health tasks the best we can.

I know it is brutally expensive to do the kind of basic consumer research on every patient portal, website and pamphlet to find out what we need to know in the way that successful corporations do to attract and inform customers. And it is wildly difficult to convince professionals of all stripes that we need this kind of basic information and guidance — and thus to spend time making sure we really understand what’s going on and what and how to do something about it. Indeed, the overestimation bias among health professionals and other experts prevents them from recognizing the scope of this problem — our knowledge needs — and thus in allocating resources to solving it.

Maybe in our current cost-conscious environment, the cheap old “let ‘em sink or swim” approach is preferable to addressing a well-known, well-documented bias that mostly disadvantages our participation in our own care. We are, after all, a pretty resourceful bunch, us patients. Many of us will figure it out. But there are many of us who, for a variety of reasons, simply lack the resources to ask, to explore, to persist until we are both competent and confident to care for ourselves and those we love. We pay a high price for those pinched pennies.

Jessie Gruman is the founder and president, Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs on the Prepared Patient blog.

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  • FriendlyJD

    Agree completely. On a personal note, I recently reviewed notes from specialists at hospital followup appointments. At discharged, I received prescriptions for 10 days worth of meds and instructions to follow up with two specialists. I took the soonest available appointments, about 4-6 weeks out from my discharge. I, obviously, used up my 10 days worth of meds in that time.

    In the notes, both specialists are incensed that I went “off my meds” and state that I don’t seem to be taking my illness seriously. Actually, I just had no idea I was supposed to take the pills for more than 10 days. I just assumed they were like antibiotics – use ‘em up and you’re done.

  • guest

    “You should take folic acid to prevent side effects.” I think, sure. When? How much? Do I need a prescription? Will you write it?

    I am really sorry, but how does someone with a PhD not know how to go to the grocery store, buy a bottle of folic acid and follow the directions on the label to find out how much to take and when?

    Also, most hospitals these days (the public hospital where I work included) discharges patients with a package of information, which includes printouts on each medication they are being discharged on, and on their discharge diagnosis. These handouts (called CareNotes at our facility) are specifically written to be understandable at a 6th grade level. At our hospital, these handouts are also provided to patients for each new medication they are started on, at the time it is started.

    What do you suppose is the barrier to people reading these materials and becoming more knowledgeable about their illness and their medications?

    • Lisa

      Regarding your remarks about folic acid, I think the OP’s questions were quite appropriate and one I would ask if a doctor recommended an over the counter drug.

      Not all hospitals include as much information in their discharge packets as your hospital does. That said, as a patient, I’d say one barrier about reading and understanding the discharge packets is your ability to concentrate after being hospitalized is minimal. I have 6 surgeries in the past six years. My experience after each surgery is that it took several days to a week before I could read anything more complicated than the funnies.

      • guest

        Good point, I remember having the flu back in 1999 and it look me several days to recover to the point where my brain functioned normally.

        So, what more can doctors do, if patients are too debilitated cognitively to be able to process either spoken or written information about their illness or treatment?

        • Lisa

          Someone should be tasked (a nurse or a PA) with going over the discharge information with both the patient and a caregiver. Also, depending on the reason for hospitalization, follow up by a home care nurse may be in order.

        • rbthe4th2

          I clear almost everything before getting discharged. I never would trust my family. One time I did, and that was a BIG mistake. I know these people can read …
          Randy

      • SarahJ89

        We were so nervous we managed to lose the instructions on our way home from the hospital. I had no idea until a couple of years later, when my husband suddenly remembered, that I wasn’t supposed to be left alone, was supposed to drink a lot of water, etc. I was at the hospital the week before for a lengthy pre-op visit and nothing was every mentioned about after care until after the operation. By that time it was too late to arrange anything and my husband had to leave the next morning for an unavoidable business trip. Lotsa fun.

        • Lisa

          Any thing medical is always ‘fun,’ but that sounds particularly frustrating.

          I’ve been pretty lucky in that post op expectations and limitations have always been part of the pre-op conversation. That doesn’t replace the need for discharge planning and information.

    • Dr. Drake Ramoray

      I disagree with your folic acid statements. I have had patients who are physicians ask me the very same questions about cinnamon for diabetes as you are listing for Folic acid. I don’t know if there is a prescription for Folic acid for the purposes discussed in the article (it would be awesome if their is).

      There is an Rx for high dose Vitamin D that is indicated. How much Folic acid do I need to take, and will I need a prescription for it our very valid questions. Hypocalcemia with secondary hyperparathyroidism from Vitamin D levels in the single digits can be treated with 50,000 IU of Vitamin D weekly that requires a prescription.

      • rbthe4th2

        That’s my other half – Rx plus the regular OTC prescribed by her wonderful endocrinologist.
        Although what you talk about sounds different from her Dr. Ramoray. Her *blood* calcium has gone up to high (for her) but the *urine* calcium studies were like 3.3 or 3.5. I thought that 5-40 meant a calcium free diet. She does put some calcium in her every day, not a lot but um … we haven’t figured out she can be below the calcium free? Negative? She won’t ask the doctor, and she really likes her a lot. LOL.
        Randy

        • Dr. Drake Ramoray

          Calcium, parathyroid, and Vitamin D can be tricky as you can have mild hypercalcemia or hypocalcemia from severe vitamin D deficiency.

          I believe you are referring to a spot urine calcium as opposed to a 24 hr urine calcium. I don’t use the spot much. It’s more convenient but is more effected by hydration status. Some medications, a few genetic conditions, and low body calcium levels can cause a low urine calcium level.

          Spot urine calcium levels have a lot of variability even the time of day.

          • rbthe4th2

            Hmmm do you have any materials for the patient who can handle medical stuff on all that?
            No, these are 24 hour urine calcium studies. Both were in the 3 point something range. That’s what we couldn’t figure out, how everything we read said a calcium free diet was 5-40 range and her 24 hours urine studies, 6 months apart, were that low.
            She has a BIG Vitamin D problem (and K too, the fat soluables).
            Can we pay you for the education? The little lady says she aint asking her doctor. LOL. I think the bone density studies didn’t go well. One of the legs or hips? had a major change, the other went lower also but it wasn’t major.
            Don’t suggest she take a break (if you are married, you’d understand). Any physical restrictions tend to not go well over with her unless she is the one to agree to it (and good luck with it). It took me over 2 weeks to get her to go to the doc when she busted a bone the last time.
            Randy

          • Dr. Drake Ramoray

            The figures you cite are correct. There are other factors that can cause hypocalciuria (a relatively rare genetic condition called FHH (Familial Hypocalciuric Hypercalcemia) and much more commonly medications. Thiazide diuretics can cause hypokalemia and hypocalciuria. It sounds like you are in good hands and further discussion is beyond the scope of this blog. Here is a reasonable link on 24 hr. urine caclium testing.

            http://www.medscape.com/viewarticle/732914_1

          • rbthe4th2

            Oh she loves her endocrinologist! You have to understand, she has a lot of “images”, and the first one is a runner saying, ‘you know you are a runner when you have 3 natural enemies: drivers, dogs, and doctors’.
            Thank you! I’ll see if I can’t get her to look that up. Or if not, I will.
            She doesn’t take drugs, except for thyroid, birth control, and vitamin D.
            I guess what I’m a little confused over is how this is related to endocrinology. The ones I know with endos are all diabetic. The rest, their regular doctor (PCP) gives them the … ? calcium ? or some sort of pill for older women that helps their bones.
            Again appreciate it.
            Happy Doctors Day!!!

        • Dr. Drake Ramoray
  • Dr. Drake Ramoray

    I start by assuming they know nothing, and start by asking the patient what they know about the disease in question. If the initial replay is that they think something else is wrong then that is a good place to start. I then work from there. Kind of like medical students.

  • Lisa

    After five of my six surgeries, nurses went over discharge instructions with me and my husband. In one case, I was just handed the instructions. Luckily, in that instance, I had home nursing care and PT, so there was a chance to go over the instructions again.

    My ortho surgeon has a PA. The PA didn’t go over discharge instructions with me, but he did spend an hour with me pre surgery before both hip replacement going over my surgeon’s pre-surgery routines and what to expect post surgery, including medication schedules. He also made sure that I was set up with a home care agency and would be receiving PT, and had been to the c.o.ag. clinic.

  • SarahJ89

    They actually do that in the ER in our local hospital. I have to say, not much penetrates the fog. They now have printed print outs so at least we can read them when we get home. We used to get illegible, faded NCR pages.

  • guest

    Many people don’t know where their lungs are? Really? Unless they have some kind of neurological problem, I don’t see how can a person make it to adulthood and not know where their lungs are. I’m pleased that my doctor has never pointed my lungs out to me.

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