When impressive science fails to impress patients





My first thought would be that such a reaction represents the power of anecdote over clinical data, but Dr. Zuker sees more than that. She sees it as the difference between how doctors are trained to view the world and how people untrained in medicine and science view the world, and she uses a rather interesting metaphor to convey this difference:

It is medicine’s eternal quest, these days, to sell impressive science to unimpressed patients, and it is hard to think of a group less equipped to do it than doctors. Doctors are specifically trained not to think like normal people, not to see what others see or to reason as others reason. They — er, we — come to operate in an atmosphere so thin, so heady and attenuated with the power of statistical analysis, that one might wonder whether we are really on the same planet as the patients we try to convince of our truths.

“Exercise helps the elderly.” The doctor sees, from a perch suspended somewhere up in the sky, a large football field filled with the elderly. There are thousands of them down there, all dressed in sweats and sneakers, dumbbells at their feet. Half of them are using the dumbbells, or are down on their backs, doing leg lifts. The others just stand around.

Over the years, of course, the ranks thin. The doctor watches, counts. It begins to look as if there are more exercisers left. After decades, there are definitely more exercisers. Of course, there are still a few sloths standing around (and one of them looks suspiciously like my mother). But by and large, the exercisers come to rule the field.

That is the view from on high. Down on the field, of course, the view is quite different. You are standing in a thick crowd, minding your own business, living your life, but you cannot help noting that the man over there threw his back out with all that exercise, and the woman next to you, grunting to lift her dumbbell, had a heart attack. You cannot see to the other end of the field and have no idea what is happening there. But watching all the sweating and grunting and seeing some of those exercisers disappear anyway, you decide to opt out.

This is one of the best metaphors for the gulf between how we as practitioners of science-based medicine and patients see clinical and epidemiological research that I’ve ever come across. The aspect of clinical research that is hard to explain to patients is that interpreting the results of clinical studies and applying them to patients is entirely a matter of probabilities. From clinical studies, you can conclude that exercise will increase a person’s chance of living to a ripe old age. However, some people, either through good genes or sheer luck, manage to make their way through life without exercising and live to a ripe old age anyway. (Think George Burns, who lived to 100 despite a love of cigars and booze.) Similarly, we can say that, by and large, smoking can greatly increase your risk of heart disease, lung cancer, and premature death. But, then, everyone knows someone who smoked for 70 years and died at age 85 of old age, apparently suffering few ill effects from the thousands upon thousands of cigarettes he smoked. Indeed, heavy smokers have “only” approximately a 25% lifetime risk of developing lung cancer. That leaves lots of smokers out there who never develop lung cancer and makes it easy for some to ignore the fact that heavy smoking increases one’s risk of developing lung cancer by a huge amount and that lung cancer was considered a rare disease before the advent of cheap mass-produced cigarettes. Now it’s consistently in the top two or three causes of cancer death, and that appears to be entirely due to tobacco use.

It’s sometimes very hard to overcome the power of anecdote and patient experience, even for such clear-cut cases. For example, take the rather common discussion of the pros and cons of breast conserving therapy (lumpectomy) versus mastectomy for breast cancer. Every surgeon who does breast surgery will get the occasional patient who demands a mastectomy for a small tumor that would be most appropriately treated with lumpectomy. In my experience, the reason almost always boils down to a bad personal experience. Often such patients had a close relative or friend who had breast cancer treated with lumpectomy and recurred. Often, if you probe a little more closely, they will tell you the horrific tale of how the cancer ravaged a loved one after it recurred. They become convinced that it was because the deceased hadn’t undergone the more radical treatment of mastectomy that her cancer killed her. No amount of citing the three decades of large studies demonstrating that five and ten year survival are the same for lumpectomy and radiation therapy as they are for mastectomy will sway them. The patient doesn’t care; she wants a mastectomy. This is even more true when you inform her that there is around an 8% chance of local recurrence with lumpectomy but that it doesn’t affect the overall survival rate. All she hears is that there is nearly a one in ten chance of the cancer coming back in her breast after a lumpectomy but a less than 1% chance of its doing so after a mastectomy. Statistics tell the doctor that her chances of long-term survival will be the same with a lumpectomy as with a mastectomy. The patient’s experience tells her otherwise. Therefore, she insists on a mastectomy, and, because it is a perfectly acceptable treatment for breast cancer and because she has the right to control what happens to her body, she usually gets it, even though usually more than one surgeon try to talk her out of it and even though she could surely have been treated for her cancer without losing her breast. This same phenomenon seems to be progressing, at least from my–forgive me–anecdotal experience. Women with small cancers seem to be requesting more and more to have both of their breasts removed, even though such a prophylactic measure can be justified scientifically primarily in women with a genetic mutation or a family history that puts them at a very high risk of breast cancer and such operations are not without a cost in complications and decreased quality of life. Such a trend away from less radical surgery towards even more radical surgery is also being fed by us physicians as well in the form of ever more sensitive imaging modalities like MRI that find ever smaller cancers that may never develop into life-threatening disease or find small pockets of disease that normally wouldn’t have been detected before and would have been “mopped up” with post-lumpectomy radiation therapy.

It is this gulf in perception that will lead some patients to refuse chemotherapy even when there is clear-cut evidence of a significant survival benefit or sometimes even in the case when it is the only curative treatment available. When this occurs, it is often because the patient either knew someone who underwent chemotherapy and died anyway, even if the cancer was a high mortality cancer that chemotherapy had a small chance of curing, or someone who had a complication from chemotherapy, such as neutropenic enterocolitis, and died from the complication rather than the tumor. From their “ground level” perspective, they don’t see that the number of surviving patients with this particular cancer at this particular stage who receive chemotherapy is far larger than the number of those who don’t receive chemotherapy. They may not even realize that in the case of some tumors (leukemias and lymphomsa, for instance), virtually no one who is not treated survives his or her cancer. All they see is that someone they knew had chemotherapy and died from it. Indeed, various “alternative medicine” sites do their best to feed this perception by emphasizing the complications of chemotherapy, using terms such as “poisoning” and “burning” and making incorrect claims that chemotherapy harms more patients than it helps.

If the power of anecdote can be difficult to overcome in such clear-cut cases, imagine how hard it can be to do in cases where the decisions are not so clear cut or where the treatment proposed offers only a small benefit. One such example is whether or not to use adjuvant chemotherapy after the treatment of various cancers, where, depending upon the cancer and the stage, the increase in absolute chances of survival can range from as little as 3% to as much 20-25%, but rarely more. In the case of stage I breast cancer, for example, the absolute survival benefit due to adjuvant chemotherapy is on the order of 3%. Even so, most patients will still opt for even this modest benefit. Consider next the case where the literature and studies are either lacking, of poor quality, or multiple and in conflict, and you can see why patients, not to mention physicians, will base their decision more on personal experience than science. All of these are barriers to practicing science-based medicine.

Dr. Zuker suggests some strategies to persuade the patient:

Good doctors learn some tricks, over the years, to let patients see what they see. It helps, sometimes, to descend part of the way down from the sky and give a smaller version of the big picture. (“Of all my patients, it’s the ones who exercise who do the best.”) Sometimes it helps to get down completely, and see what the patient sees (“Your grandmother smoked till she was 90, but you may not be so lucky.”)

But sometimes there is no convergence of views. The patient who sees only from the ground, the doctor who sees only from the sky may simply have to agree to disagree, and have the same dialogue over and over again.

Another way we in medicine can overcome this gap, it is suggested, is to develop tests that help us predict far better than we can which patients will respond to which drugs and which patients are at higher risk for various complications. This “personalized medicine,” based on genomics and other factors, is at present a hot area of research, but I’m not entirely convinced that it will narrow gulf between patient and physician perceptions that much, because even if these tests can produce more precise information upon which to base treatment choices, it will still come down to a matter of probabilities. It will still come down to a matter of the gulf between the perception of physicians looking at the stadium from the air and the patients at ground level. The only difference will be that we’ll be saying “patients with this genomic profile” are more likely to respond to a treatment than those without. I’m not sure that will help bridge the gap that much.

Of course, I would point out to Dr. Zuker that it is not only patients who can fail to see the forest for the trees. Doctors often fall into this trap as well. If, for example, we see a treatment resulting in a bad outcome in two patients in a row, we are just as prone as anyone to react by changing our approach, even when the scientific literature tells us that we are using the most efficacious treatment available and that the last couple of bad outcomes were almost certainly a statistical fluke. At the clinic level, dealing with real patients and real complications, we physicians often can’t see the “whole picture” either, and that is one reason why it is so important for us to stay current on the medical literature and to be willing to reach out to their colleagues for advice. In my experience, surgeons tend to be particularly prone to this “last disaster” sort of thinking. Sometimes this is a good thing, as in when a string of wound infections leads one to wonder if one’s sterile technique is not what it should be, but it can also lead to major changes in treatment choice based on anecdotes.

In the end, bridging this gap in perception is largely a matter of communication. This is one subject for which doctors are generally not well trained, either in medical school or residency, and one area that I wish I had become better at. In a sense, even now, I am still learning and still trying to improve. However, as Dr. Zuker points out, often that isn’t enough, and, as I like to point out, it is this gulf that makes it all too easy for practitioners of dubious unscientific medicine to persuade patients that their unproven or ineffective nostrums are superior to science-based medicine.

Posted in: Clinical Trials, Public Health, Science and Medicine

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23 thoughts on “When impressive science fails to impress patients

  1. mschwall says:

    Very insightful post and very relevant to an ongoing discussion amongst my Physical Therapist colleagues as we do battle against the fringe element of our own profession.

    It has always intrigued me that those espousing scientifically unfounded pseudotreatments always seem to find a strangely willing constituency that seems reluctant to accept scientifically established effective treatments but will embark on a course of pseudotreatment without hesitation. Perhaps the insights afforded by this post will help to combat this troubling trend.

    It will always be an uphill battle when we fight with the limitations of science and proof against those with unlimited imagination and unsubstantiated flights of fancy. But it is a battle that we will ultimately win I am sure.

    Thank you for your efforts in promoting science and reason. It is only in this way we are able to combat those who so willingly prey upon the otherwise ignorant.

    Mark F. Schwall, PT

  2. Oldfart says:

    Dr. Abigail Zuker may well have explained much more about human nature than she intended. Wondering why Homo Sapiens Sapiens took so long to develop a technological civilization despite having the same brain that we do, it may well be that having a rational mind is not stronger than having an insular view. That the tree which leads to modern civilization is much more like a very bushy shrub with dead-ends where humans spent a great deal of their time defending themselves and their hard-earned world view from external attacks. It seems that being fixed in our ways is a much more common human state than being experimental and why that is so might just be because we can only see our small part of the playing field and that that is all we saw for the last 198,000 years or so.

  3. overshoot says:

    “War is fought by human beings”
    – Carl von Clauswitz

    Perhaps it’s just my own insular experience, but this seems to come up very often with regard to immunization. How often do we hear “I got the shot and still got the flu?” [1] Especially as those of us who remember measles in particular age out of the circles where parents of small children get their tribal knowledge, the perception of relative risks from infectious disease will keep shifting.

    [1] Never mind it probably wasn’t even influenza.

  4. james gaulte says:

    Another great entry.You guys continue to amaze with your insights,writing skills and seemingly endless supply of important essays. Thank you.

  5. Michelle B says:

    Superb post.

  6. Wicked Lad says:

    Terrific post, Dr. Gorski. You sharpened my (lay) thinking about where our perceptions come from and helped me understand better the attitudes of others toward science-based medicine as opposed to scams, quackery and sloppy thinking.

  7. BlazingDragon says:

    Thank you for writing this article. Doctors need to work on this area a lot. One thing I’ve found with doctors is that the uncertainty of medical treatment bothers them as much (or more) than it bothers the patients, and many doctors react by becoming ossified and rigid in their thinking about how to treat any given condition.

    One point I didn’t see in the post was that the reason why patients have trouble seeing the science behind good treatments is that going by pure probabilities makes them feel like nothing more than numbers. Being treated like a number is obviously good science and the best way to practice medicine (given the alternative of anecdotal treatment), but it is still dehumanizing and demoralizing to realize you are nothing more than a number and your chances of getting better or getting worse (or even dying) are not “up to” you.

    One way doctors could improve in this area is by realizing that not all patients are covered by such probabilistic, deterministic outcomes (or are not covered very well). Realizing that a small fraction of your patients don’t fit in with the rest of the population and treating them as best as one can would do a lot to make the overall experience with doctors better. A few people “chewed up and spit out” by probabilistic medicine make for easy prey for CAM practitioners and make loud and convincing “converts” if the CAM treatment “works” (i.e. they get better on their own and think the CAM was responsible).

    Being a patient who is about 1 in 1000 for allergies (among other things) makes this a much more personal issue for me. I’m scientist, I work with probabilities and numbers all the time, I understand what medical studies mean, and none of this helps when the doctor tries to treat my allergies like the other 999 people (when it doesn’t work, it is always my fault for “bad attitude” or some other equally ridiculous cause, or they just give up trying at all and tell me I’m gonna have to suffer until I end up in the ER with something life-threatening (and that’s not hyperbole, I’ve actually been told that on more than one occasion)).

  8. drval says:

    Fantastic essay. I really enjoy getting to the underlying reasons for behavior – and you have certainly done so here. Maybe we docs need to use the art of story telling to get folks to accept the science-based decisions that are the most likely to benefit them? Like good therapists, we need to help people to overcome their transference issues so that they can make healthy decisions. Perhaps our psychiatry peers could be good advisors in this endeavor?

  9. pec says:

    “subjects in these large efficacy trials are real patients who have the disease in question, but also have all the other things that real patients have. They are often taking other drugs for other reasons. So the new drug in question is often studied in combination with other drugs that the subjects happen to be taking.”

    No. Do you realize how many subjects you would need to analyze the effects of even several different drug combinations?

  10. PalMD says:

    pec, your a fucking idiot. This is one of the most insightful pieces of clinical writing i’ve seen in a long time, and if you had any clue what it was like to work with actual people, you would soil yourself in fear and uncertainty.

    (did that sound a little harsh?)

  11. Michael X says:

    Wonderful essay.

    I liken it to handwashing. Before doctors washed their hands tons of people died, though many people lived. After they began handwashing, lots of people still died, but many more people lived than before. The moral is: It’s not perfect, but it helps, and you’re better off with it that without it.

    I know this sounds terribly simplistic, but it’s short, sweet explanations like this, and Dr. Zuker’s fantastic analagy, that help people along.

    And don’t forget, after talking to some psychiatrists, hit up some theater artists, advertisers and even PR reps. Story tellers and product sellers are fantastically good at using words to get what they want and expressing the same ideas in different ways.

  12. BlazingDragon says:

    What happens when you have a condition that a clinical trial won’t cover? All probability- and evidence-based treatments go out the window. One is left making educated guesses. Or one can just assign anti-depressants and tell the patients to get lost when the patient says they don’t work.

    The post above is a nice discussion of how to apply medicine to the population in general, but it leaves me feeling cold because, for many conditions, no one will ever pay to do a trial. It’s too rare and won’t benefit enough people… yet it costs me a poorer standard of living every day and I have yet to find a doctor who will treat me as the oddity I am instead of trying to apply probabilities to me (which never seem to work right, even simple aspirin gives me odd side effects).

    As far as I can tell, no one discusses what to do with the medical oddballs. We just get left out in the cold or get told “it’s all in your head, if you just had a better attitude, you’d get better.” I guess it’s not worth enough $$$ to figure out what to do with people who have rare presentations of common conditions. It’s not sexy like characterizing a really rare condition either.

  13. Fifi says:

    BlazingDragon – Sometimes it IS a psychological not a biological issue. I’m not saying or inferring this is the case vis a vis you but it’s a common enough that even lay people know what a hypochondriac is.

    The obvious issue with doing a trial on a person with a unique response is that if there’s only one person with a particular response there’s no one else to participate in the trial but the one unique person.

  14. docj says:

    I have occasionally tried to express the concept by reference to driving, since it is a common activity most people choose to engage in every day that is relatively risky. It is also, interestingly, a risky choice where most people seem particularly unswayed by anecdotal evidence of danger. Very few people swear off driving after hearing of someone else injured in the course of this activity.
    It is interesting to imagine a world where risk was considered fairly. What would happen if we told auto makers they had to list the possible side effects of using their product at the end of each ad? For the right patients, it is a reasonable way to point out that we choose high risk behaviors for relatively low benefit. For example, many people who refuse to immunize their children will put them in the car to run to the store for some minor item (or even a product likely to have a negative health effect). From that doctor point of view it is hard to grasp accepting the risk of driving to go buy your cigarettes but not accepting the risk of immunization for the benefit of that activity.

  15. wertys says:

    This is a really excellent piece of clinical writing. As someone whose practice is in a new field which is replete with pseudoscience and anecdotalists, I think the analogy quoted above is spot on. I would also suggest that interested readers check out this link to an article in the BMJ on communicating risk to patients, which I have used ceaselessly since I read it.

  16. BlazingDragon says:


    How does one separate “psychosomatic” from “biological but really odd?” One way is to believe a patient when 4 classes of anti-depressants (one or two from each class) and benzodiazepines fail to “cure” the “psychosomatic” condition and start looking for biological causes. My experience (with one exception) has been for doctors to either a) give up, or b) insist that it is psychosomatic and it’s my damned fault for not responding properly to their prescriptions.

    This kind of rotten treatment pushes a lot of people into the waiting arms of CAM quacks who then “cure” them (the saddest part is often the patients don’t feel better (after the placebo effect wears off), but their practitioner tells them they are better and so they continue to believe it). A little bit of tenderness and a willingness to refer to specialists (who, in turn, need to take these people seriously) would put a stop to a lot of these cases and deprive CAM quacks of a decent supply of patients.

    I don’t know how to fix this issue, but having been a victim of it, it really makes me mad every time I think about people “falling through the cracks.” It may just be statistical noise in a study, but each one of those “noise” data points is a human being whose lives have been ruined, more often than not by callous and uncaring doctors who couldn’t be bothered to treat a patient until their symptoms became head-knockingly obvious, by which point the person’s quality of life is greatly diminished.

    I’m not alone in this treatment either… my father had increasing numbness and cold sensations in his lower legs, progressing to wobbly gait … ten years, several steroid injections, and a worthless surgery on his low back didn’t fix the problem (the problem had to be in his low back because he had no symptoms at all in his arms). They actually did surgery on a perfectly good lumbar vertebrae because “that’s where the problem had to be.” My mother-in-law runs a medical group and she hired a great neurosurgeon… a guy who really cares in addition to having magic hands. He looked at my dad and agreed that the problem wasn’t in his low back… then he asked a simple question: “Has anyone looked anywhere else in your spine?” The answer, as you can guess, was no. He had 50% compression in a cervical disc, that was missed for 10 years by a variety of “professionals” because you “can’t have cervical compression without having symptoms in the arms.” My father now has permanent disability and it was a problem that would have been friggin’ obvious for at least 5 years prior to when his surgery was done, if anyone had thought to check the rest of his damned spine in 10 friggin’ years.

    Yes, I’m mad about this. And all I get thrown back in my face is probabilities. I guess my mother, my dad, and I are all just “statistics” (my mother has a whole different set of odd issues that will likely kill her in the next few years (before age 70) and it’s all been written off as “psychosomatic” for 30 years). My mother’s sisters and mother all lived (or are living) well past 90, so dying at 70 would be really early for her family.

  17. David Gorski says:


    Actually, I have a post in mind about this very topic. It mainly has to do with vaccinations and how antivaccinationists tend to demand absolute safety in them.

    As for the comment above about how not to make a patient “feel like a number,” that’s a good point. It’s not always easy to do, either. I still struggle with how to accomplish that.

  18. Anon says:

    You say that physicians are “specifically trained not to think like normal people”, however you then go on to explain how a different point of view leads to different conclusions with exactly the same way of thinking.

    While there may be some benefits to “the view from on high”, it does have dangers that I don’t think physicians are well trained to cope with. When viewed from 10,000 feet I suspect that all patients look the same. While large patterns may emerge the individuals who break the pattern are easily ignored. This can be useful in some cases since it allows the physician to generalize about classes of patients, but it can be a real problem if you don’t fit the pattern. E.g. an elderly man I know who was given iron supplements because his physician decided that from “somewhere in the air” it looked like all old people needed iron. It took a year before the iron poisoning was diagnosed.

    The other side of the coin is that many physicians resist evidence based medicine. Some call it “cookbook medicine” precisely because it looks at patterns larger than they can see and is therefore impersonal. Again this is an indication that these physicians are thinking in exactly the same way as the patients you criticize. Even when the evidence clearly points to a problem many physicians reject the conclusion because they don’t see a problem in their “football field”. E.g. large studies of central line infection rates have clearly shown that it is possible reduce the infection rate to almost zero by following three basic steps (wear gloves and a mask, sterilize the insertion point, and change the catheter only when necessary), however a hospital where even 60% of physicians take these precautions is considered unusual. (A conservative estimate is that there are ~100k central line infections per year in the US, resulting in ~5k deaths and ~$50M in additional costs.)

  19. Apreche says:

    I am just a computer professional. My medical knowledge is limited to what I learn on the Internet from wonderful sites such as this. Yet, after reading this excellent post, I had a simple idea. I doubt I am the first person to have this idea, but I will share it in the interest of learning.

    What if we added an additional person to the process? Right now we have a doctor who figures out the problem, suggests a treatment (if any), then gives the treatment. This doctor is also the person that talks to the patient. What if discussing treatment options with the patient was its own job? You could have people who are specially trained in ethically convincing patients to take the best course of action recommended by the doctors.

    One of the major problems seems to be that the doctors just don’t have time to really sit and talk with the patients. I imagine that with all the mental power they put forth towards the science, there isn’t much left to put towards being an expert at dealing with patients feelings.

    Imagine if patients had advisors. The advisors would be attached to the patient. No matter where you were, or what kind of medical situation you were in, the advisor could facilitate communication between patients and doctors. The advisor would give the patient the personal attention and care that the doctors do not have time for. They would also know the patient very well, and would have a better chance of helping patients understand the right decision.


  20. Dr. Zuker’s mother’s problem was not her personal experience but her lack of personal experience. She had one friend Tee who exercised and look what happened to her!

    People who are not “health care practitioners” today, live in a sanitized world where they very rarely see people who are seriously ill and almost never see anyone die. Most never even see animals give birth or die and almost no one today sees a disease that is routinely treated go untreated and watch as the disease runs its course and kills the patient, something our ancestors experienced routinely back in the good old days when the only treatments available were what are called “alt medicine” today.

    For all I know there may even be lots of “health care practitioners” today who rarely see seriously ill patients because most are rushed to highly specialized institutions.

    The next most effective way of learning after personal experience is with stories because people like animals learn through their senses, something quacks know every well and use very effectively in selling snake oil.

    Evidence based medicine tells us what is best for the average person, or rather what will greatly increases the odds of the average person getting the best outcome, but there are lots of times when we ourselves and our loved ones aren’t the average guy. In the real word, that is something we have to accept and live and die with. In the real world, not the deluded one of alt. med., there isn’t any rational alternative, but in the real world where so few people have ever experienced anything horrible like a serious disease or death, a lot of people simply can’t face that and give money to people who promise to deliver what they cannot possibly deliver.

  21. irishwolf6789 says:

    Great article, and there’s a name for this phenomenon in psychology: “Vivid Cases.” There’s a lot of literature about this type of social phenomenon that is worth looking into.

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