Respectful Insolence

Impressive science failing to impress patients

One of the greatest challenges in medicine can sometimes be to convince a patient that the results of scientific and medical research apply to them, or, at the very least, to explain how such results apply. A couple of days ago, in an article the New York Times, Dr. Abigail Zuker, proposed one reason why this might be, beginning with a discussion with her mother in which she tries to convince her of the benefit of exercise, even in the elderly, a concept that her mother would have none of:

“Studies,” she says, dripping scorn. “Don’t give me studies. Look at Tee. Look at all the exercise she did. She never stopped exercising. Look what happened to her.”

End of discussion. Tee, her old friend and contemporary, took physical fitness seriously, and wound up bedbound in a nursing home, felled by osteoporosis and strokes, while my mother, who has not broken a sweat in the last 60 years, still totters around on ever-thinning pins. So much for exercise. So much for studies. So much for modern clinical medicine, based on the randomized allocation of treatment and placebo. All that beautiful science, stymied by the single, incontrovertible, inescapable image of Tee, the one who exercised but grew hunched and crippled anyway.

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.

It is true 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. 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 they smoked.
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. Usually, if you probe a little more closely, they will tell you the horrific tale of how the cancer ravaged this person after it recurred. They become convinced that it was because the deceased hadn’t undergone what they perceive as the more radical treatment of mastectomy that her cancer recurred. No amount of citing the nearly 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.

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 only has 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 early stage breast cancer, the benefit is usually between 3-4%. 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.

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.

Indeed. One way we in medicine can overcome this gap 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.

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 sometimes fall prey to this trap as well. If, for example, we see a treatment resulting in a bad outcome in two or three patients in a row, we are just as prone as anyone to react by changing our approach, even though we know from the literature that we are using the most efficacious treatment available and that the last couple of bad outcomes were almost certainly a statistical fluke. We often can’t see the “whole picture” either, and that is one reason why it is so important for physicians to stay current on the medical literature and to be willing to reach out to their colleagues for advice.

In the end, it’s 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.

Comments

  1. #1 Dave Munger
    February 24, 2006

    Fascinating post. You may be interested in a Cognitive Daily article which addresses some of these same issues: how you convince people of a scientific fact.

  2. #2 Alexander Whiteside
    February 24, 2006

    I think the trick is to realise that there aren’t too many certainties: there’s always some degree of chance involved. It’s intuitive to think that we’re choosing a specific outcome when we choose a course of action, but really we’re just choosing what odds we get. If you think of choosing a treatment as maximising your chances, then studies make more sense.

    Mind you, not many people have a real grasp of how statistics and probability work, which is a pity.

  3. #3 Mike
    February 24, 2006

    Very interesting post. It’s always fascinating to read how people relate to each other in stressful situations when they are coming from completely different places. Learning how to think critically (from the GoogleEarth view or the GroundLevel view) is a skill that is sorely lacking in so many people.

    We really should have mandatory courses in it.

  4. #4 Dad Of Cameron
    February 24, 2006

    “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”

    I’d like to take this a step further.
    Why are the untrained people so apparently impervious or oblivious to thinking? I think it possible that one of the core reasons is that it can be psychologically self-preserving to adopt the view of someone (or especially a group) who provides acceptance. Even if one only other person is only conveying annecdote, if someone untrained to think critically has no true knowledge of the subject material (especially if it’s scientific or medical), a quick buy-in affords the listener immediate acceptance and avoids feelings of inferiority. Unfortunately, it appears that critical thinking does not pervade the majority. The U.S. appears largely a nation of emotion vs. thougt. Short-term self and group acceptance prevail over the rewards of patience, discipline, and inherent mistakes of actually learning.

    Perhaps we need think about how to appeal to their emotions first. It’s not going to be easy for me, because I don’t “get” the whole actions and decision making based on emotion or belief, presented as fact.

  5. #5 natural cynic
    February 24, 2006

    Perhaps the way to think about these kinds of questions is to approach them in a different way. In the case of the unfortunate Ms Tee, one could say that perhaps she wouldn’t have lived as long if she hadn’t exercised.

    I think the case of the author Jim Fixx is a good case to present. He was one of the early advocates of distance running, but died of an MI at a relatively early age (45-50 IIRC). On the surface, not a good example, except that his family history was even worse – his father and brother died from heart disease in their early forties. Anecdotally then, running gave him several additional years.

  6. #6 Tom
    February 24, 2006

    My mother, sister, and I all have a genetic cancer syndrome with adult onset. Familial Adenomatous Polyposis. My mother had a partial colectomy. My sister had an ileoanal pouch procedure. I had a simple partial colectomy and I didn’t take the NSAIDs they did because they messed up how I felt and contributed to my hypertension.

    Since then, mom has had a hysterectomy due to fibroids, sister has had 2 additional FAP related procedures (both emergency due to the failure of the piouch once and a polyp in the wrong spot Upper GI the second time), and a survived bout with breast cancer, and I, the moron (and I know I’m dumb about this but poor), go in for a check up every 2 years or so and polyp removal and everything’s been fine with me. Anecdotal evidence is interesting. I wouldn’t recommend my path but so far I’ve been pretty lucky compared to the more invasive procedures my mom and sister have had. Sometimes it feels better to hold the cards you are dealt than ask for a new hand.

    Regards,
    Tom

  7. #7 ebohlman
    February 24, 2006

    The U.S. appears largely a nation of emotion vs. thougt. Short-term self and group acceptance prevail over the rewards of patience, discipline, and inherent mistakes of actually learning.

    I suspect a large part of it is that the US, more so than other Western countries, has a rich visual culture of advertising. Our media, with a few exceptions, have all been about selling since the very beginning. Thus the majority of the messages Americans receive from strangers, aside those received in formal schooling, are messages intended to persuade rather than simply inform. Consequently, we tend to perceive messages coming from outside our immediate social milieux as either attempts to sell us something (to which we can respond that we aren’t interested in buying) or to boss us around (to which we can respond “who gave you the right?” if there isn’t an actual authority relationship). Messages that aren’t perceived as either get regarded as part of the background noise and tuned out.

    A related factor is that the number of messages we receive daily has been going way way up. There’s no possible way we can rationally examine each one; we simply don’t have the time. Thus we have to use various heuristics as preliminary filters in order to decide what’s worthy of our attention. And unfortunately (and this appears to be a matter of brain wiring) those heuristics are biased toward those messengers who a) shout the loudest and b) seem the most certain of themselves. Defeating those heuristics is hard work and most people, quite understandably, won’t put in the effort unless they can see some benefit to themselves from it.

    The upshot of all this is that if you want to deliver a factual message, you absolutely have to sell it, regardless of how distasteful you might find that effort. Facts simply don’t “speak for themselves” (that’s got to be one of the silliest figures of speech ever). If you don’t, you’ll be perceived as arrogant and snobbish at worst, or irrelevant at best. You can’t adopt the manner of the stereotypical professor who resents the fact that his students don’t already know the subject he’s teaching.

  8. #8 Tom
    February 24, 2006

    Oh. For the record….Dad is a MD MPH Pathologist and Mom is a RN/MSN and they disagree with my pursuit for minimalist/non-invasive as much as possible treatment, but clinically have a hard time finding fault with it.

  9. #9 SkookumPlanet
    February 24, 2006

    DadOfCameron…

    You’ve hit the nail on the head in your last paragraph. I posted at length last Monday on a PZ topic here. I thought I could catch the tail end of the Flock of Dodos/Olson discussions, to which the post is germane. Learning how to “appeal to emotion” as an individual can be very difficult, but at a mass audience level science knows a hell of a lot and it’s being very effectively applied in real life. Unfortunately, only by the bad guys.

    There’s great resistance [one might argue emotional, not rational, resistance] to accepting how political and social decision making is happening in the U.S. these days, and will be for decades, many decades. It’s especially frustrating to see scientists behaving this way — armchair, even semi-ignorant, analysis and proposals for solutions. The best explanation for this I can come up with is that the reality of how this is being done, how voters and consumers etc go about decision making, and how unconscious it is, is so counter to [and, frankly, demoralizing] how scientists behave and succeed, that they can’t accept it properly enough to allow them to approach it scientifically. The answers are out there. Mooney and Nisbet have been blogging about this recently, but in a fairly general way.

    I would make the argument that we’ve evolved as fundamentally emotional decision makers, not rational ones. And even the most rational, evidence-driven of us should assume we’ve got some emotional decision making we’re in denial about. Nobody wants to believe they make important, unconscious emotional decisions. But, science tells us otherwise.

    later ebohlman posted…

    You’ve also hit that nail and really whacked it. You’ve understated a couple things [the overwhelming majority of messages are persuasive versus informative and, depending on what one counts, the average American “processes” several thousand ads a day — ads being professionally produced persuasion messages], but everything in your post is correct.

    You’ve missed one crucial item, however. There’s been large amounts of money put into basic research in several fields over decades to better understand how humans process information. There’s been, and continues to be, progress and it’s being increasingly applied by the “persuasion industry” with increasing success and understanding. It seems to me that these applications tend to very metrics oriented, so they get better at it.

    The result is that, by necessity, the persuaders are getting into people’s minds unconsciously in very sophisticated ways. And that is designed to by-pass the conscious gate-keeper. In other words, people don’t have the option of accepting or rejecting messages because they have no way of knowing they’re being subtly influenced. It’s all science. And it works even when people “tune it out”.

    I’ll mention George Lakoff as someone who has applied his field [linguistics] to the political arena and is attempting to communicate with the non-radical-right public. I’m reluctant to do that, however, because most of the reactions to him I’ve seen by that public shows they misunderstand him.

    The radical right has, over a couple decades and very slowly, manufactured a social/political environment conducive to their tactical success — think of it as very long-term agenda setting by shaping a public’s collective unconscious mind. The results speak for themselves.

    The distaste for “selling” you’ve correctly identified, especially on the part of smart, analytical, politically-oriented people is so naive and so counterproductive that I’ve had to conclude it’s the result of a fundamental, unexamined emotional response to reality. It’s preventing successful approaches to many emerging political issues. The data is there, the applications are there, the results are there, the analysis of it all is there, yet it’s being ignored by virtually everyone outside the upper-echelon strategists of the radical right.

    Average Americans, outside their “immediate social milieu”, exist in a virtually 100% designed and manipulated environment. Thinking, or rather believing, that facts or information or education or, we’ve learned recently, even reality are adequate to counter this new reality is highly irrational. It’s all water under the bridge. This genie is out of the bottle permanently. The apparently widespread belief that things can be changed without getting immersed in the persuasion game are doomed, doomed, doomed.

  10. #10 Hank Barnes
    February 24, 2006

    Most people operate by way of placebo therapy. If you are impressed with a tall, highly-educated, eloquent man in a white smock, you will feel better about doing X, if he tells you to do X.

    On the other hand, if you are intimidated by an arrogant, know-it-all, technologically cold physician, and tempermentally would feel more at ease accepting a tofu, bean-sprout colon cleanse, from an aging hippie at the local organic farm, you’ll migrate towards that.

    Placebo effect confounds most treatment.

    Hank B.

  11. #11 Greg P
    February 24, 2006

    I think there are two things to be said here:

    1. You cannot go after someone, all scientific guns blazing, and expect that the power of the science will win. People are smart enough to know that everything is relative, and that science doesn’t have all the answers. Some of the things that some doctors get excited about advocating to all their patients on balance may only make a small difference even in a large population.

    2. Any discussion of what can be done, should be done in consideration of improving quality of life or longevity have to be just that, a discussion, a two-way conversation, in which both sides talk, both sides listen. When you present what seems like a perfectly logical argument for some lifestyle change and you get nothing but negative feedback, you have to realize this is not going to be about the science.

  12. #12 ebohlman
    February 25, 2006

    SkookumPlanet: Many of the points you mentioned were ones that I had considered bringing up, but dropped because I was already rambling enough (ok, ok, because I was lazy). The main reason the political Right has triumphed over the political Left in the US is that the latter has acted as if its ideas are so self-evidently correct that they don’t need to promote them. The Left has, for the most part, reacted to this with whining and snobbery, treating the American public as a bunch of philistines. Last time I checked, whether someone preferred to watch a NASCAR race vs. a ballet performance was purely a matter of taste rather than politics, and I think the Right’s strategists know it and the Left’s don’t. Is it really any wonder that the Right has been able to persuade a whole lot of people to vote against their own interests? In certain areas, it’s really been the Left who have been taking the “either you’re with us or against us” stance. “If you don’t understand our message, you must not be very smart” may be a way to feel hip and trendy. It sure as hell isn’t a way to bring people over to your way of thinking.

    I’m looking forward to the new Armstrong/Moulitsas book, of which I’ve seen excerpts; it seems to be saying a lot of what we’re saying (I especially liked the critique of how progressive organizations seem to expect their employees to take vows of poverty, with the result that they’re dominated by inexperienced straight-out-of-college idealists, trust-fund kids, and single-issue zealots, while right-wing organizations offer their employees something resembling careers and thereby get more effective staffs).

  13. #13 impatientpatient
    February 25, 2006

    Maybe the real failure here is the failure of imagination. Maybe doctors cannot truly imagine what it is like in another person’s body, living with their life experiences, their socio-economic reality, their history, etc…???

    From what I have read, empathy is being taught in medical schools these days. I think my son said it most elequently when he called something similar as “pretending to give a sh#$. ” Can you really be taught or untaught to care? Does medical school and medical practice harden doctors to their patients realities? Is the question either you care or you don’t?

    Some patients are easier to care about- a cuteness factor, a link or reminder to someone in their own lives, a gut feeling. I don’t know. Sometimes doctors do treat patients as the “primary sclerosing cholangits” in the next room, or the “radical masectomy” at 12:45.

    Sometimes patients are just damned difficult. They have been told dammit that quitting smoking will kill them, or not complying with treatment will affect their disease outcome. Some have conflicting reports from experts that cause them to “lose faith” in what medicine has to offer and lose sight of what truly is or is not possible. Some insist on doing things their own way, and mucking things up.

    Sometimes diseases are insiduously chronic and affect every aspect of the individual’s lives. Rather than treating the problem, patients are psychologically invaded by those who would believe that the mind affects the body but disavow that the body can affect the mind.

    And sometimes the status quo is good enough. Homeostasis, equilibrium, whatever the proper word is allows that the person’s body is not being stressed by something unfamiliar, and therefore lasts longer.

    I don’t know, but I do think that patients and doctors move in two different worlds- the practical and the theoretical, and until something bridges those – emotion, caring empathy- whatever you want to call it- there will always be conflicts between what is and what should be done in a patients life.

  14. #14 Peggy
    February 26, 2006

    What is being overlooked here is that the public has been getting conflicting messages about what is healthy and what is not for a long time, and that breeds skepticism. As an example, recently there has been media attention to several studies, not all of them recent ones, indicating low-fat diets don’t do what doctors have promised, yet apparently doctors will go on prescribing low-fat diets as a necessary preventative, regardless.

    Thinking people understand that science is a work in progress (It’s entirely possible that more of the public is capable of thinking that the comments here suggest). Doctors are no longer considered gods dispensing absolute wisdom, and shouldn’t expect patients to accept their advise without questioning it.

  15. #15 Phoebe
    March 2, 2006

    This is tangential to your main point, but as a breast cancer patient who eventually opted for mastectomy over breast conserving surgery (that is, I was talked into the latter on the first round, but the path report came back showing less than clear margins, so I had a second go at it), I think you’re missing at least one set of considerations that goes into the decision.

    I understood perfectly well that the survival rate was the same with breast conserving surgery as with mastectomy. I also understood the varying local recurrence statistics. And look: long term survival rate isn’t everything. Quality of life, and potential tiresome interruptions like having to be re-treated, do matter. Particularly if you’ve got what people are calling an aggressive tumor, and your oncology team is already talking about chemo and such, you may reasonably conclude that the difference between an 8 percent chance of having to do this all over again and a 1 percent chance is more than enough to justify getting rid of the offending body part and having done with it. The odds of survival are the same either way, but the odds of happy, comfortable survival may not be.

    It’s not always an inability to believe in science, honestly it’s not. Particularly since mastectomy is not exactly a fate worse than death, and there are moments when chemo feels like it is.

  16. #16 Katy
    October 13, 2006

    Very informative and wonderfully entertaining blog-

    Thank you !

The site is currently under maintenance and will be back shortly. New comments have been disabled during this time, please check back soon.