Monday, October 18, 2010

Paternalism of "science-based" medicine

This is a post I did originally for BMJ's doc2doc site. I am cross-posting it here for your convenience.

Lately I find myself getting more and more incensed with colleagues who seem to preach science-based medicine as the be-all and end-all in the truth about everything. I have blogged about this many times, and some of the references I make below are expanded upon in some of my recent posts. 

The argument goes like this: We who practice science-based medicine are the only ones that are correct in our approach because everything we do comes from a scientifically derived pool of evidence. Anything else is quackery, also referred to as "woo", which includes all modalities that do not fall in line with this EBM paradigm. They rail equally against healing crystal charlatanism, acupuncture, Reiki, and "anti-vaxers", lumping them all into the ignorant masses that dare go against what we "know" at their own and societal peril. They maintain that there is not room for anything in healthcare other than the "proven" scientific interventions.

So, if they advocate for science as the prevailing force in medicine, why should I, a firm believer in evidence as the backbone of healthcare, object? Well, here are some of my reasons, and let's see where you stand.

First of all, it is my belief that all interventions should be approached with equanimity, if not equipoise. Although I am quite dubious that either healing crystals or Reiki can produce actual results, I do not want to confuse the absence of any evidence to this effect with the evidence of absence of the effect. Although I am not that interested in allocating resources to studying these fields, it would be paternalistic of me to bar their further investigation. So the society can decide what it wants to do with them, and in the meantime every individual can make her/his own choice whether to spend their money on them. Interventions in the broad area of traditional Chinese medicine (TCM), including herbs and acupuncture, elicit less visceral aversion in me, and may be shown down the road to have desired health effects, though their study may not be amenable to our current methodologies. Again, at this time, if an individual wants to try them out, they should be keenly aware of how little we explicitly understand about them, including both their risks and potential benefits. 

The vaccine debate is yet another completely different issue altogether. In our privileged society the specter of infectious epidemics is for the most part but a distant memory, yet our concerns for the safety of our children combined with a rampant, albeit not altogether unjustified, distrust of the pharmaceutical industry and the government, have colluded to promote a biased yet durable suite of misinformation about the risk-benefit profile of vaccinations. Some of this prevailing sentiment may be because, in my opinion, we have focused on the wrong outcomes (e.g., the economics rather than morbidity associated with chicken pox), or that we have overstated what we really know and understand, at the risk of sounding too confident and therefore not trustworthy partners in this important area of public health. But these are just my own speculations. What is more important is what we do know about "science-based" medicine.

The uncomfortable truth about clinical science is that by its nature it is inexact. If it were precise, we would be able to describe it through simple mathematics without resorting to statistics, where the wild card is probability of an event. Relying on statistics is wise to understand what happens in large groups of subjects; it is altogether a mistake to take this information for God's own truth for any individual. As I have explained before, statistics are akin to that joke about assuming a spherical cow in order to help a farmer with his milk production quandary. The assumptions of normality, the dark art of log transformations, the cramming of a binary individual into a continuous distribution of population probabilities are all part and parcel of how we develop our understanding in the clinical sciences. No wonder when we bring this knowledge to the bedside a lot of the time it does not seem to apply to the specimen before us, and we are faced with having to use our judgment much more than the science-based medicine mavens are willing to admit. I often wonder how a 2-week prolongation in median survival in a cancer population, even if statistically distinguishable from the much-maligned placebo effect, is in practical terms all that useful. Yet these are effect sizes that we often see in science-based medicine.

My intent is not to belittle what clinical science has and continues to bring to the society. After all, thanks to it, we have a much better understanding of many illnesses now, and we can even take credit for effecting better outcomes for many a sick individual. At the same time we really need to sow humbleness in place of arrogance in all the places where the latter runs rampant. Philosophers of science have understood for decades that there really is no universal truth, and everything we think we know we understand through the prism of our collective human and individual experience. So, instead of wasting time on throwing boulders at our competition, why not take a closer look at the material that our house is made of. Dropping our inveterate paternalism in favor of being truthful about the degree of our uncertainty may make us look more human and fallible, yes. At the same time, it may show our patients and the public at large that we are on the same side. Though this is a risk, it is a necessary one to repair our rapidly crumbling therapeutic relationship. Admitting to not knowing is not only not a weakness, it is the only way to scientific progress.              


  1. Very well put. The terms I've used for this limited view of science-based medicine are "academic fundamentalism" and the "dogma trap". As individuals who care about the quality of evidence utilized to make decisions for patients I agree that it is dangerous to allow this pursuit to degenerate into a paternalistic refutation of anything not deemed "worthy" of scholarly consideration.

    In part this attitude may also explain the rampant skepticsm for medical researchers. I would hope that we're not looked upon as another interest group with an ax to grind.

    Clearly, what is needed as you properly state is humility in the face of uncertainty and limited evidence.

    Thanks for posting.

  2. Yes! Yes! Yes! This expresses *exactly* how I think about it.

  3. Thanks for your comment, Chukwuma! I really like "academic fundamentalism" moniker, it surely fits. I often refer to this attitude as religious faith in EBM. That kind of dogmatism in not just unhealthy, it is insulting to everyone's intelligence.

  4. Dale, happy to hear that there is deeper understanding of the scientific method out there than just the chest-beating hubris.

  5. Marya,
    I think we're on the same page in viewing the need for science-based medicine but also understanding some of the shortcomings of the methodologies and levels of evidence in the existing practice of allopathic medicine. I especially like your point about the importance of not confusing "the absence of any evidence of effect" with the "evidence of absence of effect".

    I'll come back to the point I often make. We need better statistical literacy among doctors and patients. It's a lofty goal to try to educate the entire population about medical science and statistics, but we can at least try to improve the medical and statistical literacy of health journalists and other healthcare communications specialists. Still, I think we need to focus a lot more attention on providing better access to clinical research data and results to patients/consumers and provide better educational tools to help non-scientists understand research results.

    Thanks for the post and for the kind words on my comments on the site (thank you, too, Chukwuma!).

  6. Janice, thanks so much for visiting and commenting. I agree that we need to increase science literacy in this area for both providers and patients. My only concern here is that we are so constantly in search of certainty, that this may be a rather disturbing process for many. Yet necessary.

  7. Marya,yes I share your concern that the desire for easy certain answers -- and the willingness of some to pretend that they can offer those certain answers -- will complicate educational efforts to teach probability, statistics and critical thinking.

    In fact, I think the disturbing move toward a fundamentalist mindset may be in reaction to the increasing complexity that individuals are asked to deal with in daily life. Already we're supposed to be financial experts to manage our retirement accounts and investment decisions; tax experts to navigate a labyrinth-like tax code; and now medical experts with statistical literacy to make informed health decisions and health insurance purchases. Oh, and we need to be our own IT experts to manage all of the devices that we use to simplify our lives.

    My goodness, I sound like a Luddite! I'm not, but I think we--as a society--need to put more thought into how to help a broad range of citizens deal with the the rapidly increasing body of knowledge we're accumulating.

  8. Janice, I think you are right -- it is the nexus of the escalating complexity and the idea that everything has only one right answer, thanks to how we have chosen to set up our educational institutions.

  9. I have another perspective. I don’t see the preachy absolutism that you’re seeing in science-based medicine. Sure, there’s a few individuals with an objectionable rhetorical style, but no group of humans is immune that accusation. I find most SBM proponents to be delightfully rational and reasonable. In fact, it’s generally been a huge relief for me to get involved in SBM. It feels like a lovely and sensible community of really bright people.

  10. Paul, thank you! Great to hear a different perspective on this. Makes me hopeful that it is once again simply the vocal minority that is hijacking the agenda. I do still believe that we need to guard against arrogance.

  11. Your mastery of words is meaningful to many who seek to understand clinical information. The chicken pox comment alone is worth a lot. I've seen many parents who were bulleyed about the importance of the cp immunization by a school nurse or pediatrician. It's the law in Ohio that you can't start kindergarten without the cp shot. A sad misuse of our power generates a misuse of legislative power and people feel betrayed, leading to loss of trust in physicians.
    Your blog will de-fog a lot about clinical decisions. Thanks.

  12. Thanks for your comment, Patrick! Many if not most states require varicella for school -- agree that it is misuse of power breeding mistrust.

  13. Thank you for saying this! I am a mom of a 3 year old who reads many of the science based blogs. I am repulsed at how these "science" bloggers absolutely demonize parents who dare to question the safety of vaccines. Their dogmatism makes me question the true motive of the argument. Thank you again for posting this.

  14. I find the comments here about vaccination from Drs Zilberberg and "Synonymous" quite alarming.

    My daughter just brought home a letter from school which asks parents to be "vigilant" about not sending their kids to school with spots. The reason is that there is a little boy in the school who is having treatment for leukaemia and is consequently immuno-suppressed.

    Unfortunately, non-vaccination is pretty common among the middle class parents of my middle class enclave. And given that kids with varicella will be infectious days before the spots appear, keeping spotty kids out of school is locking the door after the horse has bolted.

    From Marya and Dr Synonymous' words I assume they think it is perfectly reasonable for this poor kid to be put at risk so that other parents can feel smug about exercising their "choice" about vaccinations. I wonder if I am alone in thinking their words will be music to the ears of anti-vaccine campaigners?

    Would either Marya or Dr S like to comment on what is likely to happen to this poor boy if he gets chicken pox?

    From where I am standing it seems like the legislators in Ohio have a point.

  15. Dr. Aust,

    Maybe you have let your emotions get the best of you before you had evidence in your hand.

    You post here that a little boy is being treated for cancer AND he is immunosuppressed.

    Later on REspectful Insolence you posted that you received a letter from your daughter's school "probably because there is a kid in the school under cancer treatment."

    It's seems that you conjured up a scenario that angered you and filled in the conclusions yourself. This is not what EBM is about.

  16. Randall, at the risk of picking nits and going way off topic, Dr Aust's two posts don't contradict one another. Take the above post: "The reason is that there is a little boy in the school who is having treatment for leukaemia and is consequently immuno-suppressed."
    Then take the Respectful Insolence comment: We just had a letter from our daughter's school about "don't send kids to school with spots", probably because there is a kid in the school under cancer treatment.
    In other words, the first post states a series of facts. The second draws an inference, that is, that the letter asking that kids with spots aren't sent to school is most likely due to the presence of an immuno suppressed child. It may not be: the two events may be entirely unrelated. But it is PROBABLY due to the presence of an immune suppressed kid. I'd say that was drawing conclusions based on available evidence.

    Back at the point, I think there is valid discussion to be had regarding Dr Aust's point. What this article says, in effect, is "the choice not to vaccinate is as valid as the choice to vaccinate - and if you're the kid who needs herd immunity, then tough. Better start hoping there's no measles here because my right to make ridiculous decisions supersedes your right to protection from a vaccinated herd."

  17. Yes Dr. Aust, it seems you just made up a story about the kid with leukemia. Here is exactly what you said on Respectful Insolence:

    Her comments on vaccination, and those of a "Dr Synonymous" on her blog, made me quite angry. We just had a letter from our daughter's school about "don't send kids to school with spots", probably because there is a kid in the school under cancer treatment.

    Stuff like that tends to make you see requiring things like varicella vaccination for school/kindergarten in a different light.

    I've left a comment on her blog (in moderation). Assuming it gets posted, will be interested to see what she says in response.

    Posted by: Dr Aust | October 25, 2010 11:51 AM

  18. Quick editorial note, Dr. Zoidberg, if I may? An "effect" is a noun, and "to affect" is a verb. "Effecting" something is not really a word. From one health blogger to the other.

  19. Treatment for cancer inherently suppresses the immune system. It is an extremely common and anticipated effect. So Dr. Aust's comments are not indicative of anything other than using interchangeable terms/ideas interchangeably.

    I will also second his anger since this demonstrates clearly that the best "tool" the anti-vaxers have is inherently a failure. It is oft claimed that sequestration "breaks the link of infection" and that it is just as a effective or at least better than vaccination for prevention of diseases. However, they all seem to miss the point that most infection have infectious prodromal phases and even the most conscientious and vigilant parents/administrators cannot possibly quarantine such a child before the infection has spread to anyone else - especially the immunocompromised child.

  20. @randall

    Nope. Scenario is accurate. The school's letter mentioned "children with health problems". I happen to know there is a kid in the school who has had extensive (ongoing) therapy for leukaemia because he lives a couple of streets from us. I assume the school is deliberately non-specific in the letter, as no-one wants to single out a child publicly. But it is not a big leap to conclude they are likely talking about him.

    It is not a terribly "weird" scenario, anyway. It is hardly a big secret that herd immunity - the thing mass vaccination programmes are designed to produce - is needed largely to protect the people who can't be vaccinated (e.g. because of immunosuppression or other immune system problems), or are too young to have been vaccinated, or somehow missed the disease when young but are now middle aged etc etc.

  21. While I understand that pointing out that draust went from writing 'probably' has cancer on a different blog to writing that the child does have cancer here is entertaining, I would like to point out that such discrediting does not answer the questions he/she brought to the discussion.
    What would happen to a child who catches chicken pox while being treated for cancer? How
    do we (all persons) choose one child's wellbeing over anothers?

    At what point should individual choice be restricted? Where is the line to be between one person's choice and another's right to be safe?

  22. Boom!

  23. Thanks to everyone for taking the time to comment. As I said in the comments to today's post, I fully plan to consider all of Dr. Novella's criticisms and do several posts in the near future to follow up. As I am stuck in an all-day meeting, I will be unable to respond to every comment until later, but please bear with me. I do believe that it is conversations like these that will help us further the discussion.

    @Ren: "To effect" means "to bring about".

  24. Ren, the word "effecting" was used perfectly correctly. The verb "to effect" is to make something happen as in "effect a change".

    On the subject of the blog, I'm with SBM, as many of the CAM modalities mentioned have been shown beyond all reasonable doubt to be ineffective. I have been shocked at the outright lies spread by the anti-vaccination community.

  25. I'm quite gobsmacked at the idea that demanding evidence in proportion to a claim is "paternalistic."

    You can't actually mean "all interventions should be approached with equanimity, if not equipoise." What is the point of doing science if it doesn't actually teach us something? If decades of bench research have determined with reasonable certainty that structures formed in liquid water last only in the femtsosecond timescale or that quartz crystals have no perceptible energy field capable of interacting with cells in any meaningful way, why should we treat homeopathy or crystal healing with equipoise?

    In fact, I'd wager a substantial amount that if Pfizer or Merck were to market treatments that not only lacked RCT success but also had serious failings in bench-science-based prior plausibility, you wouldn't be so blasé about the necessity of some sort of hierarchy of knowledge. Your argument here really isn't about 'equanimity & equipoise for all interventions' but 'don't be so harsh on stuff I don't find to be viscerally aversive'.

  26. Oooh, thanks @Ren - my favorite kind of poster. Someone who thoughtfully "corrects" someone else's writing while have little clue as to correct grammar him/herself. Reminds me of the time I was "corrected" for writing "toe the line" by some dolt claiming there was no such phrase and I must have meant "tow the line."

    What I don't understand is this: why didn't you even take the time look "effect" up in a dictionary first to make sure it really wasn't a verb as well as a noun? You really need to effect a change in your posting habits!

  27. A very enjoyable set of comments by very passionate people. I applaud Ohio for all the legislated vaccine mandates except the chicken pox, about which I agree with Dr Z as she previously posted on chicken pox (a whole blog post).
    Strategies for immuno-compromised children when exposed to vaccine preventable diseases are included in the NHS Green Book about vaccines. Dr. Z expands her perspective on the cpox and such at risk children on her "clarification" blog post 10/25.

  28. Well. I really feel like an outlier with my thoughts. I came to this piece from a 'ScienceBlog' piece purporting to rip your essay apart.
    If one thing stands out it is that politics and agenda drive the profit machine of commercialized medicine's reliance on manufactured and therefore modified products. Poisons and toxins are not really perverted descriptions of such as heating alone can destroy long chain molecules, let alone more exotic 'processing' than the use of binding agents and concentrates.
    The 'paternalism' of which you speak is an excellent description of the 'voice' of Framing Arguments : techniques to change our concept of what is reasonable rather than rebuttal based argumentation.
    I tend to blog politics and news...and the phenomenon is relevant advertising poisoning discussion. For a dip into a wild and woolly world - I make no representation to moderation -
    The particular approach I would use describing what is going on vis-a-vis your article would be 'Appeal to Authority' ( Science ) and Moving the Overton Window.

  29. Laurie Meservy said... "While I understand that pointing out that draust went from writing 'probably' has cancer on a different blog to writing that the child does have cancer here is entertaining,"
    NO, he went from a child has cancer to 'probably' has cancer. It's as if he bluffed to one crowd and then went and bragged about it to another. It shows that he never was sure. He assumed it must be. But he felt the need to be more 'honest' to his friendly crowd. It shows the intention of deceit.

  30. * sigh*

    Trying to discredit the messenger because you don't want to tackle the substantive point is a wearyingly familiar tactic of anti-vaccine and other "Alternative Reality" folk.

    In case anyone cares, I added a clarifying comment above. Sadly, the kid in question definitely has leukaemia. The "probably" was actually referring to the inference about why the school sent out the letter, as Sarah J correctly noted (also above).

    However, the Alt.Reality gang routinely accuse opponents and critics of deceit, or of being "Pharma Shills", or of being part of some sinister organised group - you get this again and again if you puncture their bubble. I suspect they also default to such jibes so readily because it chimes with their own conspiracy fantasies and paranoia. For a look at this kind of tendency in its florid state one only has to take a quick look at a site like Age of Autism.

  31. "(e.g., the economics rather than morbidity associated with chicken pox)"
    Of course chicken pox is only the first round, later in life you get to deal with shingles, it can leave you with lots of pain and impaired vision. Having seen a few of my friends go through this I have had my shingles shot - unfortunately only 50% effective. Now if only I could have had a chicken pox shot when I was a kid instead of chicken pox.

  32. The 'anonymous' above, attacking Dr Aust is over-reaching, failing to understand simple english, and embarrasing themselves.

    It was quite clear from context that the 'probably' referred to the probable link between the child with cancer and the letter being sent out, not whether the child actually had cancer.
    If you weren't quite clearly gunning for Draust then you'd have been able to understand that. Unless you're really thick.

    As for the article: so what's your argument here? We can trust medicine that SBM tells us is inneffective or harmful? Or we can measure outcomes with non-scientific methods?
    Sounds like a load of nonsense. Treatments either work or they don't, only SBM can tell us with any hope at accuracy...

  33. I wish I'd had a chicken pox shot as a kid, instead of getting chicken pox (which left me hospitalized due to severe dehydration because my mouth and throat were so filled with sores that eating or drinking was agony).

    And I wish the pnemonia shot was available when I was a kid, so I wouldn't have gotten pneumonia and ended up in hospital on oxygen.

    And if they had shots to prevent ear and throat infections like strep, I would take those over the three years of near-constant antibiotic treatment I required because every time they tried to let a bug run its course, my fever would shoot through the roof and I'd start having febrile seizures. I'd especially like to have prevented the coordination issues that may be the result of these early illnesses.

    I wish my parents had gotten me the flu shot each year, rather than let me catch the flu and end up in the ER with a life-threatening asthma exacerbation each year for the first seven years of my life. Because poking your father on the cheek because you're too weak to shake him awake and you can't get enough air to call for help - that's all fun and game. There's no real harm in the flu. It's just the flu, right?

    Just sayin'. Compared to the alternative, vaccines aren't that bad - and this is coming from a needlephobe!

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