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Double-Talk And Paternalism

One of the more frustrating things about practitioners who promote unsafe and scientifically discredited medical practices is their tendency to change their message for different audiences. One day they’ll tell you that they espouse only evidence-based practices and the next they’ll be promoting snake oil. This double talk is hard to combat, since to disprove them one would essentially have to provide a video of their contradictory remarks.

One day I participated in a series of business meetings with a CAM practitioner in attendance (he was an MD who graduated from UCSF). During one meeting he boldly proclaimed his support of scientifically rigorous research, and praised the Cochrane Collaborative’s efforts to provide systematic reviews of the evidence (or lack thereof) for various practices.

Several hours later we were sitting together in another meeting in which I objected to the publication of a consumer article that would assist parents of children with autism in finding a DAN! practitioner who could provide chelation therapy to their children. I explained that there was no evidence for the efficacy of such treatments, and plenty of evidence for their harm (including the death of at least one child that I’d read about in the news). I suggested that an article describing these dangers might be in order, but that an article encouraging chelation use for autism was simply unethical and I would not allow it to be published.

Instead of agreeing with me, the CAM MD suggested that I was being “narrow” and that I should allow consumers to “explore all their options.” I was stunned. This was the same person who had just said that he fully supported scientific inquiry. So I asked him how he could say that he supported evidence-based medicine, and then turn around and ignore evidence at will – even at the peril of human life.

His response dumbfounded me:

“I am just as comfortable practicing within an evidence-based framework as I am outside it.”

Which sounded a lot to me like, “I’m just as comfortable lying as I am telling the truth.”

Even more flabbergasting was the perception of the others in our meetings. Having no medical training or science background, they perceived our disagreements as “two nice doctors who don’t get along.” Of course, Dr. CAM fanned this perception and encouraged them to see me as “paternalistic” while he was “open-minded.” All the while I was trying to protect parents from harming their children based on information that might seem credible in the context of a reputable online health site.

Of course, the old adage “perception is nine tenths of reality” was no clearer to me than during this day of meetings. In the face of what most healthcare professionals would see as an outright violation of Dr. CAM’s Hippocratic oath, to the untrained eye this was a mere disagreement between doctors. One seemed pretty upset and intense (me) and the other seemed cool and breezy (CAM). Which is the more appealing demeanor?

If a hospitalized patient’s life is in danger, I’d like to think that their doctor would be intensely interested in intervening. A shruggie attitude in that context would rightly be perceived as uncaring and irresponsible. However, change the setting from hospital to decision-support tool, and suddenly the acuity is lost on the audience. Unfortunately, the acuity remains – as patients use the Internet as a resource for “informed decision-making” all the time.

I’m not sure what it will take to impress upon healthcare professionals and patients alike the importance of reliable information online. The problem is that the damage is harder to quantify and rarely reported. Who will measure the effects of bad information on health? Who can know which false advice is used versus ignored?

A recent Pew Foundation study suggests that 70% of those who seek health information online say that it influences how they treat a condition. About 18% say they use the information to diagnose or treat a condition without a doctor’s consultation. An interesting website (created by a concerned patient named Tim Farley) actually aggregates a large number of journal article reports, news stories, and personal anecdotes related to harm experienced by patients who were either misinformed or chose alternative medicine therapies to their detriment.  The stories are both tragic and eye-opening.

Tracing patient choices back to the online site or page that gave them the idea in the first place may be hard to do. But I think that healthcare professionals owe it to patients to protect them from obviously harmful advice when it is in their power to do so. I don’t agree with Dr. CAM that such an approach is paternalistic.  I think it’s part of being a caring professional and a good physician.

Posted in: General, Public Health, Science and Medicine

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19 thoughts on “Double-Talk And Paternalism

  1. sowellfan says:

    I’m not sure what to do about the bad information on the ‘net, but fortunately, there’s a wealth of good information as well. Just this February, in fact, the internet helped us counteract some really strange advice that my wife was getting from a hematologist.

    Briefly, my 34 y.o. wife had some elevated iron levels some time after her hysterectomy (b/c of endometriosis), and her PCP sent her to consult with a hematologist. Tests ensued (various blood + genetic) and they determined that she had hereditary hemochromatosis. Since she’s young, though, the levels were quite low. I read up on the ‘net, and *everything* says the gold standard treatment is phlebotomy. This is the CDC, sites devoted to the disorder, other medical sites, *everything*. And they say that while chelation drugs can also treat this, they’re less effective, more expensive, have more side effects, and, in the case of the IV chelation drug, take more time. So after we get the diagnosis, we start discussing treatment with the doc – and he just *totally* dismissed phlebotomy, and started talking about how my wife needs to get these pills, etc. This conversation lasted over a couple appointments while my wife was getting other genetic testing done, but in the end, the doctor just *really* wanted to do chelation by pill. So, we went to a 2nd hematologist, and of course he said that phlebotomy was what he’d recommend (after checking charts & tests & such, of course). I asked if there was, perhaps, some ongoing debate inside the profession regarding these two options, but was told there wasn’t. So, in the end, I think good advice won out, and bad advice was (in part) defeated by the finding of good information on the ‘net.

    Now, my question is: Should we go to my wife’s PCP (and/or the cancer practice that the 1st hematologist works for) and explain this strange course of action recommended by the 1st hematologist? In my wife’s case, no harm was done – and likely wouldn’t have been done if she’d taken his advice (only financial, I suppose). But where there’s one piece of crap-based medicine, I’m afraid that there are likely to be others – and I’m concerned that somebody could get hurt.

    Also, do you folks think there’d be any point in establishing a *list* of doctors who sign on to science based medicine? And perhaps they could get kicked off if there are credible reports that they’re using CAM?

  2. Mojo says:

    His response dumbfounded me:

    “I am just as comfortable practicing within an evidence-based framework as I am outside it.”

    The introduction of the word “framework” is just the old postmodernist trick of pretending that all narratives are equally valid, and the “evidence-based framework” is just one of them. Essentially an excuse for ignoring the evidence if it suits him.

  3. Dr Benway says:

    Thanks for this, Val.

    Of all those we serve, autistic children are among the most vulnerable and the least able to advocate for themselves. They should not be subjected to experimental treatments outside of registered clinical trials.

    If this isn’t immediately obvious to any MD, our profession has lost its way.

  4. Dr Benway says:

    Dr. Val,

    Ballpark idea of the year Dr. UCSF graduated med school?

    I’m wondering if the Osher Center has legitimized ideas that once were viewed as non-standard.

  5. David Gorski says:

    “I am just as comfortable practicing within an evidence-based framework as I am outside it.”

    Oh, the pain when I read that.

  6. belarm says:

    sowellfan: I recently spent a large chunk of time in the hospital, with doctors running to and fro in attempts to diagnose me (how I longed for Greg House to join their staff…), and found that my propensity for researching everything I come in contact with to be helpful on multiple occasions. It all started after being given an anti-nasea medication without being informed (at least as far as I can remember – the opiates weren’t helping my memory much, I must admit) that there was a possibility it would make me “trip balls” as the kids say. After than, I began looking up information on the drugs I was being given (at least when I was cogent enough to remember the names), paid attention to the common side effects, and generally took an active role in my treatment. This accomplished two major things for me: not being very observant as to my own physical condition under normal circumstances, it helped me know what to look for; and it allowed me to understand the broad aspects of what my doctors were talking about, so I could ask informed questions. Of course, it was also fascinating as hell – my primary care physician started to apologize for being excited that he hadn’t seen my symptoms in his 28 years of practice, until he realized I was just as stoked.

    The flip-side, however, I can appreciate in a strongly analogous way: I work in IT, and while I love coming across informed clients, sometimes I wonder if they know the reason they pay me is that I have expertise they do not. Questioning your doctor is good; throwing out his/her opinion because it clashes with your Internet-based self-diagnosis is dangerous. As is often the case, the proper course of action is probably somewhere between the two extremes. Self-education is always helpful – so long as you remember that’s what it is.

    As to informing your PCP about the incident: I vote absolutely ‘yes’. Your doctor is probably (hopefully) not aware that the MD they referred you to makes recommendations that are outside the medical mainstream, and would probably appreciate being informed of such. The referrals a doctor makes speaks to his credibility, after all.

    As to this crap:
    “I am just as comfortable practicing within an evidence-based framework as I am outside it.”
    The only response I can think of is “then you’ve no business practicing a craft which only works in one of those ‘narratives’.”

  7. Citizen Deux says:

    This should be printed at the top of all patient consent forms

    Questioning your doctor is good; throwing out his/her opinion because it clashes with your Internet-based self-diagnosis is dangerous. As is often the case, the proper course of action is probably somewhere between the two extremes. Self-education is always helpful – so long as you remember that’s what it is.

    How to get patients to view themselvs as objectively as possible? One thing my practitioner spouse always impressed upon me was that patients lie – either by omission or comission. If you could reduce that by 50%, think how much more effective your treatments would be.

  8. Versus says:

    Sowellfan: Yes, you should raise your concerns with the PCP and with the first hemotologist’s practice group. This nonsense will not stop unless we speak up. Good for you for checking out the chelation recommendation.

    Dr. Jones: I think you are underestimating the ability of non-scientists to understand your objections. If you say something to the effect that you oppose the publication of this information because it is not backed by good scientific evidence and might cause harm to those who follow it, I don’t see why they wouldn’t understand that. If, in the future, Dr. CAM accuses you of not being “openminded,” tell him you will be glad to reconsider once he presents evidence that the treatment is safe and effective. Ask him why he is willing to compromise his ethical standards in favor of publishing this article.
    BTW, what kind of website is this? Why would an article giving medical advice written by a “consumer” be considered?

    Maybe you MDs should put together a CME course titled “Arguing with Idiots: How to Avoid Post-Modernist Traps and Other Tips on Discussing CAM.”

  9. DavidCT says:

    I don’t know how the training is in medicine but in dentistry there is little in the way of learning to evaluate evidence. It was only when I went on to specialty training that evaluation of the literature was taught. As an undergraduate the primary information intake was accepting information from authority. Now after graduation when discussing new information it is usually ” X (insert the name of someone on the lecture circuit) says ……”. Practitioners in “Holistic Dentistry” are just experts with different information.

    Certainly not everyone buys into this lack of evaluation, but years of being required to accept authority with little question makes it easier to sell magical thinking to otherwise intelligent people. Medical people have not special defenses against cleverly argued nonsense. If the time spent on learning about “integrative” therapy could be spent learning literature review we should see fewer people on the Kool-Aid.

  10. weing says:

    I’ve found several books through the AMA that are helpful in this.
    I can recommend:

    Fallacy-Free Reasoning in Medicine
    Evidence-Based Practice: Logic and Critical Thinking in Medicine
    A Physician’s Self-Paced Guide to Critical Thinking

  11. hatch_xanadu says:

    I think that attempting to speak out against subjecting children to useless and traumatic procedures — when the whole unscientific world seems to hate autistic kids so passionately that it justifies doing *anything* that might make them go away — is about as open-minded as you can get, VJ. Thank you.

    In addition, your linking to Farley’s website soundly refutes the strawman argument often put forth by CAM practitioners — that the (real) medical community attacks “harmless” CAM while ignoring the harm done by mainstream medicine. Thank you again.

  12. Gads, Val… When he said, “I am just as comfortable practicing within an evidence-based framework as I am outside it,” I pictured you as Veronica Cartwright and Dr. CAM as Donald Sutherland in the last scene of the 1978 Invasion of the Body Snatchers. Sometimes it truly does feel like we’re arguing against postmodernist pod people!!!

  13. Tim Kreider says:

    ugh, I think I know someone similar on my campus. When promoting CAM to a general audience he points out how this herb or that indication for acupuncture was shown ineffective by a trial. When hosting a lecture series or publishing a newsletter for an already pro-CAM audience, he brings in the homeopaths.

  14. SD says:

    Sowellfan:

    Uh, okay.

    This appears to be one of those “pattern-matching” moments, where somebody keys off a single word and determines that chakras are about to be manipulated.

    Clue: when you hear the word “chelation”, it is not a surefire indicator of woo. Chelation is a real process that really-really happens, it’s just that it only happens to be medically good in a relatively limited number of circumstances where the ion is chemically different enough and dangerous enough that it makes it both relatively easy and relatively less dangerous to chelate than to just leave it there and let the body sequester it or excrete it on its own (e.g. lead poisoning). Chelation describes the complexing of an inorganic ion (typically a transition metal) with a multidentate ligand (typically organic). Ex: Porphyrins “chelate” iron, making hemoglobin.

    The “chelation therapy” much-maligned by the folks here, if memory serves, is therapy with EDTA to remove calcium from artery plaques. Yes, EDTA chelates calcium. (I think the type they use for lead poisoning doesn’t, though, as it already carries a calcium with it, which the lead displaces.) No, no studies have shown this treatment to be effective to the best of my knowledge, and it is potentially dangerous. It also fails the bullshit test: the biggest stores of calcium in the body are (a) the bones, and (b) the nervous system, so those sources of calcium will be competing with the plaques for available EDTA. I envision that the chelation process, by the time it is successful in decalcifying the plaques to any reasonable extent, leads to a highly entertaining endstate involving soft plaques in the coronary arteries ready to rupture, internal bleeding (EDTA is an anticoagulant), osteoporosis, and neurological problems, possibly including extreme pain. (I have nothing on which to base this constellation of misery other than the critical body systems that involve calcium in some way, which are a lot of them, and the relative concentrations of calcium in various locations in the body.) Hmm. Maybe not; ooo, but it does look like it can at least cause arrhythmias and kidney failure[1]. I suppose those are the second-place prizes.

    (Unrelated side question: I wonder if it’d work if it were delivered in high concentration and small doses via catheter upstream of the plaques, sort of the same way alcohol ablation is done. I suspect that this would be a Bad Idea[tm] done to the coronary arteries, given the likelihood of arrhythmia, but might it be useful for plaques elsewhere, e.g. the legs?)

    2nd clue: You are taking the second doctor at his word when he says there’s no ongoing debate about the methods. This is a case of he-said-he-said, in other words. Do you *know* that Doctor 2 is right, for a fact, possibly because you asked him for a cite for the stud(y|ies) that settled the matter definitively? Or, are you – like the man with two watches – now not sure about exactly what time it is, or which doctor is right?

    I can relate that based on my internal store of knowledge and cursory research – chemistry powers, activate! – neither doctor has produced an implausible answer. In fact, quoth the Merck Manual (found, natch, on teh Intarwebz):

    For *primary* hemochromatosis:

    http://www.merck.com/mmpe/sec11/ch145/ch145b.html

    “Phlebotomy is the simplest method of excess iron removal in most cases. It prolongs survival but does not prevent hepatocellular carcinoma. As soon as the diagnosis is made, about 500 mL/wk of blood (about 250 mg of iron) is removed weekly until serum iron levels are normal and transferrin saturation is < 50%. Weekly phlebotomy may be needed for several years. When iron levels are normal, further phlebotomy can be performed to maintain transferrin saturation at 50 mg/day of iron in the urine. Treatment goals and monitoring (with serum iron levels and transferrin) are the same as for primary hemochromatosis (see Iron Overload: Primary Hemochromatosis).”

    This was five minutes with Google and a couple of good guesses about where to find some information. Your library has the rest. Synopsis: neither doctor is *necessarily* wrong, absent further information (which presumably you don’t want to post on the Intarwebz). Chemically speaking, deferoxamine looks like it’s flexible enough and has enough nucleophilic groups tangled in there to get a nice tight grasp on multivalent cations, e.g. iron. It is a specific treatment for acute iron toxicity, or so sayeth the PDR. It *does* remove iron, in other words, and reasonably effectively, although it may not be as efficient as bloodletting. Maybe there’s another reason Doctor 1 likes deferoxamine and Doctor 2 likes leeches. Who knows? Ask Doctor 3. Ask Doctor 2 on what study he bases the assertion that Doctor 1 is full of shit. Ask Doctor 1 why he wants to stuff a pill down your wife’s gullet while Doctor 2 simply wants to drain her oil on a weekly basis. Better still, get the two of them in the same room and have them duke it out – maybe handing each one a half-brick first, or a 2×4 – then deal with the winner (or, if you like, “survivor”). This is a fairly straightforward exercise.

    (This is one of the most asinine things about iron-clad beliefs in so-called “science-based medicine”: it is that while science [i.e. "chemistry and physics", not "statistics and epidemiology"] is a good thing to base medical decisions upon, medicine itself is art and not science, because we do not know anywhere near enough for it to *be* a science yet, and that it is still possible – indeed, common – for multiple good-faith professional opinions to exist, and for exactly none of them to be clearly wrong in a given instance. The belief in the scientific method, itself good, is bent slightly into a belief in the certainty of the status quo and in the infallibility of dubiously sciency methods [again, "statistics/epidemiology"], which is bad. The true scientist is always ever so slightly uneasy about his assertions. Steely certainty of the type exhibited at SBM is the basis for an uncharitable observation that if you’re so goddamned sure you’ve got the right answer, or even if you’re sure of the odds, you can and should be expected to offer a money-back guarantee. This, of course, is something that doctors *never* do, except at gunpoint.)

    Note: I am not a doctor. You should ask a medical professional for medical advice before seeking or refusing any treatment, heh heh heh. There are plenty of doctors to choose from here. Curious observation: none of the known MDs has said anything about it. Whyzzat? Afraid of pissing in someone else’s ricebowl, guys? >;->

    “okay, fine, we’ll just cut the damned thing in half, how about that?”
    -SD

    [1] http://www.americanheart.org/presenter.jhtml?identifier=3000843

  15. Mojo says:

    I am just as comfortable practicing within an evidence-based framework as I am outside it.

    http://www.medicinescomplete.com/journals/fact/current/fact0602a02t01.htm

  16. Skeptico says:

    “I am just as comfortable practicing within an evidence-based framework as I am outside it.”

    How does he decide when to practice within an evidence-based framework, and when to practice outside of it?

  17. Calli Arcale says:

    SD: yep, you’ve nailed one of the two biggest woo-woo uses of chelation: treatment of atherosclerosis (which may or may not actually exist in the patients being treated). That’s the biggest indication promoted by the chelationist organizations, and it’s been going on for years. EDTA isn’t the only chelator they use. DMSP is another. Some are oral; some are intravenous. Some are actually given as salves (no kidding!) which fortunately are not as dangerous as intravenous EDTA, mostly because in a salve, all they do is make soap work better. (EDTA is included in a lot of soaps to strip calcium out of hard water. It doesn’t penetrate the skin, and is thus completely safe for this use.)

    A more recent bull***t use is to treat alleged mercury poisoning in autistic children, often diagnosed on the basis of bogus tests (some which involve chelation — you read that right; they chelate people to find out if they need chelation, which is crazy considering how dangerous chelation can be). It’s a sort of off-shoot of the anti-vaccination movement, and it’s wrong-headed in so many ways that my mind boggles at the arrogance of the chelators who practice it.

    You’re right, though, that they are legitimate uses of chelation. It’s becoming less and less common, though, as safer alternatives become available. I think lead poisoning is about the only indication left.

    Regarding atherosclerosis, you’re right that the basic premise is reasonable — plaques have lots of calcium, and chelators can remove calcium. Decades ago, this was a hot topic in medicine, and held so much promise that it was intensely studied. Unfortunately, it didn’t pan out. Turns out, the calcium in arterial plaques is mostly underneath a hard layer of dead cells, which, like the skin, are impervious to EDTA. The EDTA can’t reach the calcium to chelate it in the first place. But it *can* reach the calcium that your nerves and muscles use to make the muscles move, and the most publicized chelation-related deaths have all been due to cardiac failure due to hypocalcemia.

  18. Harry says:

    @sowellfan

    Also, do you folks think there’d be any point in establishing a *list* of doctors who sign on to science based medicine? And perhaps they could get kicked off if there are credible reports that they’re using CAM?

    Sadly, that has already been done and it doesn’t work as well as we would like it to. It’s called the Board of Medical Examiners ;-)

  19. SD says:

    Interesting. A portion of my post got clipped out somehow.

    Beneath the portion for primary hemochromatosis, this bit should have been there:

    — snip —
    For *secondary* hemochromatosis, which depending on what caused it can also be “hereditary”:

    http://www.merck.com/mmpe/sec11/ch145/ch145c.html

    “Phlebotomy may not be helpful, because these disorders sometimes cause anemia, thereby limiting the ability to remove enough blood. If anemia is present, deferoxamine (1 to 2 g once/day over 8 to 24 h in adults; 20 to 40 mg/kg/day over 8 to 12 h in children) should be given as a slow IV infusion overnight through a small portable subcutaneous pump for 5 to 7 days/wk; this process effectively reduces iron stores. Because tachyphylaxis occurs with deferoxamine therapy, continued efficacy must be evaluated (usually by urine iron measurement). Alternatively, salmon-colored urine confirms > 50 mg/day of iron in the urine. Treatment goals and monitoring (with serum iron levels and transferrin) are the same as for primary hemochromatosis (see Iron Overload: Primary Hemochromatosis).”

    — snip —

    “ah-ah-ah”
    -SD

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