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November Hodgepodge

There have not been a lot of topics of late that warrant extensive analysis and discussion.  But there are a number of little topics of interest, each worthy of a few paragraphs of discussion, archetypes of issues in medicine, science based and otherwise.

Xigirs. No, it is not whale vomit, but close.

Last month Xigris  was pulled from the market by Lilly.  Yes, I understand the shock. Xigris, we hardly knew ye.   Xigris is the brand name for drotrecogin alfa, or activated protein C.  It is an enzyme in the clotting cascade that is/was given for the treatment of sepsis.

Sepsis is the syndrome the occurs when bacteria, or  parts of the bacteria, get into the blood stream.  A large number of mind bogglingly complex physiologic derangements occur, often with refractory multi-organ system failure and death.  At a minimum sepsis kills one in three, about 200,000 deaths a year in the US. During my career the best and brightest have looked for interventions that modify the underlying pathophysiology and alter the course of the disease.  Besides antibiotics and support of failing organ systems, there had been no breakthroughs in the treatments of sepsis until the PROWESS trial  in 2002, published in the NEJM, that demonstrated  survival benefit in patients with severe sepsis: 24.7% of patients taking Xigris surviving and 30.8% in the placebo group died.

Although the drug was approved, the vote was split and there was debate about the results from the beginning. Besides the study protocol changing in mid-trial, the survival benefit was only found in post hoc subgroup analysis aka data dredging.

Was it a statistical fluke or the real deal?  Well, at up to $20,000 a therapeutic course, Lilly was of the opinion it was of benefit:

Xigris is a proven lifesaving advance for the treatment of adult patients with life-threatening severe sepsis. To imply otherwise in the pages of one of the world’s most prestigious medical journals — 10 months after the FDA approved this therapy based on the strength of our clinical data — attempts to turn back the clock on the treatment of severe sepsis. The opinion article’s assertions serve only to confuse physicians who are attempting to make the best treatment decisions for their patients with severe sepsis, ” says August M. Watanabe, MD, executive vice president of science and technology for Lilly. “We disagree with the authors’ suggestion that we should contemplate denying severe sepsis patients fighting for their lives access to an FDA-approved therapy in order to replicate the proven findings from the largest trial of its kind ever conducted. In our viewpoint, that would be unethical.”

And

Severe sepsis shows no mercy, so I want to offer my patients every advantage in their struggle to survive,” Greg A. Schmidt, MD, from the University of Chicago in Illinois, says in Lilly’s news release. “There is no doubt in my mind that Xigris, when used appropriately, is an unprecedented, lifesaving advance for this vulnerable patient population.

So, do you want to give our drug despite real concerns about efficacy and safety,  or do you just want people to needlessly die?  I will defer that question to Ron Paul.  Quite the message for clinicians, who, of course, will always err on the side of patient survival.  There are times I truly sympathize with the anti-Pharma conspiracy proponents, I really do. So often Pharma companies behave just as one would expect if they were driven by greed with no concerns for patients. So I repeat the aphorism,  “Never ascribe to conspiracy that which is adequately explained by incompetence.”

When the drug was released hospitals developed guidelines to ensure that the agent was only used in severe sepsis, those in whom the drug was allegedly effective and where the risk was less than the benefit,  since there was an increased risk of bleeding with the drug.  My hospitals used less Xigris than other institutions in the Portland metropolitan area, and I heard through the grapevine that it was being suggested we were not providing optimal care since were relatively parsimonious in using the drug. As the years past, more studies were done, none definitive, that suggested Xigris had no efficacy but did have serious complications.  As of 2011 the Cochrane review concluded

This updated review found no evidence suggesting that APC (activated protein C) should be used for treating patients with severe sepsis or septic shock. Additionally, APC is associated with a higher risk of bleeding. Unless additional RCTs provide evidence of a treatment effect, policy-makers, clinicians and academics should not promote the use of APC.

Like acupuncture, despite mounting data that Xigris was neither safe nor effective, it’s use continued, although at volumes far less than Lilly would have liked.  When the drug was approved, Lilly was mandated to do another study to prove that Xigris was indeed effective and safe. Up to this year about a billion dollars had been spent on Xigris, but no longer, because a new trial demonstrated that yes indeed, PROWESS was a statistical fluke, and that Xigris as no better than placebo for the treatment of severe sepsis. Unlike acupuncture, or any number of SCAM’s, definite trials demonstrating lack of efficacy and safety are, eventually, heeded and Xigris was pulled from the market.

If Dr. Watanabe has any comment now, I can’t find it on the internet; he is evidently retired and Dr. Schmidt has also been silent in the topic.

There are multiple lessons to be learned from this very expensive exercise in medical futility.

1) Don’t trust the results of a single study, especially a study as flawed as PROWESS.

2) Don’t trust the results of a single study whose benefits are only demonstrated in after the fact analysis: post hoc subgroup analysis is not to be believed.

3) This is a good example of the so called decline effect, but is not due to the medications losing effectiveness, but to better designed studies removing potential bias.  My rule of thumb, which I discovered in a post hoc analysis, is that in the real world diagnostic tests and therapeutic interventions are only half as good as the published results.  Given the minimal effect in the poorly done studies for most CAM efficacy, a 50% decrease in real effectiveness takes even the most robust findings almost to zero.

4)  Medical practice changes and ineffective interventions are abandoned. Eventually.  That has never happens with CAM.

5) When I was an Intern I carried a NEJM article  in my coat on how to interpret  Swan-Ganz catheter measurements, and every time I had a patient with a Swan, I would re-read the paper until one day I realized I knew the information in the reference and chucked the paper into the recycler.  Swan’s are rarely used today (another change in practice due to evidence), but I would recommend to every resident they carry Why Most Published Research Findings Are False by John P. A. Ioannidis in their lab coat, and read it every time they get excited about a new intervention.  To bad Ioannidis was not available when the FDA was approving Xigris.

6)  And  damn if the whole this doesn’t just piss me the hell off, that so much time and money and potential patient risk was wasted all because of bad science and bio-politics.  But of course, if we ignored the bad science and bio-politics and only paid attention to the good science, there would be no Departments of Integrative Medicine.

Informed Consent

Dr. NovellaJann Bellamy, and Orac have discussed the article in Paediatrics on informed consent and CAM.  The basic argument is that  physicians should give informed consent about those CAMs that allegedly are of increasingly proven value. Not that I can think of one that meets the criteria.  The arc of CAM and EBM has consistently been that better designed studies demonstrate decreasing effect until excellent studies show no effect.

The article start with a case designed to tug at the heart strings:

The parents of 6-year-old Jake, a young boy with medulloblastoma, are distressed by the nausea and vomiting he is suffering as a result of chemotherapy. His chemotherapy-induced nausea and vomiting (CINV) occur spontaneously and are also being triggered by sights, sounds, and smells for up to 2 weeks after a course of chemotherapy. His parents believe that this is preventing him from eating properly and that the psychological toll of the adverse effects of treatment are limiting his ability to combat the cancer. They ask Jake’s oncologist about other options to alleviate his nausea. He has tried dimenhydrinate and dexamethasone in addition to ondansetron, but like metoclopromide, they have not provided Jake with sufficient relief. Jake’s oncologist recommended that he continue with nabilone, a synthetic cannabinoid; however, Jake refuses to continue this drug, because it makes him feel dizzy and anxious. Disappointed, his parents resign themselves to the possibility that Jake might not find relief from his CINV.

While communicating online with other families of patients with cancer, Jake’s parents discover that a consensus panel through the US National Institutes of Health (NIH) has recognized the effectiveness of acupuncture for alleviating CINV. They ask their oncologist about it, but his response is noncommittal. Jake’s parents take him out on intermittent passes from the hospital to an acupuncturist in the community. They are delighted to see that his nausea and vomiting are much improved after each acupuncture session. Jake begins to regain his appetite, gains weight, and generally has a better sense of well-being.

Jake’s parents are upset that their physician, whom they believe also had access to information outlining the potential benefits of acupuncture, did not tell them that it was potentially a safe and effective treatment option for CINV. When they describe their son’s improvements after acupuncture, their physician dismisses them as a “placebo effect.” Jake’s parents are concerned that the physician instead offered antiemetic medications that, from their point of view, only created more problems and unnecessary adverse effects.

I would  like to offer a more realistic case:

6 year old Jake gets acupuncture, despite the studies that consistently demonstrate that acupuncture is no better than sham acupuncture even for cancer therapy induced nausea and vomiting and that sham acupuncture, such as toothpicks twirled on the skin, has fewer complications.

Because of the suppressed immune system and sloppy acupuncture technique, Jake gets an MRSA necrotizing fasciitis, bacteremia and sepsis that leads to increased vomiting, aspiration, respiratory failure and intubation. Despite aggressive debridement, including limb amputation, he dies of multiorgan system failure, primarily vomiting induced aspiration ARDS.

Oh, says the acupuncturist, it wasn’t my doing.

Due to guilt over inadvertently killing their son by inflicting upon him a dangerous yet worthless intervention, the parents  marriage dissolves in a bitter stew of recriminations, infidelity, and alcoholism.

I do agree with one aspect of the authors vignette:  acupuncture does have the potential to be safe.  It all too often fails to  live up to that potential as best I can tell.  But effective?  Not so much.

There are two studies that compare sham acupuncture with real acupuncture in oncologic nausea and vomiting: one for chemotherapy induced nausea and vomiting  and another for radiation induced nausea and vomiting.

Both showed that acupuncture and sham acupuncture were equal in decreasing nausea and vomiting.  When an intervention is equal to placebo, the procedure is considered to nothing.  The conclusion should be that acupuncture does nothing.  Oddly with acupuncture the conclusion is  often that both real and sham acupuncture are efficacious.  No wait.  Xigris was equal to a sham intervention.  Therefore they both work.  Xigirs need not be pulled from the market, just reposition it as an alternative therapy.  Lilly, you can keep the Xigris gravy train running.

To quote the abstract

However, as many as 95% of patients in both groups considered the treatment to be effective, and 89% were interested in receiving the treatments in the future.  In the light of the apparent conflict between lack of specific effects from verum acupuncture and large subjectively experienced positive effects it seems interesting to evaluate if acupuncture has antiemetic effects related to nonspecific mechanisms.

and the discussion

Our results indicate that nonspecific factors such as the extra care or the high expectations of positive treatment effects, not the specific characteristics of verum acupuncture, reduced emesis.

Acupuncture needles do nothing.  Like all SCAM, the benefits are the evolutionary equal of monkeys picking nits and grooming each other.  It is calming. So why risk killing a few children with cancer by sticking them with needles? Would it not be better to harness the power of the lie (and we all lie to our kids, just think Santa) by the parents kissing the boo boo to make it better?  And maybe get rid of some nits in the process.

Stare Master

Every city has its alternative newspaper, the edgy, often left leaning, and somewhat soft about science, freebie.  In Portland it is the Willamette Week, and being left leaning myself (my youngest son says I am edgy in the same way I am cool.  In other words not) I pick up a copy every week. In the November 9th edition there was a 3/4 page article in the Headout section entitled Stare Way to Heaven.  The topic does lend itself to plays on word.

I tend towards the left leaning, tree hugging approach to the world so I like the Willamette Week, but  I could not tell if the tone of the article  was meant to be ironic or  a legitimate health care recommendation.  I emailed the  author of the piece asking and he never responded. Although I want to see it as ironic, I can’t tell.   I am old enough that my hipster irony meter no longer functions, and perhaps it never has.

They recommend a visit to Braco, the Croatian gaze healer.  What does Braco do?  He just stands and looks at you, with what appears to be a kind face and a gentle smile.  That’s it.  He stands and stares  for 5 to 7 minutes and miracles happen, from cancers vanishing to preventing Irene induced apartment flooding.  His website specifically says his gaze is no substitute for medical care and Braco denies he is a healer, just a conduit for energies.  It is the gazed upon who make all the effusive claims of benefit.

My wife points out I tend to stare at people in public, especially if there have medical anomalies, and I know it is not polite to stare.  Unless you are Braco.  He is a marathon gazer:  “Groups of 50 to 1000 people gather for a healing session and Braco now does twenty sessions a day working 10-12 hours each day at locations across Europe. He is booked with appearances four years in advance.”  He charges 8 dollars per person for a 5 minute group gaze, preferring volume purchasing,  although the web sites say he does take any of the money for these appearances.  I would love to see his tax returns.

There is nothing unique in what Braco offers; it is another form of faith healing, albiet it a minimalist form for the practitioner.  Low overhead, minimal exertion, the epitome of the ideal of ‘don’t just do something, stand there.”  The explanations for the effects he has on others are the usual vague energies and consciousness raising:

Prof. Alex Schneider explains that “Braco is taking the people up to a higher level of consciousness. During those moments when he is gazing at us, he is lifting us up to this higher level where we can feel who we really are – and this is much more than just our physical body. He brings us home to ourselves!

and

But today, we have some ideas about the structures in the human nervous system that allow some individuals to affect a “non-local reality” just by mere intention. Although Braco doesn’t consider himself to be the saint of any congregation, he often experiences the states of  ”inner certainty” that things are taking a certain course. He avoids pointing to the individuals in question because that always creates the flow of unneccesary and counterproductive inquieries that are threatening the positive outcome when it’s already at the sight.

The spontaneous and natural flow of energies is an absolute must. The surrender to “what is” is the most favorable starting point to resolve any complex and seemingly hopeless situation.

It is generally believed that there are two possible ways Braco’s „non-active action“ works. First, it’s the activation of a brain structure now known as The God’s Module and second, the creation of a radical change in spiritual anatomy. Of course, both views are opened for discussion, even more, it is desirable to clarify these ideas in the favor of improvement of the statistics connected to Braco’s work.”

Non-active action.  Sounds like what occurs when I ask the boys to mow the lawn. I scoffed when Jacques Benveniste suggested that homeopathic information could be transmitted over the phone lines.  It turns out Benveniste was ahead of his time. Braco can live stream his stare or you can watch a You Tube video with the same effect as a personal stare down.

I recently was asked what I thought was the oddest CAM and I answered oscillococcinum.  But we have a new winner.  And it really isn’t polite to stare.

Posted in: Acupuncture, Energy Medicine, Pharmaceuticals, Science and Medicine

Leave a Comment (24) ↓

24 thoughts on “November Hodgepodge

  1. Jann Bellamy says:

    “Stare Master” suggests a solution to both the U.S.’s intractable unemployment problem and the spiraling cost of health care. The states could make “gaze healing” a licensed health care profession. With no education or training necessary, many people could go right to work as “G.H.P.s” (Gaze Healing Physicians). As a bonus, the public would confuse “G.H.P” with “G.P.”, the old term for family physician, a strategy that has worked well with the term “doctor” and N.D., O.M.D., and D.C. And talk about “Affordable Healthcare”! At $8 per session, it’s much, much cheaper than real health care. A win-win!

  2. Tom S says:

    Re: Xigris. Dr. Watanabe is deceased.

  3. cervantes says:

    Let’s be absolutely clear — post hoc analysis means absolutely nothing. Well, okay, it can generate hypotheses that one can then test in a subsequent experiment, but that is all. Yet regulatory authorities around the world don’t seem to understand this. A couple more points:

    Treatment effects are normally heterogeneous, and drugs are most likely to benefit people who are at highest risk for whatever they are meant to prevent. The majority of patients are not in that category, however, so the average risk/benefit ratio actually applies to a small subset. If there is some attributable absolute risk, most patients could actually be harmed by a drug that appears to be efficacious in an RCT. It’s a little hard to explain without drawing a diagram, but anyway, it’s true.

    But . . . we often don’t know who is at highest risk. Just looking at the bundle of factors that predicts a secondary event — e.g. death if you already have sepsis, a second stroke if you’ve had a first — is highly misleading, very likely even upside down, because of a phenomenon called index event bias. Again, a little hard to explain in a comment here. But the point is, we’re approving and marketing drugs and treatments based on very bad evidence and reasoning, in many cases.

  4. Anthro says:

    Perhaps a stupid question from a lay person, but here goes anyway: If better results come from better-designed trials, why don’t we simply require studies to meet a threshold of proper design BEFORE they are implemented? I think Ben Goldacre talks about this in his book “Bad Science”, although I’ll have to reread that bit to be sure.

    Wouldn’t it save a lot of time, money–and lives, if we just didn’t bother with all the poor and not-so-good studies?

    ——

    As to Braco, there is a woman in India (I saw this on Globe Trekker) who hugs people and gets similar “results”. People wait in long lines for hours to be hugged by her. I have to admit that I have often felt “better” after a good hug–I’ll have to remember to try it next time I have a cold–although staring would lessen the chance of transmission of the cold I suppose.

  5. Ed Whitney says:

    “24.7% of patients taking Xigris surviving and 30.8% in the placebo group died” should read “24.7% of patients taking Xigris died and 30.8% in the placebo group died.” If the death rate in Xigris had been 75.3% the conclusions would have been rather different!

    PROWESS was released ahead of its scheduled publication date because of its dramatic clinical implications. It had to be considered a really big deal to get this treatment.

    You must admit that Figure 1 in PROWESS looked mighty elegant—with such a persuasive diagram of the relevant pathophysiology, what could go wrong?

    BTW, cervantes, if you have a link or something for more information about index event bias, that would be a real service to this audience. There is a paper in the current Ann Intern Med involving the CHADS2 score for predicting stroke in atrial fib, and the “S” is for previous stoke. Whatever you happen to have about index event bias would be welcomed. Thanks.

  6. DugganSC says:

    “it’s use” should be “its use”. Minor thing, but it jumped out at me.

  7. Quill says:

    Thanks for the “Stare Master”! (Makes me wonder if there will now be a new thing called Chiropractic Staring or a new wing of homeopathy where all you have to do is stare at a picture of a single molecule of something or other.)

    I can now safely say that my good health is partly attributable to our cats who stare at me for at least thirty minutes a day, often before their meal times. Obviously, therefore and thusly, the natural and ancient feline holistic paradigm, coupled with their non-anthropomorphic energy moving and transmigrating through their vertical pupils, produces a positive bioenergetic non-locality response in me at my higher levels. (It also seems to make them get their dinner on time — bonus benefit!)

  8. MC “Never ascribe to conspiracy that which is adequately explained by incompetence.”

    I really enjoyed this post, firstly, I love the above quote.

    Also, thanks so much NOT pulling out the “placebo use is unethical” reasoning for the pediatric case. We do lie to our kids, cause they are not small adults. Some knowledge is just not developmentally appropriate.

    Although I would suggest that kiss the boo boo only really works well for small boo boos. Things like nausea induced by drugs, chemo, radiations, surgery, really seem to warrant bigger “kisses”*. If we admit that we are going to use some sort of therapy that is functioning as a psychological intervention (with all the various factors that suggests), then we should carefully think about what will really offer the most benefit and the lowest risk to the child. Is it some sort of therapy that offers a distraction from anxiety or communicates to the child that something is being done or is it a form of positive conditioning? It seems these interventions can and are being looked at in a more analytical way…rather than just choosing any old treatment that is equal to placebo.

  9. Wholly Father says:

    “Both showed that acupuncture and sham acupuncture were equal in decreasing nausea and vomiting”

    Given the results of the studies, and the small, but finite risk of acupuncture, how can “real” acupuncture be ethically justified for this indication?

  10. pmoran says:

    Both showed that acupuncture and sham acupuncture were equal in decreasing nausea and vomiting. When an intervention is equal to placebo, the procedure is considered to nothing. The conclusion should be that acupuncture does nothing. Oddly with acupuncture the conclusion is often that both real and sham acupuncture are efficacious. No wait. Xigris was equal to a sham intervention. Therefore they both work. Xigirs need not be pulled from the market, just reposition it as an alternative therapy. Lilly, you can keep the Xigris gravy train running.

    This is a specious argument that only works if you believe that psychological factors of a nurturing kind have no effect whatsoever upon any kind of illness.

    Look, I fully acknowledge the many awkwardnesses associated with any dealings of the mainstream with mainly-placebo medicines like acupuncture and chiropractic. That does NOT entitle us to interpret the available science in simplistic, self-serving ways in what many seem to see as a battle to stamp out all use of placebo medicines.

    It also reflects so poorly on us that we are not able to celebrate in some way the resolution of that child’s distressing chemotherapy-induced symptoms ! When the science supports non-specific responses, even if mainly as a distracting influence, why would we choose to adopt such an uncompromising, contrary, even alienating position in relation to the interests of our patients?

    Another paradox — the dangers of acupuncture could be better managed if it were NOT opposed at every turn by the mainstream. Furthermore, if benefits exist for some patients from “acupuncture-like procedures” for any reason then standard cost/risk/benefit considerations could apply to their specific plight.

    I don’t know that there is a good and clear answer to this tangle, but could we be just a tad less smug about the supposed scientific superiority that has brought us to this pass?

  11. DevoutCatalyst says:

    In that case, wouldn’t we want acupuncture without needles, and without acupuncturists?

  12. wales says:

    Thanks for the link to the enlightening website of acupuncture anecdotes gathered by the Atlanta software engineer…. C’mon, you can do better than that. (Can’t you?)

    I almost gave up on the link, after the first four anecdotes’ links to sources proved to be bogus.

    I did find an anecdote that seemed to be fruitful, about the 1,000+ individuals potentially exposed to disease via acupuncture over a 25-year time span…”Even though the risk of infection from HIV or hepatitis B and C during acupuncture is “virtually nil,” there are no guarantees, said Dr. John Carsley, head of infectious diseases for the Montreal Public Health Department.”

    The source article reveals that the “acupuncturist” was unlicensed and was re-using needles. Disposable needles have been required since 2003 in that locale. Duh, gotta check those licenses and needles.

  13. BillyJoe says:

    micheleinmichigan,

    “Also, thanks so much NOT pulling out the “placebo use is unethical” reasoning for the pediatric case.”

    Why on Earth would the use of placebo be unethical.
    Surely it’s not placebo use that is unethical, but claiming it as an intrinsic effect of a treatment that actually does nothing.

    “We do lie to our kids, cause they are not small adults. Some knowledge is just not developmentally appropriate.”

    That doesn’t mean you have to lie to them, surely?
    Maybe you have an anecdote to illustrate what you mean.

  14. BillyJoe says:

    pmoran,

    “It also reflects so poorly on us that we are not able to celebrate in some way the resolution of that child’s distressing chemotherapy-induced symptoms !”

    I don’t think anyone is doing that.
    (so I guess it’s not reflecting so poorly on us ;))

    “When the science supports non-specific responses, even if mainly as a distracting influence, why would we choose to adopt such an uncompromising, contrary, even alienating position in relation to the interests of our patients? ”

    I don’t think anyone is doing that either.
    The acupuncture is bullshit. The non-specific reponses are not.
    So why not use the non-specific responses and ditch the bullshit?

    “the dangers of acupuncture could be better managed if it were NOT opposed at every turn by the mainstream. ”

    Why is it not possible to oppose useless treatments like acupuncture at every turn AND ensure that those who insist on using it anyway, do so without causing harm.
    Where is the evidence that these two aims are mutually exclusive?

  15. BillyJoe says:

    pmoran,

    “It also reflects so poorly on us that we are not able to celebrate in some way the resolution of that child’s distressing chemotherapy-induced symptoms !”

    I don’t think anyone is doing that.
    (so I guess it’s not reflecting poorly on us ;) )

    “When the science supports non-specific responses, even if mainly as a distracting influence, why would we choose to adopt such an uncompromising, contrary, even alienating position in relation to the interests of our patients? ”

    I don’t think anyone is doing that either.
    The acupuncture doesn’t work. The non-specific reponses do.
    So why not use the non-specific responses and ditch the bit that doesn’t work?

    “the dangers of acupuncture could be better managed if it were NOT opposed at every turn by the mainstream. ”

    Why is it not possible to oppose useless treatments like acupuncture AND ensure that those who insist on using it anyway, do so without causing harm.
    Where is the evidence that these two aims are mutually exclusive?

  16. @BillyJoe, thanks for showing me how unclear I was.
    “Why on Earth would the use of placebo be unethical.”

    Right, I was using “placebo use” as a shot cut for “null treatments that claim there is an effect”. Not very clear.

    “We do lie to our kids, cause they are not small adults. Some knowledge is just not developmentally appropriate.”

    That doesn’t mean you have to lie to them, surely?
    Maybe you have an anecdote to illustrate what you mean.

    An anecdote. Two weeks ago my daughter had to have four teeth pulled. She is the opposite of stoic. She generally dissolves into a kicking fit at the sight of a pair of tweezers to pull out a splinter. She was very nervous before her appt. and asked what they would do. I told her that they would give her some medicine to relax her, give her some medicine to numb her mouth, then pull the teeth, but it wouldn’t hurt when they pulled the teeth, because the numbing medicine. What I did not tell her is that the numbing agent would be shots, which she fears and hates and would have fixated on with increasing anxiety for the whole drive and waiting room time, possibly culminating in a panic driven kicking fit before the examining room door. I wanted her to have the gas before she found out about the shots (if she ever found out, the dentist is very good about hiding shots). That, in my mind, is lying because it’s developmentally inappropriate to tell the truth.

    Also, I’m perfectly happy to build the Santa illusion (which is more socially appropriate than developmentally, I admit) with my kids as well as let them believe that Fluffy, the kitty, is playing in some lush feline utopia since she passed. If I genuinely thought that sham acupuncture, with the required lie, would reliably take away my child’s nausea, I would be fine with the lie. The reason I would be fine, is that later, when the child gets past their magical stage, when they find out the lie, they will recognize it for something that benefited them AND that it was because they were younger. We don’t maintain the Santa illusion into the teen years

    But that’s not really my point. My point is, IF sham acupuncture does offer some actual benefit (decreased nausea) over nothing, then what else offers the same benefit? How about a sham that is more accessible as needed, like rubbing a colored stone. How about something that is not a sham, like the distraction of a toy or project, how about some sort of conditioning, where you have the child focus on some stimuli only when you know their stomach feels settled for a number of times, then return to that stimuli when they have nausea? When you know that there is a real physiological effect from a psychological therapy, don’t you just want to study it, tinker with it, to see if you can make it more reliable or better in some way?

  17. pmoran says:

    Billyjoe: “It also reflects so poorly on us that we are not able to celebrate in some way the resolution of that child’s distressing chemotherapy-induced symptoms !”

    I don’t think anyone is doing that.
    (so I guess it’s not reflecting poorly on us )

    __________________________
    Only if we hardly ever mean what we say. For example, how does Mark’s “Acupuncture needles do nothing. Like all SCAM, the benefits are the evolutionary equal of monkeys picking nits and grooming each other” . not intend to seriously rain on that family’s parade?
    ————————————————-
    “When the science supports non-specific responses, even if mainly as a distracting influence, why would we choose to adopt such an uncompromising, contrary, even alienating position in relation to the interests of our patients? ”

    I don’t think anyone is doing that either.
    —————————————————————-
    What other conclusion are people to derive from the oft expressed opinion on these pages that CAM is both useless and dangerous? CAM use is viewed as social pathology, whereas a case can be made that it is, overall, a healthy and inevitable reflex response to medical needs at this point in the history of mankind, but one that sometimes has certain serious side effects.
    —————————————————————–
    The acupuncture doesn’t work. The non-specific reponses do.
    So why not use the non-specific responses and ditch the bit that doesn’t work?

    —————————————————————-

    You cannot really divorce the two. For example acupuncture may not “work” as well without the patient perception that the skin is being penetrated. The regular attendances for “treatment” may deliver reinforcement and other encouragements. That will be difficult to mimic without some other, presumed placebo, therapeutic ritual.

    We are told that medical ethics prevent us manipulating patient perceptions this way.
    —————————————————
    “the dangers of acupuncture could be better managed if it were NOT opposed at every turn by the mainstream. ”
    Why is it not possible to oppose useless treatments like acupuncture AND ensure that those who insist on using it anyway, do so without causing harm.
    Where is the evidence that these two aims are mutually exclusive?

    ———————————————————
    We oppose regulation of such methods, while supporting regulation of medicine otherwise. Either regulation can reduce medical dangers or we are being inconsistent.

  18. BillyJoe says:

    Michele,

    Fair enough, but….

    Regarding your child’s dental treatment: not mentioning the needle is not lying. On the other hand, if your child specifically asked you if she would get a needle, you would get yourself into all sorts of trouble saying that she would not. There are really very few occasions where lying is beneficial and most are situations which are very unlikely to happen. If I was going to be burned at the stake unless I said I believed in god, I would lie.

    Regarding belief: our kids never believed in Santa Claus, and they have never believed in an afterlife (or feline utopia for that matter). Not because we told them these things don’t exist, we just never told them that they did. Apparently, they saw no reason to believe in these things, even though there must have been people all around them who did. I would never have treated my children with acupuncture for whatever reason. It doesn’t work and I’m not going to tell them that is does. They could lose trust in me if they later found out not only that I was lying to them but that I was lying to them deliberately knowing it was a lie. Alternatively they might continue to believe in it and take that as a lead into all sorts of pseudoscientific nonsense. They might believe that the acupuncture really did help despite what science says and they might learn to distrust scinece as a result and never escape their magical thinking.
    There are surely other ways to help a child with nausea. The care and attention of a loving parent for example.

    But I see from your last paragraph that you more or less agree with at least some of what I’ve said.

  19. Donna B. says:

    BillyJoe – you? asking for an anecdote? My…

    You are, however, simply wrong in telling Michele she did not lie. She did and I fully agree with her actions and her reasoning behind them.

    The child asked what would happen. Not telling her everything that would happen is a lie by omission and it also falls into the category of a lie that harms no one and helps someone – the least severe type of lie according to some. It is still considered a lie because of its potential to ‘backfire’.

    That type of lie is far, far removed from lying to your children about what you believe or don’t believe about religion, afterlife, Santa Claus, or feline utopias. I can’t remember ever believing in Santa Claus because my parents made sure their children didn’t. We played the game and had lots of fun with it — they enjoyed surprising their children with gifts from “Santa” and we enjoyed being surprised.

    But that eventually involved the uncomfortable instruction to not tell other children about who Santa ‘really’ was. It put us, as children, in the position of lying by omission. And it put my parents in the position of telling us to lie. So, Michele is again correct that there are socially acceptable conventions to be considered and the child’s age has a lot to do with deciding how to handle them.

    Lie to your children or tell them they might need to lie to their friends for social reasons? Not tell your children of your beliefs and take the risk they’ll be influenced by others’ beliefs without the benefit of knowing what the people they trust the most think… and why?

    For example, even though you’ve never treated your children with acupuncture and told them it works, have you told them it doesn’t work? Are you going to leave it up to them to find out on their own? At what age do you tell them what you believe about what happens (or doesn’t) when someone dies?

    I’m actually having a bit of trouble believing your children never asked you directly about these sort of things. Of course it’s purely anecdotal, but I’ve not yet met a child who didn’t ask about Santa Claus, the Easter Bunny, and death at some point before puberty. Then again, I’ve never yet heard one ask about acupuncture, so I suppose I lead a sheltered life. :-)

  20. DugganSC says:

    Arguably, the use of CAM in minor cases like this isn’t much different than the “take two aspirin and call me in the morning” routine one gets at most doctor’s offices when coming in with mild ailments or most medical prescriptions for colic (as documented on an earlier entry on the blog, most of the treatments take a few weeks to work. Colic goes away on its own within a few weeks). I suppose that one could take the high road of truth and, rather than offer one of these solutions, just tell the patient that they’ve wasted $15 of co-pay, additional cost to the insurance companies that will increase their premiums, and the doctor’s time for a minor ailment that will go away on its own. Still, most doctors prescribe something rather than send a patient away thinking that the doctor did nothing for them.

  21. Harriet Hall says:

    @DugganSC,
    “most doctors prescribe something rather than send a patient away thinking that the doctor did nothing for them.”
    The token prescription is arguably unethical and is a problem that could be at least partially solved with more education and more time per appointment. When I was in practice, I found that many patients appreciated being told no treatment was necessary. “Oh, thanks, Doc. I’d really rather not take pills unless it’s necessary. I just wanted to make sure my cold symptoms weren’t a sign of something worse that might need treatment, like pneumonia.”

  22. gziomek says:

    I wish I could have been there when Braco discovered his powers.

    “stop staring at me, Braco…oh, wait. hang on…”

  23. BillyJoe says:

    Donna,

    Why I do believe you have it in for me. :)

    I asked for an anecdote to illustrate her point, not as evidence.
    I hope you understand the difference.

    regards,
    BillyJoe

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