I practice in a university clinic which functions partly as a tertiary referral center, which means we get referrals from other specialists. I also get many referrals for second opinions. Sometimes the entire cause for the patient’s desire for a second opinion, it seems to me, is the simple fact that they did not understand the reasoning of the previous specialist. They were given a diagnosis and a course of treatment, but not an explanation of how their doctor arrived at those conclusions.
I am not being judgmental – different practices are under different pressures and time constraints, and it can be very difficult to gauge a patient’s understanding. Often the physician and the patient are proceeding based upon differing assumptions and narratives that are not expressly stated. The doctor may think they have explained the situation entirely, but simply did not confront misleading assumptions they were not aware their patient had.
This is part of the advantage of engaging the public about health issues and confronting pseudoscience, myths, and misconceptions – you develop a deep awareness of how the general public thinks about medicine.
Electrodermal testing is a bogus procedure where measurements of skin conductance with a biofeedback device are entered into a computer to diagnose nonexistent health problems and “energy imbalances” and to recommend treatments for them, often involving the sale of homeopathic remedies and other useless products. It falls under the general category of EAV (Electro Acupuncture of Voll). The history and variants of EAV are explained in an article on Quackwatch.
I’ve written about electrodermal testing before. I’ve explained how it amounts to fooling patients with a computerized Magic 8 Ball and I’ve discussed the legal and regulatory issues.
Now Stephen Barrett (founder of Quackwatch and Vice-President of the Institute for Science in Medicine) has written an article in FACT (Focus on Alternative and Complementary Therapies) entitled “Bogus electrodermal testing devices: where are the regulators?” He points out that existing regulations are sufficient to ban these devices, but that regulators have failed to take appropriate action.
It’s no secret that I happen to be on several mailing lists of groups or doctors whose dedication to science is—shall we say?—questionable. Of course, the reason I join such mailing lists is to keep my finger on the pulse of pseudoscience, so to speak. Between such lists and strategically selected Google Alerts (the latter of which appear to be failing me these days), I’m usually aware of potential blogging material fast on selected topics that have become my bailiwick on this blog. So it was that I became aware on Saturday of a development regarding the movie about Stanislaw Burzynski that was going to be released direct to DVD this week.
I wrote about this “documentary” a couple of weeks ago, because it had become pretty clear that a significant part of the movie will be dedicated to a PR counterattack (more like a smear job) on skeptics who have been critical of Burzynski, criticism that apparently goaded him to use a rather unhinged individual by the name of Marc Stephens to threaten skeptical bloggers who had written posts critical of Burzynski’s science (more appropriately, his lack of science), and his proclivity for charging patients huge amounts of money to be in clinical trials, a practice that is in general considered at best questionable. The brouhaha in the blogosphere led me to pay attention to Burzynski in a way that I hadn’t before. Sure, I had heard of him, but I hadn’t really delved deeply into his claims. That situation was rectified in late 2011, as I reviewed the first propaganda movie made about Burzynski by Eric Merola, Burzynski The Movie: Cancer Is Serious Business. As I delved deeper, I learned that Burzynski’s evidence for the anticancer efficacy of his “antineoplaston therapy” doesn’t hold up; that his “personalized gene-targeted cancer therapy” is anything but personalized or gene-targeted; and that he’s using an orphan drug now in what appears to me to be a strategy to bypass restrictions on his use of antineoplastons that he agreed to in a consent agreement with the Texas Attorney General back in 1998 that allow him only to use these drugs as part of a valid clinical trial.
So I awaited the approach of this week with a mixture of anticipation and trepidation; anticipation because I wanted to see what sort of bizarre new conspiracy theories (or new twists on old conspiracy theories) that Merola could weave, and trepidation because I don’t know how badly Merola will trash me (and people I know) in his movie and such attacks could cause me difficulties. Suffice to say, it looked very much as though Merola was going to resurrect Jake Crosby’s scurrilous attacks against me from three years ago. So it was with great surprise that I read this e-mail on Saturday morning, sent to the Burzynski Movie mailing list:
As a pediatrician caring for hospitalized children, I deal with fear on a daily basis. My day is saturated with it. I encounter fear in a variety of presentations, with parental fear the most obvious but probably least impactful on my management decisions. I do spend a lot of time and mental energy calming the fears of others but more managing my own, both struggling to prevent it from biasing my thought process and harnessing it as a productive motivational force. I devote a significant amount of effort towards teaching residents and students the practice of inpatient pediatric medicine and fear can be a valuable teaching tool when used appropriately.
So I admit that I take advantage of fear to a certain extent in my practice. Most pediatricians do. Maybe we all do. Proper informed consent, for instance, must include potential poor health outcomes related to medical intervention or the refusal of them. I accept that fear is an impetus for seeking medical care. Parents should be afraid of poor health outcomes from vaccine-preventable illnesses, for example. They should be made aware of the repercussions of poor adherence to home asthma management or of not placing their child in a proper car seat every time they put them in a car. Fear can serve the greater good.
But there is a difference between these unavoidable aspects of science-based medical care and the abuse of fear by practitioners of irregular medicine.
Why take a drug, herb or any other supplement? It’s usually because we believe the substance will do something desirable, and that we’re doing more good than harm. To be truly rational we’d carefully evaluate the expected risks and benefits, estimate the overall odds of a good outcome, and then make a decision that would weigh these factors against any costs (if relevant) to make a conclusion about value for money. But having the best available information at the time we make a decision can still mean decisions turn out to be bad ones: It can be that all relevant data isn’t made available, or it can be that new, unexpected information emerges later to change our evaluation. (Donald Rumsfeld might call them “known unknowns.”)
As unknowns become knowns, risk and benefit perspectives change. Clinical trials give a hint, but don’t tell the full safety and efficacy story. Over time, and with wider use, the true risk-benefit perspective becomes more clear, especially when large databases can be used to study effects in large populations. Epidemiology can be a powerful tool for finding unexpected consequences of treatments. But epidemiologic studies can also frustrate because they rarely determine causal relationships. That’s why I’ve been following the evolving evidence about calcium supplements with interest. Calcium supplements are taken by almost 1 in 5 women, second only to multivitamins as the most popular supplement. When you look at all supplements that contain calcium, a remarkable 43% of the (U.S.) population consumes a supplement with calcium as an ingredient. As a single-ingredient supplement, calcium is almost always taken for bone health, based on continued public health messages that our dietary intake is likely insufficient, putting women (rarely men) at risk of osteoporosis and subsequent fractures. This messaging is backed by a number of studies that have concluded that calcium supplements can reduce bone loss and the risk of fractures. Calcium has an impressive health halo, and supplement marketers and pharmaceutical companies have responded. There are pills, liquids, and even tasty chewy caramel squares embedded with calcium. It’s also fortified in foods like orange juice. Supplements are often taken as “insurance” against perceived or real dietary shortfalls, and it’s easy and convenient to take a calcium supplement daily, often driven by the perception that more is better. Few may think that there is any risk to calcium supplements. But there are now multiple safety signals that these products do have risks. And that’s cause for concern. (more…)
“I intend to live forever. So far, so good.”
- Steven Wright
The humor in many of comedian Steven Wright’s famous one-liners is that they are simultaneously familiar and absurd. At some level we all know that we are going to die, but as long as we are still alive (or a loved-one is alive) we can cling to the irrational hope, the impossible denial, that death remains a distant abstract concept, not an near inevitability.
We all need to come to terms with death in our own private way, but often those terms are not private because they drive our use (for ourselves or others) of increasingly expensive health care. Two essays over the last year by doctors explored this issue, noting that when doctors face their own mortality they often make different health care decisions for themselves than the general public.
In February of 2012, Dr. Ken Murray wrote an essay in The Wall Street Journal – Why Doctors Die Differently. His primary thesis was that doctors choose less end-of-life care for themselves than the average patient. They do so largely because they are intimately familiar with the futility of much of what we do for patients who are likely going to die anyway. As one example, CPR has a success rate of about 8%, with only 3% of people receiving it going on to have a near-normal quality of life. Those numbers are pretty grim. Meanwhile, TV depictions of CPR are successful 75% of the time with 67% returning to normal life. Sometimes the person wakes up during the CPR, is fine, and then goes on to thwart a terrorist attack without missing a beat.
Many SBM readers will remember the late, great Barry Beyerstein, a luminary of the skeptical movement and author of a classic article that has been cited many times on SBM, an explanation of why bogus therapies seem to work.
One of his greatest personal accomplishments is not as well known: he produced an exceptional daughter, Lindsay Beyerstein, a freelance writer, philosopher, and polymath who stepped into her father’s shoes as a faculty member of the annual Skeptic’s Toolbox workshop after his death and has done a truly admirable job there.
Among Lindsay’s many other activities, she works for the Sidney Hillman Foundation, a nonprofit that honors excellence in socially conscious journalism. One of her goals has been to reward excellence in science journalism. Bob Ortega has just received a Sidney Award for his exposé of a widely used HPV (human papillomavirus) test that is not FDA approved and has an unacceptably high rate of false negative results. Her interview with him was published on the Hillman Foundation website. On SBM, we frequently criticize journalists who get the science wrong. For a change, I’d like to congratulate Mr. Ortega for not only getting the science right, but for accomplishing something that could potentially save lives.
That the myth that vaccines cause autism is indeed nothing more than a myth, a phantom, a delusion unsupported by science is no longer in doubt. In fact, it’s been many years now since it was last taken seriously by real scientists and physicians, as opposed to crank scientists and physicians, who are still selling the myth. Thanks to them, and a dedicated cadre of antivaccine activists, the myth is like Jason Voorhees, Michael Myers, or Freddy Krueger at the end of one of their slasher flicks. The slasher or monster appears to be dead, but we know that he isn’t because we know that he’ll eventually return in another movie to kill and terrorize a new batch of unlucky and invariably not so bright teenagers. And he always does, eventually.
Unfortunately, the myth has a price, and autistic children pay it when they are unlucky enough to have parents who have latched on to this particular myth as an explanation for why their child is autistic. One price is blame. Parents who come to believe the myth that vaccines cause autism also express extreme guilt that they “did this” to their children, that it’s their fault that their children are autistic. At the same time, they have people and entities to blame: Paul Offit, big pharma, the FDA, the scientific community, pediatricians. As a result, the second price is paid: Their children are subjected to pure quackery, such as “stem cell” injections (which almost certainly aren’t actually stem cells, given the provenance of the clinics that offer such “therapies”) into their cerebrospinal fluid, and what in essence constitutes unethical human experimentation at the hands of “autism biomed” quacks. Meanwhile these same quacks reap the financial benefits of this belief by offering a cornucopia of treatments to “recover” autistic children that range from the ineffective and usually harmless (such as homeopathy) to the ineffective and downright dangerous (dubious “stem cell” injections by lumbar puncture into a child’s cerebrospinal fluid). These treatments drain the parents’ pocketbook and do nothing other than potential harm to the children. These prices are intertwined, and just last week I saw examples of both prices on full display at various antivaccine blogs. Worse, the concept appears to be metastasizing beyond vaccines. As more and more scientific evidence fails to find even a whiff of a hint of a correlation between vaccines and autism, the One True Cause of Autism, which was once vaccines or mercury in vaccines, has become the Many True Causes of Autism, in which vaccines (it’s always the vaccines) mix with pharmaceuticals, pollution, diet, and chemicals to produce autism in a manner that is a lot harder to falsify than the older, all too scientifically testable hypothesis that vaccines cause autism.
As this is published I am finishing the last day of a 12 day stretch covering my partner while he is off trying to get MDRTB and typhoid fever. He is in India. I may have to autoclave him when he returns before I let him in the hospital. Double the work means double the fun, but free time goes down by the power. Same thing happens with the kids. If you have two kids, the work squares, three kids, the work cubes. A linear change in one domain leads to exponential change in other domains. I am sure that phenomena has a name that one of our readers will know.
I lack the mad typing skills of other contributors and it usually takes me at least a week to carefully construct the spelling errors and grammatical faux paux for which I am justly famous. And then I have to come up with content to surround the faulty English. This week I have little time and so a ‘fun’ post.
When I make rounds it is not unusual for people to ask questions about their health and their family. I learned long ago to ask why they want an answer to a particular question so I do not inadvertently offend a colleague. When I offend I like to be advertent. Years ago I was asked what I thought of hyperbaric oxygen, and I replied that it is great for the bends but otherwise mostly serves to enrich the hyperbaric doctors. Why do you ask? I am the new director of the hyperbaric program, was the reply. Open mouth and insert foot.
So recently a nurse asked me if duct tape would remove warts. Wary, I asked why, and she showed me a huge wart on her hand. I have used duct tape for many purposes; few home repairs cannot be (temporarily) accomplished with duct tape. But treating warts? Do you use the tape as a way to yank the wart out by its roots? Got me. I gave my best Gallic shrug and went looking for information. (more…)
I wore a T-shirt at The Amazing Meeting 2012 that generated a lot of controversy. You can see a picture of it on my Wikipedia article. I didn’t want to talk about the T-shirt, but I’ve been repeatedly challenged to explain myself, and I’m afraid I can no longer avoid it. Steven Novella has recommended that we try to give other people’s arguments the most charitable interpretation. I hope my critics will do that, but I’m not optimistic. If past experience is any guide, they will misinterpret my explanation and put it in the worst possible light, which is why I haven’t offered it before. So be it; I have a tough skin. Once this T-shirt explanation is out of the way, I will have done my duty and had my say and will feel free to ignore all these divisive and nonproductive arguments. I don’t plan to write about gender or feminism or the squabbles in the skeptic movement again.
First, a brief digression about charitable interpretations and the whole “queer” discussion. I said “most” people in the LGBT community find the term offensive. Instead of attacking me as totally clueless, a charitable reader might have gently corrected me by providing quantitative evidence that the majority of people in the LGBT community do not find the word offensive (so far, no one has provided such evidence). When shown quantitative evidence, I would gladly have changed the word “most” to “many” or “some” or even “a few,” depending on the actual numbers, and we would all have learned something. What actually happened served as a perfect illustration of the points I made in my “Enemies” article. The ensuing discussion was bizarre, nit-picking, surreal, divisive, unproductive, and failed to emphasize the one thing we ought to all agree on: we don’t want to use labels that others find offensive. The silly quibbling about my use of the one word “most” just derailed the discussion from the more important issues, and from all the other words in my post.
To set the scene for the T-shirt incident, there was a complex backstory involving Elevatorgate, Richards Dawkins, insults and threats directed at women, a perception that TAM’s anti-harassment policy was not being enforced, objections to a statement JREF President DJ Grothe made, accusations that Grothe had lied about reports of harassment, and numerous other incidents, many of which were blown way out of proportion. All this had left big chips firmly glued to shoulders. (more…)