“Alternative Medicine” isn’t

I am not Orac (though at times I wish I had his flair and his work ethic). My involvement in medicine can be accurately described as “tangential”, at least insofar as it comes to my career. That being said, I’m interested in the decisions we make when the stakes are high, and they don’t get much higher than the life and death circumstances we find ourselves in when talking about our health. As a result, I am acutely interested in the discussion around “alternative” medicines.

Alternative medicine, of course, is a propaganda phrase used to describe “treatments” that lie outside of the accepted norms for medicine. It is applied with equal gusto to completely sensible and useful things like modifying diet and exercise; things that seem like they might work but are a little out there like acupuncture and chiropractic; and to things that don’t make any sense and are completely batshit insane like homeopathy or energy healing (although, to be sure, there are way crazier things out there). The problem with such a… shall we say… flexibile definition of “alternative”, is that when someone points out that acupuncture doesn’t work, or that “energy healing” is the same fakery that faith healers exploit, people jump on them and say that they’re against anything that is “natural”.

That’s a distortion of the skeptical position that is so outrageous that it borders on being a lie. Large mainstream science-based organizations like Health Canada and the World Health Organization whole-heartedly endorse the use of diet and exercise modification to reduce the risk of heart disease, diabetes, stroke, and any number of other chronic and acute conditions. Herbal remedies are refined and turned into powerful pharmaceuticals (Aspirin is a commonly-invoked example of such a refinement). Things like yoga, massage, and other types of relaxation therapy are often recommended to reduce stress which can underly a number of health problems. Skeptics are happy to accept something so long as it works. We don’t care if it’s “alternative” or not.

These “alternative medicines” are not alternative in any way – if they work, then they aren’t alternative, they’re just medicine. The other side of the problem is the ones that are truly “alternative” aren’t medicine! They don’t work any better than voodoo or augury or invoking ancestor’s spirits. This wouldn’t be so problematic, except that they still do cause side-effects:

Giving alternative treatments such as homeopathic remedies instead of conventional medicines to children may have deadly side-effects in rare instances, a new analysis says. Australian researchers monitored reports from pediatricians in Australia from 2001 to 2003 looking for suspected side-effects from alternative medicines like herbal treatments, vitamin supplements or naturopathic pills. They found 39 reports of side-effects including four deaths.

Real medicine is regulated, monitored for safety, and must pass through a strict certification process to reach market. Nobody would claim that the process is perfect – some real stinkers get through – but they get caught. All some quack has to do is slap the label “alternative” on her product, and she gets off scot free. This poses a real threat – herbs and supplements are biochemically active substances that have real effects in the body. The liver doesn’t care if something is “natural” or not – it still breaks it down. The metabolites of any substance that enters the body can exert real effects, particularly if they are used in conjunction with pharmaceuticals.

But what about things like reiki or homeopathy? Surely these things that exert no actual effect on the body (above the often-misunderstood placebo effect) don’t cause the liver to do anything. What possible side-effects could they cause?

The answer is that people will often forego real treatments in favour of these so-called “alternative” approaches:

In 30 cases, the issues were “probably or definitely” related to complementary medicine, and in 17 the patient was regarded as being harmed by a failure to use conventional medicine. The report says that all four deaths resulted from a failure to use conventional medicine.

One death involved an eight-month-old baby admitted to hospital “with malnutrition and septic shock following naturopathic treatment with a rice milk diet from the age of three months for ‘congestion'”. “Another death involved a 10-month-old infant who presented with septic shock following treatment with homeopathic medicines and dietary restriction for chronic eczema,” the authors say.

One child had multiple seizures after complementary and alternative medicines (CAMs) were used instead of anti-seizure drugs due to concerns about potential side effects. The fourth death was of a child who needed blood-clotting drugs but was given complementary medicine instead.

These people proceeded in defiance of medical advice to give useless products to children with real health problems. Adults do this to themselves too. It’s not because they didn’t know or weren’t told, it’s because they believed in the lie that is the phrase “alternative medicine”. I can’t put too strong a point on this: “alternative medicine” isn’t alternative, and it isn’t medicine. The stuff that works is just medicine, and the stuff that doesn’t work is nothing other than voodoo.

I have friends who are voodoo practitioners. A woman I did my undergraduate with is training to be a chiropractor (much to the face-palming chagrin of the rest of our class); two of my close companions here in Vancouver use acupuncture as part of their otherwise science-based rehabilitative toolkit; another friend is into “energy work”, whatever that means. This is not an abstract concept to me, nor should it be to you. If you buy into the idea that there is such a thing as “alternative medicine”, you’re helping contribute to the climate that puts completely decent things like healthy lifestyle factors in the same category as crystals and “psychic surgery”.

There is no “alternative medicine” – there’s just medicine and bullshit.

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‘Tis the season… to shove it in their faces!

Cross-posted from Canadian Atheist, in direct (and repeated) violation of the unofficial policy prohibiting such things.

This one will brief, since Hemant over at Friendly Atheist has already given us all the relevant information:

The Atheism subReddit has taken up the cause to raise $42,000 for Doctors without Borders — the amount is an homage to Douglas Adams.

This is a friendly competition with the members of the Christianity subReddit, who are donating to the World Vision Clean Water Fund. Much like with Kiva, we’re crushing them with our generosity :) (I should’ve pointed out that this is hardly a fair fight because the Atheism subReddit outnumbers the Christian subReddit by a longshot. There’s waaaaay more of us. So the “competition” is all in good fun. Still, Christians are more than welcome to try to beat us :) )

As I write this, the atheists have already raised $30,000. The Christians have raised a little over $10,000.

Let’s help the atheists reach their goal (and, as a bonus, give more than the Christians).

If you’re in the U.K., you can give here.

If you’re in America (or elsewhere), you can give here.

I just gave $10. What are you donating?

Personally I think this is an awesome idea. Despite being at odds with a large segment of the atheist community with my stance toward religion, I think this is the kind of collaboration and friendly rivalry that the “accommodationists” are talking about most of the time. I’m happy to channel some of my vitriol (and one night out’s worth of cash – I donated $50) into a cause that sees real and positive results for someone else on the planet.

So atheists, put down your deep-fried baby sandwiches, click on the link, and cough up whatever dough you can spare to finally destroy Christianity once and for all! Or, get a poor kid some medicine. Whatever lifts your luggage. Christians, you can donate here.

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Do me a favour?

I have heard that Ms. Tinkham has died of her cancer as of 3:30 pm PST. I am deeply saddened by this, more so because this death was, in all probability, preventable.

I enjoy blogging, I really do. However, sometimes it’s a struggle to find the inspirado to write. Since I started this for serious back in March, I’ve posted at least one new story every morning at 6 am (Vancouver time). Mondays I have reached deep into my psyche and pulled out a completely organic essay (what I’ve taken to privately referring to as my “think pieces”), and Fridays I have scoured the interwebs to find you a pithy or humorous video to entertain you.

I have yet to miss an update (I came perilously close this past Friday, but I still got it out).

I love blogging, but on those days when I just don’t feel like writing, I am spurred on by the thought that somewhere out there in the world, there is someone (maybe even a few someones) who read these things and get something from them. Maybe it’s just mindless entertainment as part of your morning routine, maybe it means something more than that; regardless, the thought of you going “where the fuck is today’s article?” is what chains my ass to the desk and gets my fingers a-typin’.

I say all this because the time has come for me to ask a favour from you. Over at Respectful Insolence, Orac has put out this plea:

I’m still perturbed that a cancer quack was able to convince a woman who had everything to live for that he could cure her of her breast cancer without surgery, chemotherapy, or radiation. I’m still perturbed at this particular cancer quack’s attitude, where he tried to claim that he didn’t know the woman who is dying, Kim Tinkham, and imply that her cancer recurred because didn’t follow his regimen carefully enough, that she had stopped living the quack’s “alkaline diet.” I thought of my mother-in-law, who died in 2009 of metastatic breast cancer, and watching her decline.

And then I thought of Oprah Winfrey and her role in what ultimately happened to Kim Tinkham.

…

Oprah needs to know what can happen when people choose quackery and woo instead of effective science-based medicine.

Because I know how hard Orac works to get his lengthy and in-depth analyses of science-based medicine and medical skepticism out there, I was happy to contribute my voice to what I hope is a chorus of people saying the same thing: people who give bad advice about medicine have to live with the consequences of their words. This Kim Tinkham woman was told that cancer was an “acid” that was caused by feelings of resentment – a steamier pile of bullshit there has never been. Based on this faulty premise, the exposure and publicity that she got on the Oprah show, and Oprah’s whole-hearted endorsement of nonsense like The Secret, Ms. Tinkham eschewed conventional treatment and attempted to “alkalize” her body to get rid of cancer.

To be sure, with a stage III cancer she had roughly 50% odds of succumbing to the disease even with conventional treatment. However, that is a full 50% better chance than if she just slowly lets the cancer kill her. If we found some other treatment that improved your odds of surviving cancer by 50%, we’d be trumpeting it from the skies. Ms. Tinkham, with encouragement from Oprah, decided to opt instead for witch-doctor treatment from a quack who thinks that cancer is made up of acid. I have, with my own two eyes, seen a cancerous tumour – it looks nothing at all like acid. Furthermore, I have seen positive, happy, well-balanced people die of cancer – to suggest that it’s their own fault for having too much “resentment” is a disgusting insult to anyone who has seen a loved one die of cancer.

And so I am asking you, my dear readers, for whom I work so hard to provide regular (and hopefully interesting) content 5 days a week, to do me this favour: please write in to the Oprah show and tell them that it’s not okay to encourage vulnerable sick people to slowly commit suicide under the “care” of people who would exploit them first, then blame them later when their voodoo “cures” don’t work.

Please also feel free to copy and paste your submission to Oprah in the comments section.

Like this article? Write in to the Oprah Show then, dammit!

P.S. WordPress helpfully tracks the number of clicks the links that I post yield, so if you read this and don’t write the show, I’ll know.

“How do you know that?” – the ultimate nullifier

In Marvel comics, there is a device known as “The Ultimate Nullifier” –  a weapon that is apparently capable of utterly destroying any target the user chooses, as well as the user her/himself if her/his mind is not sufficiently focussed (those of you who don’t read comics will probably find this idea a bit ridiculous; those of you who do read comics will think it’s not ridiculous enough).

Back in July, Vancouver was visited by PZ Myers, author of one of my favourite science and atheism blogs, Pharyngula. During his talk, PZ brought up the role of skepticism in evaluating any claims about the world, particularly religious ones, and invited us to ask an important question when facing a claim that you’re not sure about: “how do you know that?” This question is, within the realm of science, the ultimate nullifier… of sorts.

Let’s pretend I have a friend who is really into reiki – a form of Japanese faith healing. She tells me that she can heal my diseases by passing her hands over me and directing positive energy into my body. I, of course, am skeptical – probably more so than I would be if she had told me that she was going to massage away my stress or something that at least has a biologically plausible mechanism. And so I ask her “how do you know that?”

She tells me about chakras and meridian lines and The Goddess Breath Method (those of you who aren’t familiar with “alternative therapies” will probably find this idea a bit ridiculous; those of you who are familiar with this kind of woo will think it’s not ridiculous enough). She tells me that by directing energy into my chakras that I will rebalance my energy flows and expel the foreign energy that causes my dis-ease (yes, they actually do spell it like this). I’ve studied human anatomy, and there ain’t nothing like a “chakra” or a “meridian line” anywhere to be found. And so I ask her “how do you know that?”

She shows me a bunch of websites and testimonials from the millions of patients who have been treated with reiki. As an epidemiologist, I point out that showing the numerator without the denominator is useless – how many people were treated and didn’t get better? Is it an equivalent number? Is it less? Is it more? Surely there are “dis-eases” that resolve themselves on their own – how does she know that people aren’t just responding to a sham treatment because they believe in it?

As we go father down, I learn that every time someone takes a controlled look at reiki (or acupuncture, homeopathy, intercessory prayer, rolfing, crystals, psychic surgery, or distance healing), they find no reason to support my friend’s claim that it will heal anything. The few studies that do suggest that it works either have a small sample size, lack proper blinding, or have no control group – common ways of finding effects that aren’t actually real. Basically, her claim of magic healing powers is based on nothing but personal belief and junk science – not exactly what I want when I’m in serious medical trouble.

There is a limitation to this question, however. Many people like Deepak Chopra and Ray Comfort abuse the word “know”, taking it to mean “believe very strongly”. They insist that science isn’t the only “way of knowing”, and that human intuition or divine revelation (sometimes through scripture) are just as good as science at determining reality. There’s certainly an appeal to this kind of statement – after all it is pretty arrogant of scientists to claim that theirs is the only version of the truth.

The problem with this kind of reasoning is that, if it were true, we’d see far more overlap between intuition, revelation and science. Revealed wisdom (for example), when tested through observation, would consistently give similar results to those determined according to non-revealed scientific “wisdom”. It would certainly be at least internally consistent – many different groups of people would achieve similar insights, and have overlapping revelations. However what we see instead are diverse groups claiming to have “truth”, but having very different versions of it.

A better question, perhaps, is “why should I believe you?” Ray Comfort is free to assert (without evidence) that he knows that Jesus is the supreme being who watches and judges mankind (but not other animals). Why should I believe that just on his say-so? To avoid everlasting torment? Maybe, but that threat is really only credible if I believe him already – if I reject his imaginary friend then I most certainly reject the punishment that imaginary friend has in store for me. Why should I believe Ray more than my Hindu neighbour down the street – both can point to ancient holy books, miracles, millions of followers; what makes Ray’s “truth” more true than Raj’s?

All claims should be held to an external standard – some kind of way of measuring them against observed reality. It doesn’t matter if they’re claims about magic energy healing or invisible sky genies or political theories – if they aren’t borne out by some kind of controlled, observable evidence, then they’re just statements of belief. It’s fine to have beliefs (I think it’s preferable to have ideas, but whatever), but a statement of a belief is nothing more useful than a personal preference. I think that Radiohead peaked with OK, Computer; my buddy Stu thinks that they’ve gotten steadily better after that – they’re just statements of belief.

Saying that I believe in chakras doesn’t make it any more true than if I say I believe in phrenology or caloric theory or the four elements of matter. Saying that I believe it so much that I know it certainly doesn’t change that. My believing in it doesn’t grant it some kind of legitimacy – it just makes it harder to give me actual medicine.

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An atypical side-note

I don’t talk about my job on this blog, and today will be no exception. However, I am (as reported on the sidebar) a scientist who works in the medical field (kinda). As such, I feel it appropriate to comment on this story I saw in the news:

Doctors have sharply cut some financial ties to drug companies, thanks to increased scrutiny about relationships that critics allege improperly influence medical treatment, a survey suggests. The biggest change occurred in the number of doctors who accept drug company money for attending medical meetings, including covering travel to sometimes exotic locations. That fell from 35 per cent in 2004 to 18 per cent in last year, the survey found.

There is a near-constant din that comes from advocates of alt-med that medical doctors are “in the pocket of Big Pharma”, and that anyone who advocates science and opposes superstitious nonsense must be getting paid for their position. Anyone who has been to my apartment or seen the way I dress will be able to attest that if I get money from Big Pharma, it’s not enough (full disclosure: my employer does receive research money from pharmaceutical companies, under contracts that strictly bar those companies from interfering with our research in any way. I have not personally received a cent from any corporate interest).

I will give the alt-med crowd one accolade to hang their hat on – they changed the conversation. It used to be the case that doctors were very much in bed with the pharmaceutical companies, and it was repeated and consistent criticism of this practice that led to findings like the one above. It was a legitimate criticism of a shady practice, and it forced regulators to police the kinds of remuneration that physicians were allowed to (or felt entitled to) accept. This didn’t happen spontaneously; many doctors initially denied that the gifts exerted any influence over them whatsoever. Of course the evidence suggested otherwise.

It’s good to see when a small group of people can raise public consciousness about a serious ethical issue and see meaningful results. I applaud the alt-med crowd for a job well done, and look forward to the day when my merry band of skeptics can return the favour and stop the egregious abuses of trust that alt-med practitioners are allowed to get away with every day.

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Vancouver vultures circling for cash

Hello readers, I’m Crommunist. I’m not a witch. I’m not anything you’ve heard. I’m you!

No, actually I’m not you. I’m me. But none of that is important, because I can predict the motherfucking future. You may remember back in April of this year I talked about the so-called “liberation therapy” for Multiple Sclerosis (MS). In that post, I said this:

When you’re sick, you have only one goal: getting better. Millions of years of evolution have hard-wired a strong survival instinct into all living species, and human beings are no exception. People suffering from disease and their families are willing to do just about anything for a chance at recovery, and logic plays nearly no role in the decision-making process. The problem with this is that people suspend their disbelief and are willing to jump at any chance, no matter how remote, unlikely, or unproven.

When the stakes are high, we will abandon logic and chase after whatever seems right – putting rational thought to one side in favour of quick and dirty heuristics. It’s why the Republican party is so adept at getting votes – they stoke the fears of the populace (the Muslims are coming to get us with their socialist Obamacare!) to shut down the critical thinking part of the brain (the part that notices that Republicans are bad on security, bad on the economy, bad on individual freedoms, bad on pretty much any measure you can think of). Once critical thinking has ceased, your lizard brain takes over and you make decisions based not on evidence or critical thinking, but on gut reactions (blame illegal immigrants!)

The sudden popularity of the new treatment has prompted Jeff Donegan of Chilliwack, B.C., to sign up to get the therapy through another company in California. “When [liberation therapy] first came out, I was very skeptical,” said Donegan, 31. But five years of constant nerve pain, blindness in one eye and severe fatigue have been a nightmare, he said. “Every day is different,” he said. “I don’t know what I’m going to wake up to.”

The stakes could not possibly be higher when you have a debilitating, degenerative disease. And like the Republicans, there will always be those who are willing to put ethics and common decency aside for the sake of profit:

A Vancouver-based medical tourism company is cashing in on the reluctance by many provincial governments to fund a controversial therapy to treat multiple sclerosis. Passport Medical has arranged for foreign treatment using so-called liberation therapy for more than 350 MS sufferers from all over North America, said company owner Mark Semple. The company’s two-week trips include surgery and recovery care in Costa Rica for about $13,000.

Semple said the outcome for many of the patients is encouraging. “Some of the things I’ve seen could only be described as miracles,” he said. “Is it a cure? No. Is there a vascular component of the disease? I can only say yes.”

Safety regulations got you down? Is The Man telling you that you can’t have this experimental surgery that has no proven efficacy and will likely as not do nothing to alleviate your illness? Got 13 grand to spare? Fuck it then, give me your money, I’ll send you to a place that has no safety regulations. You’ll come back $13,000 poorer, and no better off than you were before (for all we know). Also note the complete lack of confidence on the part of the owner, who admits it’s not a cure. He likens it to a miracle – not a good thing when you’re talking about a medical procedure. You don’t want miracles in science, you want regularly-occurring phenomena that can be predicted and replicated. If it’s ‘miraculous’, you’re probably looking at the placebo effect.

But yes, I called it in April, and it’s happening now. People are flocking to Costa Rica to get surgery, paying ridiculous sums for it, and Mark Semple is laughing all the way to the bank.

I’m you!

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The real Doctor Evil

Stuff like this chills me to the bone:

A doctor struck off by the General Medical Council for exploiting people with multiple sclerosis could be facing legal action by patients. A firm of solicitors said hundreds of “vulnerable people” who travelled to the Netherlands for treatment may seek compensation. Dr Robert Trossel treated them at his clinic in Rotterdam, following initial assessments in the UK. He charged thousands of pounds for unproven stem cell treatments.

I take heat from friends, from colleagues, and especially from my nemesis for my stance that sometimes the patient is the person who is the least equipped to make the decision about his/her health care. The reply inevitably comes that “people have a right to make their own health care decisions,” or that “scientific orthodoxy” is dangerous so we shouldn’t trust the evidence. I even field regular criticism from friends that think that we should be allowed to pursue unproven medical techniques (or even those that have been shown not to work) because it might benefit some people (either through placebo or through some kind of individualized magic powers that therapies supposedly have that isn’t detectable through clinical trials).

I offer this case study as an example of why I hold the position that I do, and am happy to defend it without shame. This doctor abused and perverted the trust that his patients placed in him as a caregiver, and used it to perform illegal experiments on them. The reason he was able to do it is because he led them to believe that his ‘treatment’ was going to help them recover from multiple sclerosis – a disease that can paralyze you and take away your autonomy. It is no small wonder to me that people would be willing to do just about anything to obtain relief from a disease like this, even if it’s something that is simultaneously expensive and risky.

As before, I am dismayed that I didn’t pay more attention in English class, or that I’ve largely ignored the vast bodies of literature in the English language, because I find myself at a loss to adequately put my disgust for this kind of predatory and exploitative fraud into words. The kind of callous disregard for the obligation that a health care provider has toward their patients, and for human decency in general, that this doctor has exhibited shocks me to my very core. He drew thousands of dollars from people based on a combination of their trust and desperation for a cure. These are dollars that these people could have used to get home care, or travel, or invest in real research, that have instead been wasted because Mr. Trossel (a doctor no longer) thought that he was above petty concerns like clinical equipoise or biomedical ethics.

It’s for this same reason that I am opposed to expediting the research process for this so-called “liberation therapy” proposed earlier this year. While I am hopeful that the procedure works, my optimism is tempered with a healthy amount of skepticism, precisely because the support for it is emotional rather than rational. This is why we have channels through which research must go – to avoid tragedies of the type perpetrated by this vulture.

After a fleeting improvement, Mr Pear’s [a patient who received the experimental procedure] condition has now deteriorated significantly. Mrs Pear said: “When you are sitting in front of a neurologist who is saying ‘look, there is nothing you can do’, you clutch at straws. I am not saying we are the most intelligent people on God’s Earth, but we certainly are not completely stupid.”

It’s almost a shame that there is no god or supernatural force to hold accountable those who would prey on the vulnerable like this. Luckily, we live in a world that has systems in place to provide a measure of justice, and I hope that someday Mr. Trossel comes to realize how evil and heartless his actions were.

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MS Patients demand access to unproven procedure

You may have heard a few months ago that an Italian scientist discovered a promising new method of treating Multiple Sclerosis (MS). It involves inflating a balloon in veins in the neck to alleviate blockages that he (Dr. Zamboni – true story) alleges contribute to the progression of MS. Anyone who has had a family member suffer from this disease knows how horrible the symptoms can be – loss of motor control, paralysis, loss of speech, dysphagia, and others. I first became aware of MS when a close family friend was diagnosed back in the early 1990s. She became wheelchair-bound, could no longer work, and her family life began to fall apart at least partially as a result of her own frustration and anger at the loss of her mobility. It was further dramatized later in one of my favourite TV shows, The West Wing.

Needless to say, MS is a terrifying disease. What makes matters worse is that both the etiology (what causes it) and a viable treatment method have yet to be found. Dr. Zamboni’s work potentially provides answers to both of these questions. It is for this reason that several patients are demanding that the federal government provide access (funding) for afflicted people to seek this treatment:

“While studies in Canada get underway, some patients are travelling overseas, paying for tests and surgery out of their own pocket. Others are lobbying for the Canadian health-care system to cover the diagnostic tests to look for blocked veins in people with MS.

I’m not even going to pretend that I know what it’s like to have a debilitating illness, or that I can do anything besides blandly sympathize with people who are suffering from MS. However, this story highlights an important and seldom-talked-about fact of health care and health policy. Patients should not be the ones calling the shots. We have grown to feel entitled to be in the driver’s seat when it comes to health. Respect for the autonomy and wishes of the patient is paramount in medical ethics, and I have no beef with that. An individual patient’s needs and wishes need to be respected. However, this does not mean that health policy should be decided by sick people.

When you’re sick, you have only one goal: getting better. Millions of years of evolution have hard-wired a strong survival instinct into all living species, and human beings are no exception. People suffering from disease and their families are willing to do just about anything for a chance at recovery, and logic plays nearly no role in the decision-making process. The problem with this is that people suspend their disbelief and are willing to jump at any chance, no matter how remote, unlikely, or unproven. This says nothing of the fact that patients are not nearly as well-informed as they think they are.

Health policy should be guided by evidence, not sentiment. The fact is that this MS procedure has not been tested for efficacy. We don’t know whether or not it actually works, we have only the case reports of one surgeon to rely on. Far be it from me to suggest that Dr. Zamboni is being dishonest, but there is a mechanism for determining “truth” in science, and it comes from systematic appraisal of facts while controlling for alternate explanations, not simply believing what somebody says. The claims about how well this surgery works need to be tested before we give it the green light. This is another reason why patients should not be making these decsions – they can’t dispassionately appraise the evidence and weigh the pros and cons. It’s all ‘pro’ – there’s a chance at life.

“So what?” you might say “anything that gives people hope is better than having no hope at all.” That sounds nice, but it’s frankly untrue. False hope is not superior to honestly confronting reality. False hope carries a double-edged sword: not only will they be devastated when the object of hope doesn’t work, but they will also be out money and time that they could have otherwise used either on efficacious treatment or something else that would enhance their quality of life (travel, time with family, etc.). While it seems draconian and heartless to make decisions without putting patient suffering first and foremost in mind, the results of this process is that the greatest good will be consistently enjoyed by the largest number of people, rather than a scattershot approach that will be wrong as often as it is right.

Not only is it wrong to give false hope, there is a significant risk associated with surgeries, especially new surgeries for which many surgeons are not well-trained. All medicine is performed with a risk/benefit calculation in mind – basically, so long as the incremental benefit justifies the increased risk then the procedure is warranted. Surgery is particularly risky because of the risks of dying on the table, complications following closing, risk of hospital-borne infection, allergies to anesthesia, and others. What makes this particular surgery even more risky is that surgeons don’t have a lot of experience performing it, so the risks of complications and fatality is even higher. Without consistently establishing the size of the procedure’s benefit, it’s completely irresponsible to give patients access to the risk.

It’s also fascinating to me that every time a health governing body decides to push through a relatively new, somewhat untested treatment (like H1N1 or HPV vaccines, to cite a recent example), there is consumer backlash in the form of “we don’t know what the long-term consequences of this thing is, so we shouldn’t do it.” However, in this case, we’re getting backlash toward the health care governing bodies in the form of “you’re not moving fast enough.”

While I deeply sympathize with anyone who has to live with any catastrophic illness, I am firm in my stance that patients should not be the ones calling the shots when it comes to policy and decision-making, especially when it comes to untested interventions. Science takes time, and we will have an answer on this issue soon. In the meantime, it helps nobody to jump at every whiff of a cure, and could end up being far more harmful than we anticipate.

The Placebo Effect

This post originally appeared on Facebook on January 27th, 2010.

Those of you who are not scientists may not be familiar with the term “placebo.” It is often equated in common language with “sugar pills”, or some sort of fake drug that doesn’t do anything. This is a reasonable proxy for what a placebo actually is. In a nutshell, a placebo is something that mimics the outward characteristic of an actual entity while having no real effect. This definition is imprecise, as placebos do have an effect, which is the whole point. The so-called “placebo effect” occurs when someone, believing that the placebo is actually the entity it is mimicking, undergoes some change that is attributed to the placebo, but is actually no more than their own psychosomatism (or naturally-occurring events). The key to this effect is that the person believes that what they are receiving is genuine.
Placebos are most commonly associated with clinical trials for medicines. One group, the experimental group, is given a new drug while the other, the control group, is given a placebo (often either a sugar pill, aspirin, or in the case of intravenous drugs, a saline solution). Once again, it is important to note that the patients (and in high-quality studies, the physicians) are not aware whether they are receiving the medicine or the placebo. Nowadays, placebo trials are less common, since medical ethics require that all patients receive at least the standard treatment that would be available if they weren’t in the trial.

There is a very good reason for doing this. The human mind is incredibly powerful. Sometimes merely the act of believing you’ve been given something that will help causes you to feel better. Indeed, there is marked symptom improvement even in some cases of terminal or chronic painful disease simply due to believing that the “treatment” you’re getting is fixing the problem. Thus, in order to determine concretely what effect, if any, a new treatment has, it is necessary to control for the placebo effect – make sure all patients are experiencing it. Any significant difference seen after the placebo effect has been accounted for is, therefore, a result of the real effects of the treatment.

(I’ve used the word “real” a couple of times here, and I anticipate that the more new-agey of you reading this will object to my co-opting that word for science. When I say “real”, I am using it the metaphysical sense – the real/non-real dichotomy – which states that those things which can be directly observed, measured, etc. are “real” while all other things are non-real. Please note that, although linguistically similar in English, non-real is not the same as “not real”. “Not real” means fictional, imaginary, having no basis in reality; whereas “Non-real” simply means that the concept is not a measurable, physically-based. Admittedly, a lot of things that are “non-real” are also “not real”, but that’s the subject of a different discussion. Think of it this way: unicorn farts are “real” in a metaphysical sense, but “not real” in a “WTF, UNICORNS?” sense.)

What all this means is that the simple act of believing something to be true causes our minds to behave as though it is true, even in those cases when the object of belief has no actual effect. Belief is absolutely essential to this process – if I tell you “hey, eat this sugar pill”, you’re not going to feel any better (unless you had low blood sugar, but then it’s no longer a placebo, init?).

Anyway, I said all of this as a preamble to the statement that’s been rattling around in my brain for a couple of months. It seemed particularly important to me. Maybe I am vastly overestimating the impact that my ideas have on people – maybe nobody cares about my inane ramblings and will just say “c’mon Ian, get to the swearing!” Anyway, here’s my fucking thesis:

If you have to believe in it for it to work, it’s a placebo.

Nobody intelligent denies the existence of the placebo effect. It’s been observed countless times in many different guises. However, we seem to be happy with confining it to the field of pharmaceuticals, even though it’s much bigger than that. It’s not a scientific thing, present only in beakers and pills, it’s a psychological phenomenon that occurs in the larger world around us, not only in terms of health but in the way we see the world. We carry good-luck charms, we have little personal rituals and idiosyncrasies, we talk about “fate” and “destiny”, we read horoscopes, the list goes on. This is stuff we all do, not just the crazy superstitious bunch. Remember that Seinfeld episode where George eats the éclair from the garbage? It was sitting right on top, only one bite out of it. It’s not as though coming in contact with the garbage can infused the food with virulent disease, but we all identified with the idea. That’s just a modified version of the placebo effect – we believe it’s dirty even though, rationally, we know it’s not.

So why am I talking about this? Why is this important? A placebo is given in a clinical trial as a kind of benign deception on the part of the experimenters. However, a patient in a hospital would never be given a placebo instead of real medicine in a treatment setting – we wouldn’t accept allowing someone to suffer when we have the ability to help. Why, then, are we completely willing to accept placebos in other forms – in some cases clamoring for them? Faith healing, homeopathy, crystals, reiki, tarot cards, psychics, chakras, qi, “The Secret”, placebos, placebos, placebos all. These are all examples of things that don’t work unless you believe they work.

I have, many times, heard the argument that there are other “ways of knowing” or “ways of measuring” that “Western science” can’t account for. This little fallacy will perhaps be discussed in another post, as this one is already getting really long. I’ll boil down my argument as concisely as possible here. There’s no such thing as “Western science”, there’s just “science”. Science is the act of observing the causal chain of a phenomenon to identify the “real”. If you’re not doing that, you’re not doing science. While we can argue metaphysics, ontology, theology, and all those good things from an East/West perspective, there’s only one kind of science. Everything else is slight-of-hand and superstition, washed down with a big handful of placebos.

This is the part where I provide my full-throated defence of all of the things I just attacked. It may come across in the previous paragraphs as though I think that placebos are bad, or that the only stuff that matters is the “real”. Some might believe this to be true, but I don’t. As I said, the mind is incredibly powerful. Sometimes when you’re faced with an incredibly-difficult situation (such as terminal illness, a big speech, an first date), you need to believe that you can get through it. Belief in ourselves is crucial, as otherwise we’d be far too realistic about our limitations and never try anything new or difficult. However, when we throw ourselves into the brink, come out alive, and then give all the credit to our luck rabbit’s foot, we’re doing ourselves a great disservice. When you do something good, take a victory lap! You overcame the odds and prevailed!

And, if you try something and you fail, well you can always blame immigrants, I guess.