September 8, 2009

Woo... and the cost of it

From the blog Movin’ Meat, written by Shadowfax… a direct copy and paste. My comments follow.

The Human Cost of Woo

I saw one of the most disturbing things of my career recently -- and that is really saying something.

This was a young woman, barely out of her teens, who presented with a tumor in her distal femur, by the knee. This was not a new diagnosis -- it had first been noted in January or so, and diagnosed as a
Primary B-Cell Lymphoma. By now, the tumor was absolutely huge, and she came to the ER in agonizing pain. Her physical exam was just amazing. The poor thing's knee (or more precisely, the area just above the knee) was entirely consumed by this massive, hard, immobile mass about the size of a soccer ball. She could not move the knee; it was frozen in a mid-flexed position. She hadn't been able to walk for months. The lower leg was swollen and red due to blood clots, and the worst of the pain she was having seemed due to compression of the nerves passing behind the knee. It was like something you see out of the third world, or historic medical textbooks. I have never seen its like before.

So we got her pain managed, of course, and I sat down to talk to her and her family.

What I learned was even more amazing. The patient had been seen by the finest oncologists in the region upon diagnosis. They had all recommended the standard treatment of a combined regimen of chemotherapy and radiation. She had, however, steadfastly refused this treatment. She preferred, she said, the "
Gerson Protocol." This is, she continued, "a way for the body to heal itself with a combination of detoxification and boosting the immune system."

In a less grave situation I might have laughed and asked "So how's that working for ya?"

As it was, the tears from her only partially-controlled pain took any humor out of the situation. She was very frustrated that the Gerson therapy wasn't working yet, but she did not perceive this as a failure of the treatment. Her theory was that the severity of her uncontrolled pain was keeping her immune system suppressed and preventing it from working. If, she hoped, she could just get her pain under control, she would finally start to get better.

I spent a lot of time with this young lady. Listening as well as explaining. She was dead set against chemo, which to her mind was equated with the "toxins" which had caused her cancer in the first place. She wrote off the oncologists as pushing chemo "because that's all they know how to do, and it never works." She had, in fact, burnt all the bridges with the various oncologists who had treated her, and was now left with only a pain specialist and a primary care doctor trying to do what little they could for her. She was equally frustrated by doctors in general, who "won't do anything to help me."

I could see why she felt that way; when a patient refuses the only possible effective treatment, there is not really much we can do to help her.

I did what I could. I talked to both her doctors, and I called a new oncologist. The oncologist, a wonderful man, promised to make time to see her in his clinic, even fully forewarned of the "baggage" she would be bringing with her. She was happy to receive the referral, though I warned her that the new oncologist would be recommending more-or-less standard treatments. Ultimately, she went home and I was left to reflect on the futility of the situation and the absolute wickedness of the charlatans and hucksters out there who promote this sort of thinking. From the late Dr Gerson, to his modern-day counterparts Andrew Wakefield and Jenny McCarthy.

Most woo is harmless -- but that's because most woo is directed at chronic, ill-defined, or otherwise incurable conditions. Think chronic fatigue or fibromyalgia. Wave a magnet at somebody, get them to do a lot of enemas and go on a special diet, and you get to write a book and go on Oprah and collect a lot of money. If the subjects of the "magical thinking medicine" think they are better from the intervention, then so much the better.

But the really pernicious thing about allowing fantasy medical theories and treatments into the mainstream is that when they gain enough credence among the masses, they will tend to be used in place of real medical treatments that work. Like vaccines. Even the anti-vaxxers have a limited and indirect harm -- of the many thousands of children who go unvaccinated, only a very few get measles and even fewer die. It's a real harm, but one which is easy to miss if you're not affected personally. But when woo supplants real medicine against lethal diseases that actually have effective treatments, the harm is so much more severe and so apparent that it cannot be left unrecognized. Because of the practitioners of "alternative" medical treatments who irresponsibly and
dishonestly teach people to distrust medicine and embrace unscientific treatments, this young woman is enduring incalculable pain, and may well lose her life.

It's sad, and it's an outrage.


Yes. It is both sad and an outrage.

But you folks know I don’t generally write about medicine. What I would like to do is use the unusually sad and outrageous situation described by Shadowfax as a parallel to the crap that we see today in politics.

Please tell me I am not the only one to see a parallel between pseudoscience and the kind of pseudo-philosophy that has captured the polarized wings of American politics.

~~

12 Comments:

jbrock said...

Please tell me I am not the only one to see a parallel between pseudoscience and the kind of pseudo-philosophy that has captured the polarized wings of American politics.

I hadn't really thought about it, but yeah ... Medicine without science and philosophy without logic?

And both motivated by profit of one kind or another (not necessarily pecuniary)?

Mule Breath said...

At times the profit is as simple as the acquiring of a following to believe crackpot ideas. That is Glenn Beck's and Sean Hannity's profit. Newt Gingrich and Sarah Palin too. It works when an eloquent orator spews sufficient baffling and quasi-logical bullshit to capture ignorant souls. Souls predisposed to search out confirmation for that which they already believe. The lack of science in the orator's speech makes no difference... so long as it confirms a bias.

We are witnessing this today in frightening proportion on both sides of the political spectrum. Philosophy without logic; without truth. Both political wings are guilty, and both point to the other's trespass as justification for their practice. It is spiraling our republic down the drain.

What would the world be like if scientists started fudging things to prove what they believed to be true? What would be wrong with that? The other side does it; and fair is fair... right?

What is most curious is the number of people who would condemn a scientist for this practice, but find no problem with it in politics.

Mule Breath said...
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jeg43 said...

In general, I object to the use of the prefix "pseudo-" because it tends to almost legitimize fakes of all sorts. If not legitimize, it raises them to the same level of discussion as the "genuine articles," which I think is wrong.

I also have a problem with considering a political party's world view as a philosophy. In my mind a philosophy implies serious rational thinking which has been pretty much missing from politics for quite some time now.

I think your connection between the charlatans in medicine and the charlatans in politics is valid. Both peg my BS meter. We are fortunate that political charlatans usually aren't the direct cause of debilitating pain and death (ignoring GWB's wars and the Katrina debacle) like the health charlatans who are directly responsible for the awful condition of the young woman in your post.

Mule Breath said...
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Mule Breath said...

Woo comes in many forms; medical, political, religious, and various combinations, and there have been power hungry woo slingers peddling their snake oil throughout the ages.

Katrina and Iraq are, of course, fresh in our minds, but I wouldn't want to dwell on recent history alone. Scores, if not hundreds of other examples may be found in the history books with much of it happening in just the last 50 years.

In the end it is the individual who is responsible for recognizing truth from woo. The young lady in the story was offered every opportunity to turn toward the light, but refused. As every con man knows, suckers are born every minute.

Rogue Medic said...

The parallels are there. They do not appear to be anything short of obvious. I don't write a lot of political posts, but when I do, they are often examples of this kind of blindness to reality.

I agree with jeg43. I try to catch myself, when I might use the term pseudoscience. I think that anti-science is a much more accurate term. For any shade of science, there needs to be the possibility of changing one's mind. If you ask a scientist, What would lead you to change your mind about X? The scientist should be able to give you several examples of evidence that would accept a different position. The same is not true of the anti-science mob. There is nothing that might change their minds. Not incrementally. Not at all. It does not matter what the truth is, they will believe what they want, regardless of reality. That is anti-science.

WV - nessoid that might be a specific type of anti-scientist. :-)

jeg43 said...

"In the end it is the individual who is responsible for recognizing truth from woo. The young lady in the story was offered every opportunity to turn toward the light, but refused. As every con man knows, suckers are born every minute."

I can understand the young lady's decision. The world is full of information about the often terrible side effects of chemotherapy and radiation. That she was presented with an alternative "treatment" that would never result in any of the side effects that chemo/rad could cause must have been very attractive. Of course she is ultimately responsible for her decision - but what about those who presented her with the "Gerson Protocol?" Are they without blame? I am very uncomfortable with leaving the ball in her court. None of us can say that we've never taken the easier way out of a bad situation - particularly when the "easier choice" was supported by a source supposedly better informed than ourselves. How does one choose the right course when different so-called experts expound believably on the different courses of treatment? At the very least, whoever told her about the Gerson Protocol should be presented with the proof that it failed, and be prevented from presenting it as a cure in future.

Rogue Medic said...

jeg43,

I agree. I do not see any benefit in criticizing her. Even though her decision was a very foolish one, she is continually paying for that decision.

Those quacks pushing this form of death do not seem to receive any punishment for their fraud.

That needs to change. This is just one case that makes it clear why we should punish these charlatans.

Quackery is fraud.

Fraud is a crime.

Mule Breath said...

Perhaps it could be understood that an uninformed or ignorant young woman made a foolish choice based upon quackery and slick salesmanship. Perhaps we could forgive her for that, and perhaps also we could understand why the the young woman made the choice given the persuasiveness of snake oil salesmen.

But why should we be forgiving of continued, willful denial once the woo has been exposed and good science revealed? This type of denial goes beyond simple ignorance and gullibility. How is this person so different from the quack they follow? Most followers tend to be missionaries for their quack to some degree, so why do we give them a pass?

We can only save folks willing to cast off ignorance and accept science. Belief in woo is pervasive, and for some it is chronic. We can't save them all and thus we should concentrate on the converts, letting the chronic suckers go their own way.

There is correlation in this tale with the story I posted some time back where a child was led to her death due to the snake oil religion of her parents. If you recall I called for the prosecution of the parents. There is also parallel with anti-Obama hysteria, and at least some of our friends participate in that particular form of woo. The fraudulent activities of medical quacks, religious charlatans, and political wingnuts all deserve special attention and the victims we can save deserve our care. Perpetual deniers do not

Regarding RM's fraud comment, I couldn't agree more, but this victim has yet to cry thief. How do we pursue legal action without a victim?

Regarding the use of the modifier "pseudo", these are accepted usages so I've seen little reason not to employ them, but if clarity would benefit, I suppose I could make the effort.

Rogue Medic said...

Most followers tend to be missionaries for their quack to some degree, so why do we give them a pass?


I agree. I was not thinking of that.


If you recall I called for the prosecution of the parents.


I agree and have also called for the prosecution of parents, who kill, injure, or otherwise abuse their children. Religion is not a legitimate alibi. If they wish to pray, there is nothing to prevent them from praying. Many of those providing legitimate medical care will also be praying for their patients. Claiming that religion is a legitimate substitute for medicine is not logical. There isn't anything in the Bible about healing with medicine, because medicine did not really cure illnesses until the purification of penicillin for human use in 1941. There were means of manging diseases, but not of curing. Hardly the same medicine that is described in the Bible.


There is also parallel with anti-Obama hysteria, and at least some of our friends participate in that particular form of woo.


I agree. We need to encourage people to make end of life decisions long before they become incapacitated and end up with the government making those decisions for them. The hypocrisy of those claiming these are death panels goes beyond cognitive dissonance to insanity. Other areas of criticism should be limited to actual debate of the issues, not calling names and criticizing imagined offenses.


The fraudulent activities of medical quacks, religious charlatans, and political wingnuts all deserve special attention and the victims we can save deserve our care. Perpetual deniers do not.


Are you stating that she does not deserve care? Or that she does not deserve our compassion, Or something else?


Regarding RM's fraud comment, I couldn't agree more, but this victim has yet to cry thief. How do we pursue legal action without a victim?


I am not a lawyer, but I believe there are many cases, where the victim does not need to be the one filing the criminal complaint.

If she were declared incompetent, which I would not think should be too much of a stretch, her guardian could file charges.

I would hope that at least manslaughter charges, the same as with parents of the child sacrifices, would be filed in this case (if she dies). I do not know if practicing medicine without a license might be applicable. I don't know if reckless endangerment might require her to file the charges.


Regarding the use of the modifier "pseudo", these are accepted usages so I've seen little reason not to employ them, but if clarity would benefit, I suppose I could make the effort.


I agree that they are accepted. I do not think that they make the point as effectively, or as accurately.

jeg43 said...

"Regarding the use of the modifier "pseudo", these are accepted usages so I've seen little reason not to employ them, but if clarity would benefit, I suppose I could make the effort."

I certainly didn't intend to pull anyone's chain about the use of "accepted" phrases. I was stating a personal opinion.
Having read and participating in a few of these discussions, I have developed the impression that poking holes in accepted things in general is what these discussions are largely about. I'm ready to be corrected about this.