Respectful Insolence

The price of quackery

I don’t have much to add to this one, as it’s a tragic tale. Shadowfax, a blogging ER doc, relates to us what happens when cancer patients rely on quackery like the Gerson protocol instead of scientific medicine:

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.

Why had this tumor been allowed to grow so large and painful? I think you know the answer. She was relying on quackery (in this case, the Gerson protocol) instead of chemotherapy and radiation. Her reasoning was thus:

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.


All too true. The cliche goes that you can lead a horse to water but you can’t make him drink. This is true for every patient; we can’t force our therapies on a mentally competent adult patient. People have the right to make their own choices and to suffer the consequences when their choices are poor.

Just like this woman.

After relating how he arranged for this patient to see another oncologist, who was willing to try to help her despite her baggage and extreme distrust of “conventional” medicine, Shadowfax concludes:

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.

Exactly. What’s worse is that, the more woo infiltrates scientific medicine, as it is doing, the harder it is to tell woo from non-woo. Then we ostensibly “science-based” practitioners become the quacks who are only marginally better than the quack who indulges the delusions of a young woman with a potentially curable cancer and thereby leads her into a path of extreme suffering and likely death. I’ve seen it before myself.

I’ve even blogged about it before.

Comments

  1. #1 Pieter B
    September 8, 2009

    This rarely happens, but I’m speechless. Well, not quite. Can Shadowfax find the name of her Gerson practitioner and make a referral to the D.A.?

  2. #2 Todd W.
    September 8, 2009

    Another entry for What’s the Harm, perhaps?

  3. #3 Vindaloo
    September 8, 2009

    I wonder what was the deal with her parents and whether she had a significant other pressuring her or if it was all her. I wonder if family members could have had power of attorney forced given the neurotic behavior. How sad.

  4. #4 yoyo
    September 8, 2009

    That’s so sad but typical. It makes me wonder if it would be ethical or useful to have a book of slides that shows what untreated=woo treated serious conditions become?

  5. #5 Zeno
    September 8, 2009

    There is no good treatment for stupidity. This appears to be an unfortunate case of the “bone-deep” type.

    I hate to think how excruciating her life must be, but she seems like an example of evolution in action. She trying really hard to take her DNA out of the gene pool.

  6. #6 Not a doctor
    September 8, 2009

    To: yoyo

    I’m wondering if it’s ethical to just refuse the meds because somebody who is /taking chemotheraphy/ may come in later and need said meds. (Well if the pain meds are the heavy stuff and if they are rare.. I could see not handing them over.)

    Tough shit. Get your quack to relieve your pain. (Or suggest somebody who will.) Can’t he do that too?

  7. #7 synapse
    September 8, 2009

    This is so sad. My best friend had exactly that type of cancer- B-cell lymphoma, right below the left knee. But he did the chemo that he needed to do for 8 weeks, and that got rid of the cancer. It wasn’t a walk in the park, and he was weak for a while afterwards, but for the last 6 weeks of the chemo, he wasn’t in great pain, and he was walking around, working a little, and hanging out with people.

  8. #8 yoyo
    September 9, 2009

    Most pain medications, even the strongest are among the cheapest drugs we make and they are not rare (even with some of the stupid rules designed to supress over prescribing which mostly hurt the poor and the third world). So no ethically I cant see us denying pain releaf even to the foolhardy or willfully dumb. However if someone leaves their treatment to the last possible second because they are using woo I wouldn’t want them to take hard to get treatment places especially when prognosis may now be really bad.

  9. #9 DLC
    September 9, 2009

    It’s kinda late for chemo and radiation now, isn’t it ?
    Can they even save the leg, let alone the patient?
    whoever sold her on quackery should be held responsible for doing so.

  10. #10 Ge
    September 9, 2009

    This truly is a sad story. However I’m a little appalled by the strange comment that always follows these types of stories: that some person is to dumn to live or procreate; (these remarks also popped up in the comments of the original article). Saying ‘she is taking her dna out of the gene pole’ and ‘evolution in action’ is not only grossly inaccurate of any modern understanding of evolution, (not everyone that refuses treatment gets cancer and not everyone that gets cancer and refuses treatment has no children) it’s also quite rude and insensitive, considering the heartbreaking story of this unfortunate girl.

    Let’s not forget, we don’t know anything else about her, besides the fact she fell for some quackery, in a time of her life, that must be truly frightening (I know, I would be scared if I got a tumor, and rightfully so) . She might be very intelligent, hardworking, creative, etc (not that it matters if she is not) in all other aspects of her life. Please try to think of the implications of what you’re saying in you’re comment, even on the internet.

    Common decency should prevent such remarks.

  11. #11 Richard Eis
    September 9, 2009

    -Common decency should prevent such remarks.-

    Common decency ends when doctors are vilified and ignored for trying to help. Until she then comes crawling back to them when she wants some heavy drug relief while she waits for the ‘magic’ to work.

    Wack the leg off and charge it to her Gerson “doctor” as no doubt when the oncologist is unable to undo the damage he will be getting the blame.

  12. #12 Landru
    September 9, 2009

    The kind thing (and the practical thing) would be to force the woo victim to accept the most effective treatment. But I don’t think that’s going to comport with anyone’s notion of “decency.”

  13. #13 paulie
    September 9, 2009

    This entire case is sad and the worst thing is nothing can be done to force treatment on her as she is an adult.

    I doubt she is stupid but what she believes, in this case that chemotherapy is an evil toxin, is dangerous. People, who are desperate, scared, or want a quick fix will believe anything. Quacks essentially prey on the desperate and that is truly disturbing.

    There is an amusing video at the Onion website satirizing this…about a guy who denies he has cancer (I would post a link but it’s blocked at work).

    There is also an excellent book by Michael Shermer ( I am sure more than a few of you have heard of it) entitled Why People Weird Things…a book I owned in the past but has disappeared down the rabbit hole. It goes through the psychology and sociology behind why people believe the strange things they do. Very interesting.

  14. #14 Calli Arcale
    September 9, 2009

    Ge:

    Let’s not forget, we don’t know anything else about her, besides the fact she fell for some quackery, in a time of her life, that must be truly frightening (I know, I would be scared if I got a tumor, and rightfully so) . She might be very intelligent, hardworking, creative, etc (not that it matters if she is not) in all other aspects of her life. Please try to think of the implications of what you’re saying in you’re comment, even on the internet.

    Rightly said.

    Most people who fall for pseudoscience are intelligent, rational people. They’re usually nice people too, and fine contributors to the human race. It is also virtually certain that other people rely upon them, and will be devastated if the die. Therefore, it really isn’t very nice to just dismiss them as too stupid to live.

    Nor is it prudent. “There, but for the grace of God, go I,” is the old expression. It means that you should be careful about condemning others, because you may be more liable to copy their mistakes than you realize. It’s easy, sitting in front of a computer screen and reading a story about how sad it was that she’s going to die in horrible pain for her choices, to think that she made a bad choice. But can you, in all honesty, say you would never make a bad choice either?

    It’s easy to be frightened, and hard to be rational when you’re frightened. You imagine the worst. Some fears get blown out of proportion. Perhaps she feared losing the leg entirely, and so was more willing to believe when offered another way. She didn’t know Gerson was wrong, and she wanted very much for there to be another way.

    The effective con artists know that if you want to catch somebody, it’s not so much what you offer but *when* you offer it. Spies know this too; if you get regular security training, you’ll be told to report any major problems in your personal life, as all of these render you vulnerable to recruitment. Enemy spies are looking for someone who, though they would never turn on their country normally, are currently desperate. The spy may present them with an opportunity framed as a way to fix their problems with little personal risk and no real harm to the country. They’re lying, of course. But they know that if you’re treading water (metaphorically), you’ll be less likely to question something that looks like a lifeline.

    Salespeople know this too; this is why they have “limited time offers” and special sales. It’s to create a false sense of urgency, which will also reduce your inclination to question the offer.

    I feel pity and sympathy for this woman. What she’s gone through is horrific, and if hasn’t killed her yet, it probably will. It didn’t have to be that way. But a quack offered her something he couldn’t really give, and she took him up on the offer. Her mistake, but an understandable one if you put yourself into her shoes. That makes it all the more tragic, in my opinion.

    So don’t heap abuse on her. Heap abuse where it is deserved — on the quacks who convinced her that this was the right way to go.

  15. #15 Kismet
    September 9, 2009

    No, such a mistake is not understandable in anyone’s shoes. It’s always a stupid and foolish thing to do. And it’s even more stupid to continue down that path if you see that the disease is killing you and everyone around you tells you to undergoe chemo. But then again intelligent people do stupid things all the time.
    No one should have to die and suffer unbearable pain due to a stupid choice.

  16. #16 Patient
    September 9, 2009

    Thank you for this, Orac.

    Tragic tale– but maybe, just maybe, someone will be convinced by reading this. Maybe they will then understand the price they pay with what they DON’T do, meaning getting the right treatment at the right time, and not letting “psuedo alternatives” cloud their rationality.

    As always, your getting the word out there to fight the evil of this quackery is some of the most important work you do. Thanks again.

  17. #17 Strider
    September 9, 2009

    I gotta go with Kismet@15 on this one. This woman kept insisting she didn’t want conventional treatment, against the advice of a trained professional, even after the woo CLEARLY wasn’t working. Isn’t that archetypical stupidity?

  18. #18 Rogue Medic
    September 9, 2009

    -Common decency should prevent such remarks.-

    I agree that the remarks are misdirected and insensitive.

    Common decency should prevent such abuse of patients by quacks.

    Anecdotal medicine is much too common and there is nothing decent about it. This is just another example of the way that it kills. Not opposing anecdotal medicine at every point, contributes to these cases, where unicorn medicine kills.

    Where is Tom Harkin and his anecdotal evidence? What about all of the rest of the quack medicine brigade? Dr. Gordon, Oprah, Jenny McCarthy, . . . . They are all the same. All of these anecdotal medicine practitioners are guilty of contributing to the abuse, and possible death, of this patient and many others.

    This is the harm.

  19. #19 Calli Arcale
    September 9, 2009

    No, such a mistake is not understandable in anyone’s shoes. It’s always a stupid and foolish thing to do. And it’s even more stupid to continue down that path if you see that the disease is killing you and everyone around you tells you to undergoe chemo. But then again intelligent people do stupid things all the time.
    No one should have to die and suffer unbearable pain due to a stupid choice.

    You say it’s not understandable — and then go on to concede that intelligent people do stupid things all the time. That’s why I contend it’s understandable. Bearing in mind that people make wrong decisions sometimes, and bearing in mind how difficult humans in general find it to admit to an error (cognitive dissonance isn’t just an insult; it’s a genuine phenomenon and it’s part of the human condition), it is quite understandable.

    It’s not a reasonable choice, of course. But I can understand how and why she arrived at it, and why she continues to defend it despite the overwhelming and excruciating evidence to the contrary. It’s cognitive dissonance, and it can be very hard to break out of, especially when emotionally the price is so high. (It hurts to admit you’ve just condemned yourself to an agonizing death.)

  20. #20 Kismet
    September 9, 2009

    Well, I like to put it this way: It is understandable that as a rule of thumb, shit happens. But when you personally screw up you don’t go on to say “oh it’s completely understandable” how you screwed up, but you admit that it is hardly understandable how you could have acted that stupidly, but, still, shit happens.
    Ok, maybe this really sounds slightly contradictory. ~_~

    Cogntive dissonance is problematic indeed, but per definition I like to define a “rational choice” as the only understandable path.

  21. #21 Calli Arcale
    September 10, 2009

    Well, that’s why I like to make a distinction between “understandable” and “reasonable”. It’s important to not shy away from understanding why people make stupid choices, and then defend them to the death (sometimes literally, as in this case). It’s important both for the sake of compassion, and for the sake of avoiding such mistakes ourselves.

    You can only understand rational choices? Do you seriously believe you never make an irrational choice, or that it is hopeless to try to understand how we come to erroneous decisions in certain circumstances?

    I don’t think the evidence bears that out. It’s quite clear that there is a distinct pattern to people’s irrationality. There are certain times when we are much more likely to make foolish choices (and *specific* foolish choices) than other times. The whole field of salesmanship is founded on the predictability of irrational behavior. Ergo, we can indeed seek better understanding of why people make irrational choices like this one, which in turn can lead to a reduction in irrational choices. We don’t have to just throw up our hands and say “it’s not understandable; it’s a mystery.”

  22. #22 catgirl
    September 10, 2009

    I hate to think how excruciating her life must be, but she seems like an example of evolution in action. She trying really hard to take her DNA out of the gene pool.

    Show me the evidence that woo-belief, education level, gullibility or any other factors that contribute to this are hereditary and genetic,and then I might think you’re on to something. Remember, evolution only works on heritable traits.

    The one thing that stuck out to me was when she said that chemotherapy never works. Obviously this woman doesn’t care about evidence, but I bet she would be easily moved by personal anecdotes. I think the best thing to do would be to find a person who had the exact same disease she has, but was saved by chemotherapy. It would be great if her doctor could find someone like that and have them meet each other and talk about it. All the statistics in the world won’t convince her, but meeting one person up-close might change her mind.

  23. #23 Rogue Medic
    September 10, 2009

    catgirl,

    She is likely to serve as that example for others.

    Calli Arcale,

    Behavioral economics is full of research on just that topic. Daniel Kahneman and Amos Tversky were the ones who did most of the initial research in the field. One of my favorite authors, Nassim Nicholas Taleb, wrote about this in Fooled By Randomness and The Black Swan. In The Black Swan he described the foolish choices bankers made that led up to the sub-prime market crash. He did this 2 years before the crash. He would talk to these bankers, but be ignored, because they knew better. Not really that much different from this case, except that the consequences are very different.

  24. #24 Prometheus
    September 11, 2009

    Kismet comments:

    No, such a mistake is not understandable in anyone’s shoes. It’s always a stupid and foolish thing to do. And it’s even more stupid to continue down that path if you see that the disease is killing you and everyone around you tells you to undergo chemo. But then again intelligent people do stupid things all the time.

    I suspect that the root problem is fear. Faced with the really unpleasant news that she had cancer and that she needed chemotherapy for it, this young lady looked for an “alternative”. People do this all the time and in many situations – you get stopped by a cop for speeding and you ask for a warning instead of a ticket; your boyfriend dumps you and you ask “Can’t we work it out?” – you’re looking for an alternative.

    In most cases, there isn’t going to be an alternative – the cop is going to write you a ticket, your boyfriend is leaving, etc… However, in the world of medicine, there are always a few bottom-feeders on the fringe who are willing to make a buck (or a Euro) offering a false “alternative”.

    The patient may know that what they are being offered is baloney – most have some idea that it’s too good to be true – but they are obeying one of the cardinal rules of human behavior:

    Most people would rather believe a pleasant lie than an unpleasant truth.

    Faced with cancer and chemotherapy, most people find themselves quite stressed. They are vulnerable to someone offering “an easy way out” – someone who will say to them “Chemotherapy got you scared? I’ve got an ‘alternative’. Try my ‘herbal remedy’, try my ‘zapper’, try my prayers – it can’t hurt.” Who knows, the “alternative” practitioners may even believe that their nostrums work – but it doesn’t matter, because the patient wants to believe, since their only other choice is to face an unpleasant reality.

    I find it frankly amazing that more people don’t take the “alternative” route. I think that speaks volumes about the skill of physicians in communicating with their patients. I think it is also very telling that most “alternative medicine consumers” have a story about their doctor told them “there was nothing to do” or “you’ll be dead in a year” – things I’ve never heard a physician say to a cancer patient. It might be that there are a few physicians with poor people skills or it might be a few patients with poor listening skills. The result is the same.

    Kistmet continues:

    No one should have to die and suffer unbearable pain due to a stupid choice.

    A young physician once said to me, “Nobody should have to die because they made a mistake.” My response was, “Maybe so, but it is a leading cause of death.” Making bad choices is all too often fatal, especially if it becomes chronic.

    That said, I hope (and expect) that the (real) physicians treating this young girl will do what they can to alleviate her pain and suffering. With any luck, she will return to reality in time to save her life – and her leg, if possible.

    Prometheus

  25. #25 Charles
    September 12, 2009

    With friends like Google…
    Not knowing anything about the Gerson Protocol I Googled it.
    788000 hits, of the first 20, 17 are pro quack, 2 are pro science, and one was for VoiP with Gerson in the company name.

  26. #26 Ned
    September 14, 2009

    This reminds me a bit of one of my father’s cases: A young man – a skilled woodworker as I recall – presented with a similar B cell lymphoma in the humerus (upper arm).

    This was back in the early 1970s, before effective chemo agents like rituximab were available. Given the placement of the tumor and some other factors, amputation ended up being the only option. But the odds of recovery after amputation in this case were quite good.

    The patient refused the surgery, preferring to have a short life with both arms. As I recall he lasted a couple of years.

    His choice is not one I would have made, but I can at least sort of understand it – the loss of an arm would be very difficult, especially for someone like a woodworker. Indeed, his biggest “mistake” was simply one of bad timing – had he been born 25 years later this would have been treatable, and likely curable, without amputation.

    But this current case … it’s deeply depressing is what it is.