03 September 2009

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.

30 comments:

RevMedic said...

Is her name Eileen? Cuz it sounds like it very well might be in the near future... What a shame.

Reality Rounds said...

Very frustrating. I am in a blog fight currently with people who oppose vaccines. I guess I am a "vaccine advocate" which is meant to be a dirty word. Bring back smallpox I say!

Felix said...

Indeed, that young woman may die -- after enduring months of excruciating pain.

The only hope remaining to the rest of us is that she makes her exit before procreating.

Felix.

David said...

Wow, I've been reading your blog for quite a while but this article has finally made me pipe up . . .

I seriously doubt that the Wooers bothered to tell Wooee (aka gullible lady) that their system is based solely on methods used prior to modern oncology i.e. back when there weren't many alternatives.

Heck here you go from a guy who actually advocates the gerson protocol.

"... Peter Lechner and his colleagues, all of them surgeons, have been testing the Gerson method (GP) as an adjunct, often with chemotherapy or radiation, in 60 post-operative cancer patients..." -
Ward PS.
History of the Gerson therapy. Contract report prepared for the U.S. Office of Technology Assessment.
U.S. Government Printing Office, 1988

The rest of the article mentions that adjunct GP works as a mild palliative for people receiving chemo/rad/surgery treatments.

Sadly she will probably die since she could spend one afternoon on wikipedia figuring out that GP won't work.

David

Anonymous said...

We can only hope that H1N1 mutates to a very deadly strain to rid the planet of antivaxers via natural selection

Toni Brayer MD said...

This is a great post because it describes a very sad story that we have all seen in one form or another. You are correct that usually these "sham" therapies are not harmful because the conditions are not lethal. This one is.

Felix: I know you didn't really mean your last sentence did you?

ndenunz said...

Part of the outrage is that her physicians have to deal with the consequences of her poor choices. This is such an unsatisfying way of practicing medicine. For those that really care it is "soul sucking".

dimitrios said...

Its nice to see a post that wasn't in some way shape or form related to the Healthcare reform issue.

In the end we all have free will to make our own decisions, whether they are smart or stupid we have to bear their consequences.

If she wants the magic elixir as opposed to chemo and radiation then she'll have to bear the burden of her decisions.

Also I'm a bit shocked at some of the hateful statements some of you people made towards this poor girl. She didn't do anything wrong refusing chemo and radiation and wishing she dies before procreating makes me feel sad for the person that would say such a horrible thing. I suspect that you have some of your own issues to deal with and I would recommend some serious therapy. All she did was refuse chemo, not sell her own kids into slavery. Now that would have deserved some of the more sickening comments.

ERP said...

I have to say it would be very difficult for me to deal with such a patient. I would be absolutely disgusted that there are "physicians" out there who would promote such a "protocol" and it would be hard for me not to show it.

Bongi said...
This comment has been removed by the author.
Bongi said...

i think modern medicine has halted evolution. no longer are those weaker genes filtered out.

but it seems the really stupid genes may still filter themselves out. it makes me feel less guilty about what i do.

Jon Slater said...

We see a lot of this in paediatrics. In residency we saw a new kid with meningitis every week. The world is a safer place, we live longer but people still worry about toxins. Very frustrating

donalfall said...

Frustrating is indeed the correct word for it. I applaud your patience in trying to clear her perceptions. Sigh. This is the kind of issue that makes me boil with rage at the waste of potential exhibited in this case, as in many, many, many others. However, rage and wishing ill clouds the argument. The most relevant part is that you were human enough to try to reach her, IMHO. The saddest part is that you couldn't.

Patrick Redmond said...
This comment has been removed by the author.
Patrick Redmond said...

Very sad, there should be a special hell for all purveyors of false hope and quackery. Along with reading, writing and numbers our schools should be teaching scepticism and evidence evaluation. Maybe then these situations would happen less.

David said...

Evidence evaluation/critical thinking skills are overshadowed in modern education by the need to rote memorize and quickly jot down an answer. I think US education has become increasingly distant from an application basis. In school we're mainly taught to recognize the right answer on a multiple guess test and dump the knowledge before the next information bolus.

Pieter B said...

If I were a prosecutor, the only question in my mind would be whether to charge the Gerson practitioner under reckless indifference or depraved indifference.

k1 said...

Oh how horrible. I can only imagine how frustrating it must be as a doctor to not be able to change her mind and to know that the course she is on right now may kill her. I hope that something you or the doctor you reffered her to is able to change her mind.

Dave said...

Darwins theory of Evolution in action.

Sucks to be her. I wonder at what point you gotta start thinking with a patient like that, that they need a psych referral as well.

I mean, faith aside, at some point logic has to enter into the picture. What will be especially sad, will be down the road when if she clues in and realizes that a standard treatment protocol earlier on would have caused her much less pain/trauma etc

Oh well, like ron white says, you cant fix stupid.

Jamie said...

@Bongi
http://scienceblogs.com/gregladen/2009/08/falsehoods_has_evolution_stopp.php

Anonymous said...

Have you considered submitting this to What"s The Harm

http://whatstheharm.net/contact.htmlc

Kate Burton said...

This is such a shame. I don't understand how even the practitioner of a program like this could continue with their "treatment" when seeing obvious worsening of the condition. From the Gerson site it appears that their "practitioners" are supposed to be licensed, could they be sued for malpractice?

DrWes said...

Sad post, but very well done. Ultimately as doctors, we must respect the patient's right to choose their treatment, even though it flies in direct conflict with our beliefs. Still, the impact of quackery continues to astound...

Rogue Medic said...

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.


With Jenny McCarthy and the rest calling for the return of vaccine preventable illnesses as safer than vaccination, I would not expect the numbers to remain low. A good site is JennyMcCarthyBodyCount.com.

The problem with schools is that we have politics dictating what is taught. We need to educate students in the use of logic and the scientific method. We fail our students. We share the guilt of these deaths.

It is great that you took the time to help her, but she seems to be a textbook example of cognitive dissonance. Maybe she will accept the truth, before it kills her. Whatever the result, you know that the unicorn medicine people will blame medicine.

Rogue Medic said...

This bothered me enough that I ended up posting/ranting about it on my blog as well.

Anecdotal Medicine Lives - This Patient May Not Be So Lucky

Michael said...

This makes me sad to hear, I regularly worry about my mom. She's one of those people who goes for every non medical treatment possible... luckily she's never had anything serious yet, but I fear for the day that she does.

It also makes me sad that her perspective has passed down to my sister, who has gone the no vaccine, no medicine, route with her kid as well.

Bianca Castafiore said...

this rang a faint bell -- was not gerson a figure in the book death be not proud (which, it is important to note, ended badly)?

had this young woman read the book? it might serve to romanticize gerson's approach -- to a certain dramatic kind of mind.

as for me, dying doesn't hold much appeal. most days!

good luck to her. i'd be tempted to shake her...

Calladus said...

Ignorance is curable.
Stupidity is frequently fatal.

Matlatzinca said...

I know this comes late to the discussion, but thought you would appreciate the link (and most of your readers will as well):

http://www.sciencebasedmedicine.org/?p=291

Jeannie Danna said...

Now, I want a refund on the two books that my husband and I just bought, Natural cures "They" Don't Want you to Know about and More natural Cures, by Kevin Trudeau.
I actually thought that we should refuse all pharmaceuticals. This would not be good for my husbands' high blood pressure or my lack of a thyroid. So, this is the land of Woo!