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Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?

Yesterday, I wrote about Daniel Hauser, a 13-year-old boy with Hodgkin’s lymphoma who, with the support of his parents, has refused conventional therapy for his cancer, which would normally consist of chemotherapy and radiation. Given his stage and type of tumor, he could normally expect at least an 85% chance of surviving and perhaps even greater than 90%, wherea without therapy he is certain to die of his disease, barring a rare spontaneous remission. The reason given by his Daniel and his mother Colleen is that they belong to a highly dubious-sounding American Indian religion called Nemenhah, which is led by Philip “Cloudpiler” Landis, a white man who claims to be a naturopath and Native American “healer” peddling “cures” for AIDS and cancer. I originally described this as yet another case of irrational religious beliefs that reject science deluding another unfortunate child. Indeed, recently I learned that Chief Cloudpiler was also involved in the case of Chad Jessop, a 17-year-old who refused conventional treatment for melanoma. Indeed, he even commented on a blog I referenced about the case.

However, readers referred me to a story that makes me wonder if religion played such a huge role in Daniel Hauser’s refusal of chemotherapy after all. Actually, as I wrote yesterday’s post, I had contemplated that this might be the case as well. What made me think that is the fact that Daniel’s mother allowed him to undergo one round of chemotherapy right after his diagnosis. It was only after Daniel had a rough time with the chemotherapy that suddenly he started refusing to undergo any more chemotherapy. Add to that this bit of personal history, and the story becomes more complex, as one of Daniel’s doctors testified:

Joyce said during his testimony that Daniel’s diagnosis was not the same as Daniel’s aunt’s, who died after having chemotherapy.

Apparently this happened when Daniel was only 5. And then there’s the testimony of Shiree Oliver guardian ad litem:

Oliver said she thinks Daniel’s fear is caused by his aunt’s death and said she would recommend he see a counselor.

Oliver said she doesn’t fully understand the Nemenhah’s religious beliefs and doesn’t believe Daniel Hauser fully understands his religious beliefs or has the capacity to make decisions on his medical care by himself.

I would argue that such is true for the vast majority of 13-year-olds.

Then consider this. I have discussed now three children who have rejected chemotherapy or whose parents rejected chemotherapy for cancer. Daniel Hauser is only the most recent of them. Two of them may be familiar, and I alluded to them before: Katie Wernecke and Abraham Cherrix, the latter of whom was a frequent topic of this blog. Both of them had lymphoma. But not just any lymphoma. Hodgkin’s lymphoma. While Katie Wernecke’s parents refused radiation after a course of chemotherapy, Abraham Cherrix is much more like Daniel in that he refused further chemotherapy after having a rough time with his initial course. What all of these children (and parents) have in common is that they agreed to conventional treatment initially and then balked when they saw how difficult it was. And, make no mistake, I don’t minimize how bad chemotherapy for lymphoma can be. Despite advances over the last 30 years that have produced both treatments that are less toxic and better supportive and anti-emetic therapies, it’s still no walk in the park, and it’s even harder for a child to understand why enduring it is necessary. All the child knows is that he feels lousy, that the drugs are causing it, and that he feels better during the breaks between therapy. The parents, loving their child, see him suffering and complaining about it, but are unable to relieve it. They can only watch, hurting as they see their child hurt.

Is it any wonder that a child would do anything to make the awful feelings stop? Is it any wonder that some parents would latch on to any excuse they can find to make their child feel better while at the same time convincing themselves that they’re still treating the child’s cancer? Is it really that surprising that what some parents latch onto is a delusion, be it “alternative medicine” or religion? Is any more surprising that they would gravitate to a religious set of beliefs that seems to validate their rejection of conventional medicine and at the same time tell them that everything will be OK?

I don’t know about you, but I don’t think it’s surprising at all. Using religion to justify irrational choices is not limited to just medicine.

There’s also another factor at play here. It’s one that’s always puzzled me. For some reason, chemotherapy holds a particular horror for most people. Many operations are arguably as painful and difficult to recover from as chemotherapy; yet patients rarely refuse surgery. Comparatively speaking, they often refuse chemotherapy, at least in my experience. Indeed, remember when I wrote about cancer cure testimonials? I pointed out how, in many cases, the people making these testimonials accepted surgery for their tumors but rejected chemotherapy in favor of their favorite woo. Naturally, they attribute their survival to the woo instead of the surgery. The reason such “testimonials” are convincing is because, for most solid tumors that haven’t metastasized, surgical extirpation is the primary therapy (exceptions include anal cancer and testicular cancer), and chemotherapy is given in order to decrease the risk of recurrence. Let me repeat that: To decrease the risk of recurrence. What that means is that it’s quite possible to be “cured” by surgery alone, particularly for common tumors like breast or colon cancer. Refusing chemotherapy may make cure less likely, but chemotherapy isn’t absolutely essential to a cure occurring. The same is true of radiation. Most people don’t understand that; so the testimonials for the woo sound convincing: “I refused chemo and I’m still alive.” Of course, those who are no longer alive don’t give testimonials.

Unfortunately for Daniel, the primary treatment for Hodgkin’s lymphoma is not surgery. Indeed, surgery has a very limited role in Hodgkin’s lymphoma these days, mainly for diagnosis in the form of biopsies. Rather, the primary treatment for Hodgkin’s lymphoma consists of chemotherapy and radiation. Rejecting them is rejecting any reasonable chance at cure.

Another aspect of the fear of chemotherapy may well be how much it is associated with death from cancer in people’s minds. As cancer patients get sicker and chemotherapy begins to fail, the cancer starts to take its toll. Dying cancer patients frequently take on the cachectic look of a starving concentration camp survivor as the cancer does its evil work. To the average person, it may well appear more as though it’s the chemotherapy that’s making the patient sicker more than it is the tumor. Then the patient dies, and the linkage between chemotherapy and a horrible death is sealed in the mind of the family. It is an linkage that the “alternative” medicine cancer industry tries very hard to reinforce, as it offers “natural” medicines that supposedly cure cancer with no risk and no suffering. Would it were true! If it were, I would be totally on board using these “natural” therapies. But, sadly, whenever one looks at such claims more critically, they virtually always turn out to be without foundation or justification in science and clinical trials.

It’s not as if I’m oblivious to the fear of chemotherapy. Let’s face it. Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.) Chemotherapy poisons cancer cells, and the reason it can treat cancer is because it poisons the cancer cells more than it poisons normal cells. And radiation therapy does “burn.” It’s just that, the way it’s given, it’s more toxic to cancer cells than it is to the surrounding tissue, and that differential toxicity can be increased by administering it in numerous small fractions over several weeks. Be that as it may, older chemotherapy regimens could be very toxic indeed, and death due to immunosuppression and infection is a possible complication of even some of today’s chemotherapy regimens. What has to be considered is the risk of the chemotherapy versus the risk of death from cancer. In the case of metastatic cancer, the risk-benefit ratio to be considered is the risk of complications from the chemotherapy versus the relief of symptoms due to the cancer and the prolongation of life. Either way, it’s a tradeoff, with death looming in the background and some degree of suffering unavoidable. Worse, scientific medicine can’t promise what patients and parents want most: That everything will be OK. All it can give is percentages, which do not satisfy. And we all know that chemotherapy doesn’t always work; patients all too often die of their cancer anyway.

Religious quackery–or even non-religious quackery–doesn’t acknowledge that tradeoff. It promises the cure of deadly diseases with no risks and no suffering. I ask again: Is it any wonder that fearful parents or patients might seek solace in such irrational belief systems that tell them their child will be cured of a fatal disease with no suffering if they follow a “natural” therapy? Remember, Daniel’s mother testified that she believed that the “alternative” therapies Daniel was pursuing will result in a “100%” chance of Daniel’s surviving.

The more I think about this case, the more it seems to me that the specter of Daniel’s aunt is probably driving things and that religion is merely a convenient excuse for a decision that was far more the result of fear of a second round of chemotherapy in the wake of a rough course with the first round. After all, Daniel’s mother agreed to let him undergo chemotherapy at first. What probably happened is that they both freaked out when they saw the complications, echoes of Daniel’s aunt running through their minds, and that this led to their refusal to let Daniel undergo any further chemotherapy. Add to that being a member of a fake religion run by a highly dubious “healer,” and claiming that their religion forbids chemotherapy is a convenient justification to do what they wanted to do anyway regardless of religion. Indeed, apparently one of the lawyers assigned to Daniel says he will no longer acknowledge religion as a justification for Daniel’s decision:

Discussion about that testimony was forbidden by the judge, but an attorney assigned by the court to represent Danny’s best interests emerged from the session with a different perspective.

The lawyer, Thomas Sinas, said he’ll no longer acknowledge “the genuineness of Danny Hauser’s religious beliefs” based on his closed-door testimony. Sinas offered to explain the change, but Judge Rodenberg told him not to.

It’s all very easy to rail against religious ignorance as the cause of this tragic story, as many skeptics are doing (sometimes very heartlessly indeed) and certainly that was my first inclination. Often it’s justified, as in the case of Madeline Neuman, the 11-year-old girl whose parents allowed her to die from diabetic ketoacidosis rather than take her to a doctor because they believed that prayer would cure her. However, in this case, I’ve come to conclude that it’s all very knee-jerk and simplistic. Rather than being the driving cause of an irrational decision to reject curative chemotherapy in favor of quackery, in the case of Danny Hauser, religion appears to be more of an excuse to justify and provide a legal defense for a fear-driven decision in parents predisposed to “alternative” medicine. I’m again left wondering whether, if there had been better support mechanisms for families such as the Hauser family, this whole kerfuffle might have been avoided and Danny would be on his third course of curative chemotherapy right now. I realize that not everyone is reachable, but, given that Daniel’s refusal of chemotherapy appears to be far less driven by religion than I had first thought, perhaps he and his mother would have been more reachable than I had thought.

The legal decision is coming any day now (maybe even later today), and I fear the legal strategy to paint this issue as one of religious freedom rather than of child neglect and endangerment may work.

Orac’s commentary

  1. Another child sacrificing himself on the altar of irrational belief
  2. Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?
  3. Judge John Rodenberg gives chemotherapy refusenik Daniel Hauser a chance to live
  4. Mike Adams brings home the crazy over the Daniel Hauser case
  5. The case of chemotherapy refusenik Daniel Hauser: I was afraid of this
  6. Chemotherapy versus death from cancer
  7. Chemotherapy refusenik Daniel Hauser: On the way to Mexico with his mother?
  8. An astoundingly inaccurate headline about the Daniel Hauser case
  9. Good news for Daniel Hauser!
  10. Daniel Hauser, fundraising, and “health freedom”

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

263 replies on “Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?”

I am wondering if (and hoping that) Judge Rodenberg’s refusal to allow testimony about the genuineness of Danny Hauser’s religious beliefs is a hopeful sign. Perhaps it’s the judge’s way of saying “Don’t go there, because it could provide grounds for an appellate court reversal, and we don’t need it anyway.”

Oh, about surgery vs. chemo: It’s rampant speculation on my part, but perhaps it has something to do with the dominance of automobiles in modern culture. No, really, hear me out.

I remember once saying to my father after his quadruple bypass (which was a few years after his double bypass), “You think your body is like a car, and the surgeons are mechanics who’ll fix you right up.” And my dad, who’s a very smart man, said simply, “Yes.”

When you take your car to a mechanic who installs new parts, you think of your car as “fixed.” Buying stuff yourself to pour into the gas tank is seen as a half-measure of dubious effectiveness, which, at least for cars, it probably is.

Maybe for lay people who are desperately trying to get a handle on assessing the effectiveness of treatments in complex, unfamiliar situations where life hangs in the balance, the car metaphor is the best they can come up with.

Consider this situation:

My son was born blind (anophthalmia) with a bilateral cleft lip and palate. He has since been diagnosed with Asperger’s Syndrome and epilepsy.

He is now 22, and has had numerous surgeries to correct the clefts, but still needs major surgery to his nose to look relatively ‘normal’, and requires veneers on his malformed teeth.

His surgeon is giving him the choice as to whether he has a ‘nose job’, (albeit major surgery) in such a way that makes me want to swoon over doctors that deal with ‘kids in crisis’. Without any posturing or domineering, he has convinced my son that surgery for his nose is the best thing for him.

For this, I am really grateful. I am a scientist (PhD in epidemiology), and a mother. I need and want the medical community to help my child and others like him to live and grow.

I don’t disagree with any of the substance of the post, and I certainly agree that some of the baying “skeptics” have knee-jerk reactions (“aaagh! religion!!”) leading to Instant Outrage.

But his seems tricky consent-wise. We all (probably) agree that Daniel should make an informed decision. Are the medics taking the view that the only possible informed decision is to take chemo, because he almost certainly won’t live long without it?

So is “better support mechanisms for the family” a completely honest description, or is it a nice way of saying “browbeat the family until they consent to do what we think they should do”?

The lad apparently has rational fears of chemotherapy from seeing his aunt. At present, he doesn’t want the chemo. Without it, he’s in trouble.

So what hoops does he have to jump through to be allowed to continue to say “no, it’s my body, my life, I don’t want it”? Maybe it’s the “wrong” decision, but life is full of opportunities for wrong and deadly decisions: jump off a cliff, torment big dogs, run into busy traffic, point a toy gun at an armed cop.

I dunno, it’s difficult to know when it’s correct to intervene to protect folk from their bad decisions. And it’s doubly difficult when their decision is a “no thank you”.

There’s an old legal saying: “hard cases make bad law”. I think that is simply a recognition that there are always grey areas in these decisions. Daniel is in one of them.

I hope he chooses to live!

Indeed, an excellent post.

One thing that I’m finding encouraging is the quality of reporting on this story compared to some others. Maybe it’s because it’s here in Minnesota, where we’ve got a strong cultural attachment to modern medicine, what the Mayo Clinic, the headquarters of Medtronic, and so forth. The Strib has a nice and appropriately skeptical piece, which comes to the same conclusion: that this is not a matter of religious conviction, but a matter of using religion as a legal shield for dubious decisions, exploring the background of the “Nemenhah” organization and also mentioning a website run by an Apache which is dedicated to exposing frauds who exploit Native American mystique. He calls these sorts “plastic shamans”.

One sharp bit from the article: In other words, if Danny’s Internet-purchased regimen doesn’t work, critics say, he will live a tragically short life, but it won’t be because the government interfered with religion. Call it death by multilevel marketing.

Minneapolis Star-Tribune: A closer look contains hints of sham artist, not a shaman

I dunno, it’s difficult to know when it’s correct to intervene to
protect folk from their bad decisions. And it’s doubly difficult when
their decision is a “no thank you”.

As I said in my previous post, as far as I’m concerned a competent adult can refuse treatment for any disease any time he or she wants for any reason he or she wants, as long as he or she understands the consequences, the sole exception being infectious diseases that might cause epidemics, in which case the state has a compelling interest in at least quarantining such people. This is a 13 year old boy and thus is not considered capable of making these sorts of informed decisions. Normally, it is expected that the parents will therefore make such decisions for him, but they are making a decision that will lead to Daniel’s death. Adults may have the right to let themselves die by refusing treatment, but they do not have the right to impose that choice on an underage child, parent or not. In these cases, it is entirely appropriate for the state to step in and try to stop it if it can. Not providing proper medical care to a child is child neglect.

The problem with dithering over chemo or not chemo is that by the time you get a diagnosis, the clock has already been ticking. The longer you wait, the worse your chances for a successful outcome.

In this case and in Cherrix’s case, you mention that both went through chemo. In Cherrix’s case, I seem to recall that he went through a whole course of treatment, and that it was unsuccessful; and then he rejected going through another course (different?).

Is there a lower chance of recovery if the first course fails? What does that look like compared to the relatively high recovery rates you cite earlier? I guess I’m wondering if there’s a balancing point where it might be reasonable to choose not to undergo further chemo because the probability of recovery is so low and the probability of suffering during chemo quite high?

No one knows the full story of the involvement this family has with this religious group, just that they follow the beliefs. This family is trying to do what they feel is right for their child and trying to defend themselves using any legal argument they can. Big medicine, big pharma, and big government has everyone else brainwashed to believe that the allopathic way and model of current times is the only way. Four years ago, I watched my father-in-law die from chemo and radiation. I spent a lot of time on the “internet” researching alternative cancer treatments. And I am glad I did. I myself was diagnosed with breast cancer almost two years ago and I am undergoing an alternative natural treatment based on nutrition, a diet of organic and unprocessed foods and an herbal tonic called Hoxsey. I go to Tijuana, Mexico every six months for the Hoxsey tonic. Harry Hoxsey was in the US for many years treating thousands of cancer patients with an almost 80% success rate. He, at one time had the largest cancer clinic in the US in Houston Texas. He, like many others, was ran out of the US by the AMA and the FDA. I am an employee of a major medical establishment in SE Minnesota and they were not very happy with me when I said I was going to go to Mexico. The good news is, I am cancer free and feel the greatest I have in my life! So all of you people who want a pill for every ill and do not want to be responsible for what goes into your body and causes your disease, step up and take the poison and stand in line to be sliced and burned when you get cancer.

First of all, thanks for the link to my blog, Orac. I am honored.

I also agree with the gist of your post. I have seen what chemo can do to otherwise robust adults. I can only imagine what it does to 13-year-olds, and to their parents. I am unclear at what point the Hausers decided to join the Nemenhah organization. Maybe, as you suggest, they found it while doing medical research on the Internet and liked what they read. The Nemenhah only sells its “medicinals” to paid members (aka “spiritual adoptees”), so the Hausers had to join in order to buy the stuff.

The NU Journal article you link to mentions devices patented in the 1920s, but does not go into details. I wonder if those are the “purple ray” devices popular back around then. (A variety of tesla coil, btw) Apparently the Hausers were using them on Daniel, too. No harm done, but no benefits either.

What burns me most about this case is the sketchy background of the “elders” of the Nemenhah and their misappropriation of Native American culture and beliefs to try to evade federal laws and regulations. One elder (Landis) was involved in some dubious enterprise to raise reishi mushrooms for altmed cures. Another (Mooney, who commented on my blog) was the focus of a peyote use criminal case in Utah. As near as I can tell, their Native American-ness is about as authentic as a $3 bill. One blogger calls them “pinkskins,” New Age wannabe Indians.

Like I say in my blog post, the Hausers seem like nice folks, who are scared and certainly misguided. They’ve been duped by charlatans, and the ultimate victim of this whole fiasco is their son, Daniel.

I can only hope the judge in this case errs on the side of saving a child’s life, and rejects the specious “Native American religion” argument.

@Jud: I think that is a factor: if not the car metaphor specifically, people think of surgery as “going in and fixing it.” Also, it’s easy to understand what cancer surgeries are: they physically cut out the tumor. There’s a lot more misunderstanding and fear around the nasty chemotherapeutics.

Also, the effects they have really *are* pretty awful, though it’s often hard to know what’s the cancer and what’s the chemo.

Micki-
It is your choice to either accept or reject science based treatment, your body your decision. But there is a child’s life in the mix here and it is the entire society’s responsibility to assure that he gets the treatment that will allow him to keep on living and be able to grow up to be an adult. Science and rigid testing has shown that the way to do that is through chemo/radiation. If you think that your tonic will cure cancer then you need to do the same rigid testing on it and get it put into the standard regimen. Until you do that then it is irresponsible to allow children to be given it in lieu of proven treatment.

I wonder if the difference between the acceptance of surgery versus chemo is simply the delivery. By that, I mean that chemotherapy is an ongoing thing — you have to go back for multiple treatments, for many weeks, each of which may make you feel sick as a dog.

Surgery, by contrast, is (often) a one-time thing. Sure, you may have a nasty recovery from it, but they’re not sending you back into the operating room every week for months.

I go to Tijuana, Mexico every six months for the Hoxsey tonic.

Ah yes, Tijuana. Who needs Mayo or Johns Hopkins when you have glorious TJ? Where else can you get your cancer cured, hire the services of several bargain prostitutes, and get the worst case of Montezuma’s revenge all in the same fun-filled weekend?

Here are some photos of a competing clinic down there:

http://www.ratbags.com/rsoles/comment/clark08.htm

Really palatial, high end joint. The finest facilities.

You’ve been conned. Badly. I just hope that you don’t learn this the hard way.

Unfortunately claiming religious reasons is a very common tactic for many native american groups to use to try to get what they want in court. Here in Arizona, there are a couple of prominent lawsuits going on in which native americans are using religious claims as their main arguments. They seem to expect the argument to end the second they claim something is “sacred”. It has even had a stifling effect on the teaching of certain scientific topics in the public schools, and to my eyes seems similar to christian creationist tactics.

So what hoops does he have to jump through to be allowed to continue to say “no, it’s my body, my life, I don’t want it”? Maybe it’s the “wrong” decision, but life is full of opportunities for wrong and deadly decisions: jump off a cliff, torment big dogs, run into busy traffic, point a toy gun at an armed cop.

But is it an informed decision when he thinks that he has a 100% chance of surviving without the chemo?

I understand your point that a person (certainly an adult) ought to be able to say “the costs of survival are high enough that I chose not to take that path”. And I agree that a person should have that choice.

But this isn’t someone saying “dignified death is better than this treatment”. This is someone saying “The docs say I have a better than 80% chance of surviving if I take their treatment, but this guy over here guarantees I will survive if I forgo the treatment and pray hard enough. And the medical treatment scares me enough that I want to believe him.” That doesn’t sound like such an informed choice to me, especially when he’s so young.

Micki:

There is no such thing as “alternative” medicine, a fact made abundantly clear here many times. There is medicine, and non-medicine.

I myself was diagnosed with breast cancer almost two years ago

What kind of diagnosis? Was it simply feeling a lump? Orac has written numerous times about breast cancer and woo, and the fact that many “cancer” patients who are “successfully treated” with quackery either were never actually diagnosed with cancer, or had a surgery to remove the cancer, and then attribute their positive outcome to the herbs/reiki/quantum healing crap they followed, ignorant of the fact that the surgery was the effective treatment.

Do yourself a favour and see a real doctor; if you truly are cancer free, great, but you shouldn’t place your faith in something with as poor a track record as miracle tonics. If they truly worked that well they’d be the first line of therapy. That’s the way medicine works, you see: the “tonic” would be tried, shown to be effective, and then very quickly adopted as a treatment.

I had colon cancer 5 years ago, had surgery, then 7 months of chemo (4 weeks on, 2 weeks off). I was 50 and had no illusions about how I was going to feel. I wanted to show my family that I was not suffering unduly so they would not worry. I may be the only person who gained weight during chemo because my wife is such a good cook (even though everything tasted like zinc).
I tried to be a cheerleader for those who suffered more than I did, and held a lot of hands, most of whom survived.
I appreciate your posts, as they give me ammunition to present to my (otherwise) intelligent relatives who find reason to downplay science and turn to woo.

Micki’s comments have most of the hallmarks of pseudoscience, everything from a conspiracy to secrecy to anecdotes.

One thing that always drives me crazy about the conspiracy theorists amongst the CAM/Woo crowd is that if they think that Big Pharma is only concerned about profits (I would say it’s a big strategic issue), wouldn’t they do everything they could to get these secret treatments? I mean if there’s a wonderful cure available in Tijuana, I’m sure Big Pharma could buy it for a few bucks, and sell it for billions in the US.

It’s kind of ironic that these anti-science nutjobs believe that Big Pharma is intelligently evil on one hand, and completely stupid on the other.

And Micki. Really, you either did not have cancer or you are dying and don’t know it. I’m sure eventually Mayo will have to treat you.

Orac wrote:

What has to be considered is the risk of the chemotherapy versus the risk of death from cancer.

Every medication, every procedure has a risk. Real medicine knows this basic fact, and informs the patient appropriately.

AltMed Woomeisters, on the other hand, almost always state that they are perfect, without risk of side effects (well, homeopaths who are making water potions made of water won’t have any safety issues) and without stating any possibility that they might fail.

But I guess you’re right. People rather not hear about the negative.

I’m not surprised, unfortunately. I work with the ultra-Orthodox Jewish population, and quite a few women in my clinic refuse mammograms and stool occult blood testing on the grounds that “my Rabbi said not to”. Only once, upon inquiry with the particular rabbi and/or other women who follow him (who comply with the recommended cancer screening), have I found that claim to be true.

You get it. Thank you for that.

If I were the judge in this case, I would allow Daniel to remain in the custody of his parents. I think this kid has been through enough trauma already and doesn’t need more of it. Thirteen is a very young age to be separated from your family while you’re also dealing with a health crisis.

But I would also assign a social worker or case manager to monitor the family closely and make sure Daniel is going to all his medical appointments, counseling and whatever else is deemed necessary to give him and the family the support they need to get through this. And I think there’s also going to have to be some pretty intensive case management by the medical team to get the family on board, address their concerns and keep them in the information loop.

Medicine is not just about science and reason. At the end of the day, it’s also about human beings and about emotions and communication. We ignore this at our peril.

DVMKurmes, while you are correct that some genuine native bands have used “religious practices” to get special treatment (though up here at the northern end of the continental US, this has been mostly the only way they can get anything like what they were promised decades ago in the treaties), this case is not one of those. The “Nemenhah band” does not exist. It is not a Native American group. It is a sham. A complete and total lie. It was formed by a bunch of white guys who wanted to sell alt med, and realized that “indian secrets” would sell well — as well as potentially creating legal cover for their activities. It’s a scam all the way through.

That was an excellent insightful post, Orac. Thank you for writing it to counterbalance some of the ignorant-based screeds written by other “skeptics”. You give real skeptics a good name.

While I of course would never wish anyone to have to go through the experience of cancer, either themselves or by loved ones, I will say that having to go through the experience is extremely eye-opening and educational. It helps you to really think about what cancer means, what it does, and what it takes to get rid of it. You think about why doctors use things like radiation and chemo, and you understand more about why these things cause the problems they cause (historically, cancer treatment has been to kill the fastest growing cells, like cancer; unfortunately, other fast growing cells get hit, too, like hair and stomach lining; not coincidentally, serious side effects including hair falling out and nausea). You can learn what is all involved in a bone marrow transplant, and how much of an extreme treatment that is (and you see the results a couple of months later when the patient gets the chicken pox – whoops, what immune system?)

And you see it all because it saves lives, or at least extends them. Go through this? Or die? Yes, it’s easy to see the treatment rittling the body, but you can’t see the disease eating away the inside.

Yesterday, he was fine and happy and working. Today, he collapses during his daughter’s birthday party, and dies from pneumonia. He felt fine, but was dying. But it happened 15 years later than it would have had he not had the treatments that beat him down.

I was diagnosed with breast cancer at age 38. I went through surgery, radiation and 12 rounds of chemotherapy over the course of one year. Here’s the thing about chemo. It’s not fun my any stretch of the imagination but it’s also not what you see in the movies. I worked full time and raised my kids (who at the time were 5 and 18 months) and even went to the movies and to the occasional dinner. I am insanely radical about this case. This young man has no way of making a decision about his life and death at this age and frankly no way of really understanding what it means. Trust me, until you’ve looked at death, really looked at it, it’s not real.

I don’t know what the legal mechanisms should be but I want to give this kid chemo and lots of it, until he is “cancer free” or in remission. Then he can grow up and hate the government or become a homeopathic doctor if he wants but at least he’ll get to grow up.

Many operations are arguably as painful and difficult to recover from as chemotherapy; yet patients rarely refuse surgery.

Indeed. I watched (and helped) my friend throught both (she has ovarian cancer).

In her case, the most difficult thing was recovering from surgery. She would hardly walk (the nurses had to force her). She hated those stockings she had to wear before and for a while after. She hated it when they came to make her do the breathing exercises. Her whole body was disturbed and weak for months.

On chemo, she was tired, she had pain and weakness in her hands and feet, felt really crappy for about 2-3 days. Then she could go back to work, do yoga, walk.

In this case and in Cherrix’s case, you mention that both went through chemo. In Cherrix’s case, I seem to recall that he went through a whole course of treatment, and that it was unsuccessful; and then he rejected going through another course (different?).

As I read it, it wasn’t unsuccessful, it was what is called a “partial response”, i.e. the tumor is diminished but not completely gone. In cancer treatment, you can get a complete response (tumor gone, and you’re considered in remission), a partial response (tumor shrunk but still there), a stabilisation (tumor growth has slowed or stopped, but tumor has not shrunk) or no response (tumor continues growing – treatment has no effect).

An oncologist would never recommend, and would indeed discourage, a chemo course which has previously given no response, ie that as unsuccessful.

For whatever it’s worth, and I’m pretty sure that the answer is not much, when I was eight or nine I fell off my bike and hit the pavement. Hard. My parents took me to the emergency room to get stitches, since I was gushing blood out of my chin. The emergency room technician (nurse, PA, I don’t know) said that something looked wrong and asked me if I wanted an x-ray. I was scared out of my mind and said I didn’t.

A couple days later my mother decided something was really wrong and I needed to get checked. It turned out I had a broken jaw. I told her that they’d offered me one at the hospital, but I’d said no. My mom got pissed. Not at me, but at the people who would simply take the response of a scared boy without even consulting with his parents.

Cancer, of course, is many, many times worse than a simple broken jaw. It’s just too bad that this poor kid doesn’t have my mother. His fear has to take a back seat to his health, but the best advocate for the child should be the parent.

May I point out that most people don’t approach the problem the way the author seems to indicate they do. I honestly doubt most people think “Ooo… poison.. I’m scared.” If they did, they wouldn’t go for the first treatment.

It’s actually much simpler: they go in for the first treatment and end up feeling a LOT worse than they started. That’s a necessary evil of the process and in theory, in the end they’ll feel better – but the up front cost is VERY high.

This is something a LOT of people don’t get. It’s something that marketing people do because it affects purchasing decisions everywhere (and choice of treatment is a purchasing decision). People are far, far more influenced by up front cost than by long term benefits.

This is why the vast majority of people buy cheap PCs and why netbooks have taken off. The up front cost of these computers are far lower even if they’re more poorly constructed and have shorter lifespans (which is arguable anyway – but that’s a different discussion).

In the same way, the up front cost of chemo is huge and scary – it’s painful, it makes you lose your hair, it can cause symptoms *worse* than the illness in the short term.

THAT is what scares people off.

With no other options – they turn to whatever hope they can find – no matter how stupid it may seem to us (who are analysing it all far more rationally and logically than the person who is sick will be).

As for the body as a car question: the body IS a machine. It’s a collection of billions of cells operating semi-autonomously running programs stored on DNA. It’s a massively complex system that uses chemical signalling and one that we simply don’t understand well enough to tinker with – but that will come in time.

Ironically, the notion of a person as more than a system is a weird holdover from older religious views that even science can’t seem to shake fully – and a view that really is holding medicine back. Once we accept that we really are just a collective pile of cells – we can start looking at problems as *system* problems and fix things by reconstructing optimal configuations rather than seeing the body as indivisible lumps.

Reasoned, rational and compassionate post. There arte seldom easy answers and skeptics are as likely to have knee jerk emotional reactions to the specter of a dying child as a religious person in my experience. I have been responsible for a number of cases like this ending up in front of a judge. Often the parents are looking for someone else to make the decision that is contrary to their strongly held beliefs.

Micki:

I lost three grandparents, an aunt, and a few other loved ones to cancer denial. Every goddamned one of them could have been saved if they hadn’t lied to themselves. I nearly lost my mother to it, but the horror of my aunt’s death tipped the scales, and she got the mammogram. And now I have just learned that my father has been ignoring a melanoma for four months.

Do you know the rage, fear, and sickness I feel?

For the sake of everyone you love, GO GET YOURSELF TREATED PROPERLY. NOW.

Don’t put them through what so many families must endure. Don’t make your daughter sit at your bedside as you utter the most hateful, hurtful things about her in ways only a mother can because the cancer is eating your brain. I would do anything to take that memory from my mother, but I can’t. You still can.

I loved this quotation from the linked article. It is so telling of the utter vacuity of the alternative medicine practitioners.

“Shealy said he is not an oncologist or trained in oncology and does not provide cancer treatments, although he treats people who have cancer.”

He “treats” cancer but does not “provide cancer treatments.” What exactly does he do, then?

Calli Arcade, I understand that this particular group is a sham, it seems to blend in with the spectrum of “real” native beliefs and practice and all the new-age adulterations and scams. I live close to Sedona, and there are all sorts of people there some native, some pretenders, some just plain crazy who cater to the credulous tourists looking for native wisdom. This story illustrates one such case (http://www.nytimes.com/2007/03/13/us/13peaks.html)
One of the tribes involved in this lawsuit uses reclaimed water on their own ski resort on their own sacred mountain.
My main complaint is that claiming “sacred” or religious reasons as a defense is used far too often, whether it is a legitimate, long held belief or a scam. Here in the southwest, there are dozens of competing worldviews and sacred beliefs. Favoring one is likely to offend another.
I suppose I am just venting, but I would love to see a rational argument instead of appeals to the sacred.

All of this talk of faux aboriginal American lore reminds me of three words: Cherokee-hair tampons.

It’s a shame this kid is so far gone that he’d let himself die for a sham.

Orac – “Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.)”

Telling the truth is the right thing to do, even if some people will give you trouble for it.

People are far, far more influenced by up front cost than by long term benefits.

So true.

Just look at how hard it is to get somebody to modify diet or exercise levels to get a better quality of life (and in many cases, a better life expectancy).

And these nearly cause any suffering at all, just inconvenience and discomfort.

Accepting a cancer diagnosis and going through treatment without denial takes a lot of will and courage.

@ happeh

Yes, Orac is telling the truth. As far as I can tell, he always tells the truth about medicine.

As for poisons, I refer you to Paracelsus: “All things are poison and nothing is without poison, only the dose permits something not to be poisonous.”

“Just look at how hard it is to get somebody to modify diet or exercise levels to get a better quality of life (and in many cases, a better life expectancy).

And these nearly cause any suffering at all, just inconvenience and discomfort.

Accepting a cancer diagnosis and going through treatment without denial takes a lot of will and courage.”

Proponents of alternative “medicine” are often telling people that choosing alternative treatments for cancer is actually “taking full responsibility for you own health” and equals choosing “quality over quantity.” Thereby they imply that a long life is by definition without quality and people undergoing conventional treatment are nothing but spineless dopes. This is how people are lulled into thinking that their choices are motivated by their intelligence and powers of discernment, instead of by fear of harsh treatments and short-term thinking.

Orac – “Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.)”

Telling the truth is the right thing to do, even if some people will give you trouble for it.

Posted by: happeh | May 12, 2009 10:04 PM

Webster’s new definition of irony…..

@aftercancer

Here’s the thing about chemo. It’s not fun my any stretch of the imagination but it’s also not what you see in the movies.

Please don’t forget that there are different kinds of chemo, depending on what cancer you have. I had nearly four months of chemo (accoridng to one nurse, it was the harshest chemo they had) and it was quite as bad as in the movies, only more so, because it wasn’t over after 90 minutes. Going to the movies? Out for dinner? I was glad I could manage driving by bus to the hospital, but that was as exhausting as a marathon. So, yes, chemo can be every bit as bad as you always hear.
However, that was 10 years ago, I’m still alive, healthy again and thank my doctors for saving me. In the end, it was an easy calculation: Loose 4 month to chemo, gain many years of life afterwards.

My friend had a bone marrow B-cell lymphoma, and he got chemo for it. The first treatment session was by far the worst- he could barely speak. Several weeks into it, though, he was working and doing many of his normal activities again. He said that his oncologist warned him that the first time would be bad, because the most cells die right after you first introduce the chemo. Would this be true of a second course of treatment versus the first- would a second course be tolerated better? (My friend only needed one course, so I wouldn’t know.) In that case, this kid and his parents are really misguided.

@synapse:

It depends what he is given, in what dose and in what intervals. There are a lot chemo protocols, and they have different types of side-effects.

In cases of lymphomas and leukemias, a patient can be given what is called an “induction chemotherapy”, that is an agressive round of (curative) treatment, using sronger drugs or higher doses of the drugs to kill off most of the cancer. What is given afterwards in called “consolidation”, which aims to destroy the remaining cancer cells and/or prolong remission times and decrease chances of relapse.

Consolidation therapy, being less agressive, is generally better tolerated.

Depending on the case, it might be that your friend be given a second round of induction therapy (which will be harsh) followed by a consolidation. In that case the second course would ressemble the first. If it is a round of consolidation though, the effects would be milder.

Proponents of alternative “medicine” are often telling people that choosing alternative treatments for cancer is actually “taking full responsibility for you own health” and equals choosing “quality over quantity.”

And that is a delusion.

Dying choked by your tumor, or with bones destroyed by it, does not correspond to anybody’s definition of “quality time”.

I’ve seen an uncle go that way from untreated prostate cancer. At that time, screening was not widely done, and cancer could rarely be detected before in went in bones, by which time it was much too late.

It was… not pretty. I was very young when it happened, but I was told later that my uncle asked his family to help him die. Some quality time, heh ?

I can’t believe how ignorant and cruel people are. There are people who do successfully overcome their cancer with diet and alternative therapies. Why would anyone not be happy for that? Probably because there are more people employed by the cancer industry than have cancer. So anyone against alternatives is probably part of that industry. What would happen to the economy if people were “cured” of cancer? The cost of my herbal treatment is $3500.

Do some research on the history of alternatives so that you can understand both sides. It is much easier to say that everything is quackery than to study the subject and get the facts for yourselves.

The doctors ignore clinical evidence of success with alternatives, calling it anecdotal. They will have you believe that the scientific studies they have picked and choosen to back them up are the absolute truth. They, the drug companies and the American Cancer Society play the numbers to keep the cash flowing in.

As a patient and an employee of a major medical destination center, I had the opportunity to have an appointment with an oncologist for an opinion on alternatives. My sister had a friend with colon cancer who successfully treated herself with diet, supplements and juicing. This oncologist worked with her, monitoring her progress. Several years later, he himself got colon cancer and contacted her to see what she did. He couldn’t give me any help, because the law says only a drug can cure a disease. It’s true, the docs don’t want to take their own medicine.

And by the way, I was diagnosed with a needle biopsy at this wonderful place I work for and underwent a lumpectomy. I did not let them take my lymph nodes. Cancer was later found in the lymph node, I then went to Mexico. I still follow with tests at both facilities. The lymph nodes are clear.

I can run circles around all you so called “healthy” people. I’ll be having the last laugh. Good luck when you get cancer, one in three will.

The plural of anecdote is not evidence. Try harder.

Also, look up “spontaneous remission.”

@Micki, what’s the alcohol content of the alty meds you ingest?
I doubt your entire story.

Micki:

The doctors ignore clinical evidence of success with alternatives, calling it anecdotal.

All you have to do is present the actual real evidence that the “alternatives” are successful more than they fail. For every anecdote of success, there are stories about those who die while trying the alternatives.

If you search this blog you will find a few, like the one about the Orange Man (in case you did not know, Orac is a cancer doctor, specializing in breast cancer surgery).

I also remember years and years ago when I used to lurk on the Usenet there was a case of a fellow who documented his attempt to cure his colon cancer through alternative means online. I remember I did read his website, and then his obituary… both are gone. But still remains it the google archive of the announcement of his death on misc.health alternative, Freedom of Choice. Here is some of the posting of that message (Peter Moran is a retired oncologist, he has a website that I believe is called “CancerWatcher”):

Neil used alternative treatments, and dozens of them, for a rectal cancer. I feel rather sad at his death, as I got to know him quite well through his posts, and corresponded with him on a couple of occasions. I once tried to get him to reconsider surgery.

… The fact that Neil lived on for three years with only local symptoms such as pain, bleeding, bowel difficulties (including incontinence) and bladder symptoms simply suggests that he had a very slowly growing tumour with little metastatic potential. He thus had an excellent chance of being cured by surgery. Note that within alternative medicine medical opinion is held to be worthless and dominated by venal self-interest unless it happens include unwise predictions regarding the progress of a newly diagnosed cancer. It can then be employed to make alternative treatments look as though they did something, when the progress is well within the range of rates of progression of cancers.

… This is not a clear example of patient choice. It might be if the prospects of cure with alternative treatments were not such a closely guarded secret. I don’t blame him for wanting to avoid a colostomy, but his ultimate misery was far worse.

Good luck with the path you have taken, hopefully your journey will not turn into a cautionary tale like the ones above.

I know several people who were told to get their affairs in order because they only have a few months left who are still alive and kicking several years later, after trying alternatives. So I suppose all those people who seek alternatives and go to the foreign countries because they have been told to go home and die, should just go home and die. An alternative is not going to work. It’s not so black and white is it?

I could never feel that I’d been a “good” parent if I let a child of mine with a treatable cancer quit treatment. Internet support boards are full of parents of childhood cancer patients and you can get plenty of support if you go looking.

I’m sure this family loves their son very much, but they are not demonstrating it in a way that is in synch with my Anglo-Saxon culture.

I know several people who were told to get their affairs in order because they only have a few months left who are still alive and kicking several years later, after trying alternatives. So I suppose all those people who seek alternatives and go to the foreign countries because they have been told to go home and die, should just go home and die. An alternative is not going to work. It’s not so black and white is it?

Unless you can present actual data that the alternatives have some meaningful chance of working (which you can’t), it IS so black and white. I’ll also note that it’s pretty nearly certain that those people were told nothing of the sort, and instead were told (at most) that such was their likely result.

It IS that black and white. You seek alternative medicines because you’re dying and regular medicine has given up? Congratulations, if you leave out the lucky bastards who roll double sixes and spontaneously remiss, all you’re going to achieve is dying miserable AND poor.

The people who get lucky and live, despite diagnoses of death? Nothing to do with alternative medicine. Everything to do with getting lucky. For every altie who thinks that his diet of processed piss and vinegar saved his life, there are at least 20 in the grave.

I read what the alternative medicine proponents are writing. I simply cannot understand them. My husband went through 6 rounds of ABVD with Hodgkin’s Lymphoma. They were tough, but he got through them. He even gained 3 pounds of weight. Ten years later, he is still here.

My teenager was diagnosed with Burkitt’s Lymphoma. We did one round of induction that was absolutely miserable and five rounds of consolidation that were merely awful. We had two rounds of neutropenia that put him back in the hospital. He is doing all of his one-year checkups right now, and so far, so good. His oncologist, Dr. S. Siegal, at Children’s Hospital Los Angeles (plug!!) answered every question we had, told us the complete and unvarnished truth about nausea, hair loss, diarrhea, neutropenia, phosphorus, and many other things that would and could happen. The whole CHLA team supported my son in every way, allowing my son to feel in control as much as was possible. Dr. Siegal warned my son about how very sick he was going to feel, how long it would last, and how my son would gradually get better and finally feel good again. Every word of it proved true.

Without evidence based medicine, my husband and son would both be gone. At this moment, I have both of them, and I hope that both are here for a lot longer. Every minute is a treasure and I will do anything for which there is sound scientifically collected evidence to keep them as healthy as possible.

And by the way, I was diagnosed with a needle biopsy at this wonderful place I work for and underwent a lumpectomy.

Ah, so you did undergo convention treatment, but give the credit to the shady Mexican woo.

Sorry but this topic has been discussed here by Orac many, many times. For many breast cancers, the surgical resection is where most of the treatment efficacy comes from. Doctors then sometimes administer radiation to reduce the risk of local recurrence and chemo to reduce the risk of recurrence elsewhere. But this is just the “icing on the cake” as the meat of the treatment is in the surgery.

What I don’t get about alt med types is that although they have correctly deduced that big pharmaceutical companies are more interested in profit than actually curing people, they are completely blind to the same bias in alternative medicine companies. They believe Merck covering up inconvenient data about side effects, but they can’t even imagine that Hoxsey (for instance) would be hiding anything.

Indeed, Joseph C. Micki’s showing the classic woo pattern of “seek some conventional treatment and then credit the woo.” I hope the lymph node positive she had was just a false one and she’s in the clear.

But while that makes me feel better, it’s worse in some ways. Now she’ll be out there peddling woo to others claiming herself as proof, and some other poor fool and his family will pay the price. But she won’t be responsible, oh no…

And Micki can’t believe OUR ignorance…

Hoxley, BTW, died of prostate cancer. He tried his own “cure” and it did nothing, whereupon he had surgery & standard medical treatment.
His faith in his own product was sadly lacking.

In the end only the boy and/or his parents know for sure why they have made these particular choices. Being a parent is a hard job, and children suffer in the best of circumstances when parents are lacking in skills, judgment, maturity, experience, intellect, financial resources, emotional health. So many ways for kids to suffer, so many ways for parents to fall short. Most of the time it is not life and death stuff. This situation is really sad, and if the court won’t make a different decision, perhaps the parents will be exposed to different points of view and change their minds.

@ Micki
Good luck girl! My annectdote: Mom (breast cancer) had the surgery, went through radiation but refused chemo.
The cancer had metastasized (chemo might have stopped it) and started dissolving her bones. Increasing calcium concentration in her blood made her inchoherent. Funeral was earlier this year.

Of course, denial can go both ways. I’ve known people who’ve had so much faith in modern medicine that they believe it will save them long past the time when the doctors have been telling them that it won’t. They insist on heroic measures, and when it comes to those kinds of measures, you can always find somebody willing to do it. After all, on the surface, it’s not bad to intubate someone. They need to breathe, after all, and if they’re willing, why not? Where there’s life there’s hope, right? But when a person is at the end of their life, the discomfort of intubation isn’t justified. It won’t save them, so it may be kinder to let them pass. I had a relative who had that particular problem, and I fear that my maternal grandparents (whose health has become increasingly fragile lately) will go the same way, insisting on heroic measures for no good reason, making themselves miserable when they could be enjoying life a little longer.

I remember reading about brilliant character actor Andreas Katsulas (known to SF fans as G’Kar on Babylon 5). He died of lung cancer a few years ago, the consequence of a dedicated smoking habit. (There are many stories of people encountering him in the alley behind the studio, in full Narn makeup, with prosthetics and red contacts, enjoying a smoke. A surreal image, and one he delighted in.) When he was diagnosed, the doctors were straight with him — the cancer was too advanced, and he would not live more than a year. Indeed, a year later, he was dead. But instead of living in denial, he made the most of that year. He quit smoking immediately, and joked to friends that since being told he was dying, he’d never felt better. He started eating right and exercising, and taking extra time to be with friends and family. Eventually, of course, the cancer grew, and he became gravely ill and ultimately died. But he’d made the most of the time he’d had before that, and I have to say I really admire that. I’m not sure I could be so honest with myself.

“He couldn’t give me any help, because the law says only a drug can cure a disease. ”
So, Micki, which law is that?
And, if alternative medicine cured your cancer, why aren’t you giving all the details of the treatment to the oncologists at this medical place where you work, instead of commenting anonymously on a blog?

Yeah, Callie, Katsulas’ death was a real blow to the gut for his fans. Straczynski had it right…the man became a giant onscreen when he put on that role, just dominating any scene by his mere presence, and offscreen all the more so for his apparent personal humility, and his excellent handling of his diagnosis.

As long as we’re exchanging anecdotes, here’s one of mine: A woman with multiple myeloma, a treatable but not curable disease, seeks help in various forms of woo that promise cure. She surfaces at the hospital where I was doing my residency in such horrible pain that she could not stop screaming until she got enough morphine to (initially) put her to sleep, having spent all her money, and with multiple bone fractures.

This is a more typical story than the “miracle cure” testimonial: patient spends all their money on woo that doesn’t work and ends up in horrible pain. I’ll take chemo, if it comes to that, thanks.

He’s 13. He’s old enough to throw a monkey wrench in the works, pulling out IVs, not sitting still, etc, etc, etc. But he’s too young to understand the consequences of what he’s doing. Why waste the time of the docs? Let them treat people who desire treatment, if they feel thy have to do something, give him 5o mls of morphine IV push, and be done with it.

Um…because he’s a human being? Why would compassion stop at the point that he makes a dumb decision? Why would I stop valuing him if he has ideas I don’t like?

If it’s a matter of triage, of sufficiently limited resources that others must go without, fine, leave him aside. If it isn’t, why wouldn’t you try to save him despite himself? At least within the bounds of ethics and rights. If he was an adult, at least then I’d say his rights preclude forcing him, but I’d still try to convince him to save himself.

I’ve read through all this and found it stimulating and insightful and while I appreciated that people want to save Daniel in spite of himself because he’s “only” 13 years old, I have to disagree. Kids are dying of hunger and disease and war every day, why are kids in rich countries so much more special? There’s no way to undo what the parents are doing in leading him to this goofy “belief system” (by the way, aren’t ALL religions “fake”?) without some kind of reverse brainwashing–which would have its own ethical implications.

I know that death is the enemy for doctors (and most people), but it isn’t clear to me whether or not Daniel understands that he might very well die. Maybe he accepts that. There was a case of a young girl who had already had dozens of surgeries for an incurable condition who went to court to get the right to not have any more and she won. (It may have been in England). My point is that she seemed to show more maturity than some of the adults who were totally focused on saving her at any cost rather than her own view of her quality of life. It’s not an absolute parallel to Daniel’s case, but I’d like to know more about the whole thing. Thirteen is young, but it’s insulting to say that he can’t make this decision–the real question is: does he have all the information? Thirteen year olds in Africa are raising their siblings whose parents have died of AIDS-related disease and 13-year-old girls (young women) are mothers in many parts of the world. Be careful about projecting our cultural ideas of maturity onto everyone else (not meant to imply that I necessarily thing it’s a good idea for a 13-year-old to be a mother, just that it’s not uncommon and that it doesn’t mean she can’t do it well just because of her age).

I’ve tried using the search feature, as I’ve tried reading through all the comments, here and on the other science blogs, and really can’t believe that no one has mentioned the Cherokee Hair Tampons episode of South Park from a few years back. Bogus “native american” medicine, really sick kid with an easily treatable disease, it has it all. Too tragic that there’s not a real life version of the Cheech and Chong characters willing to admit to the parents that it’s all bogus and the kid needs to go to a real doctor. (Never thought that I’d make a statement along the lines of “if only there were a real life Cheech and Chong”.)

Too bad SP isn’t really appropriate for 13 year olds, or else someone might slip him a copy of the season 4 dvd set

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