Cancer, cults, and kids

I've been reluctant to write about the Daniel Hauser case. I don't even want to imagine what his parents are going through. If you're not a parent, I can't explain it to you, so you'll have to trust me---having a kid with a life-threatening illness can drive you to do the unimaginable.

And what Daniel's parents have chosen to do is nearly unimaginable, but until you've been there, judgment must be tempered by compassion. But that compassion is only for the parents and the patient, not for those who are supporting their horrible decisions.

The basics

Daniel is 13 year old boy with Hodgkin's disease, a form of cancer that is curable with radiation and chemotherapy. Without it, it's deadly, and the death isn't pretty. I've diagnosed patients with Hodgkin's and had the pleasure of watching them go on to live normal lives. None has ever regretting being treated.

Daniel's parents apparently belong to a cult called Nemenhah, some sort of New Age-Christian gamisch of beliefs with a Native American patina. Like most cults, it wants your money, your absolute obedience, and ideologic purity. In return you get to abandon your money and your access to modern medical care.

Daniel's parents, after one cycle of chemotherapy, decided to follow the Nemenhah dictates and eschew modern, curative medical care. They may or may not realize that the suffering they are inflicting on their child is much worse than anything he could experience with treatment. When the courts ordered him back to treatment, the mother took Daniel and ran. She is currently wanted by the police.

The basic ethical principles here recognize that children, while autonomous beings with rights, have a limited decision-making capacity, and must rely on adults, preferably their parents, for guidance. If the parents cannot provide a safe environment, the State becomes involved, as it did in this case.

Nemenwho?

This cult appears to be a collection of Anglos under the leadership of a guy who immodestly calls himself "Cloudpiler". As with most cults, it relies on the Leader's direct communication with the Divine, as laid out in their "constitution":

We adhere to the Eighteen expressions of the Sacred Sahaptan Healing Way as among the Primary Fundamentals of our faith worship, and the foundation of our society. They are:

We, Nemenhah are a people dedicated to teaching the Sacred Sahaptan Healing Way and of principles contained in the written records of the Ancient Nemenhah, many of which are found the "Mentinah Archives," as well as the sacred writings of indigenous peoples around the world. As such, we believe that no person stands above another; all people are not merely created equal, but are equal in the sight of the Creator. We are Nemenhah!
We believe and adhere to all the principles of the Sacred Sahaptan Healing Way, as restored to Phillip (Cloudpiler) Landis, by direct revelation from his Grandfathers, and through the ancient tradition of Wyakin, which include but are not restricted to:

[...]

iii) The use of natural healing methods and materials, and of spiritual guidance for the
healing of the body physical and the body spiritual of the individual, family,
community, nation, and world.

And of course, after establishing authority and control, the real message:

The Sacred Giveaway

The Nemenhah Seminary is not a Commerce-Based Program. It depends entirely upon the generous donations of its Members for support.

The Sacred Giveaway is the method by which the Nemenhah Program is supported. The Suggested Offering amount for the Ceremonial Service of Individual Spiritual Adoption is $250.00 initially and $100.00 annually. Thereafter, Nemenhah Members of good intention, willingly make regular, monthly offerings from out of their own financial stewardship. They do this prayerfully, relying on Spirit to direct them in the amount or kind of offering that is most appropriate. They never neglect this part of the Adoption Covenant, understanding that if they do, the Nemenhah Band cannot continue in its important work and its offering to Humanity globally.

All of the Educational Modules of the Core Curriculum are offered with the request that you make a donation of $30.00 (or as much as Spirit directs you) for each module.

If you have already been spiritually adopted and you already made your initial $250.00 offering, please remember to support the program by making additional offerings for the Course Modules on a regular basis. All offerings are strictly voluntary and non-refundable.

You cannot know how much your offerings are appreciated by the Mentors and staff of Nemenhah. It is your generosity and demonstration of faith that makes this program successful and allows the Band to promote and forward this important work for all. Thank you!

Their "constitution" reads like an unholy union of Scientology and Mormonism.

But the main point is that to an outside observer, Nemenhah looks like a cult, and part of that cult is the requirement that the Hausers sacrifice their child.

Now child sacrifice is not unique in religious history. It is a fundamental part of the stories of Judaism (Isaac), Christianity (Jesus), and Islam (Ismael). However, in the modern context, outside of wars and suicide bombers, religions don't usually require child sacrifice. (Hmm...that's a pretty big exception.) But for whatever reason, the Hausers seem to feel it is their religious obligation to let their child die, and on some level I think they know he will die.

Still, while they bear a great deal of culpability, it is tempered by their inculcation into the cult, and they will suffer for their choice for the rest of their lives. But those who are enabling their murder of their child need to be called out: the "health freedom" idiots who think any State involvement in personal health decisions is wrong; the altmed folks (like Mike Adams) who don't "believe" in chemotherapy; the cult leaders who have given them "guidance". All of these people are guilty of helping to kill a child. It sickens me that they can still sleep at night.

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Over the last week, I've written about the case of a 13-year-old chemotherapy refusenik named Daniel Hauser, who lives in Minnesota. After having been diagnosed with a highly curable form of cancer, Hodgkin's lymphoma, back in February and having undergone one cycle of chemotherapy that apparently…
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Over the last couple of weeks, I've been blogging regularly about the case of Daniel Hauser, the 13-year-old boy with stage 2B Hodgkin's lymphoma who, after one course of chemotherapy in January, refused to undergo any more, citing a faux religion run by a woo-meister naturopath and Native American…

According to Daniel's testimony, the Hauser parents (or maybe just mother) has only been a Nemenhah follower for about 18 months.

Daniel clearly has no real understanding about his disease, what chemo is, and why it is necessary.

Daniel cannot read and (according to his mother) has "memory problems" -- related to some incident during his gestation.

The transcript: http://www.courts.state.mn.us/Documents/0/Public/Other/Hauser/Hauser_Tr…

The final argument: http://www.courts.state.mn.us/Documents/0/Public/Other/Hauser/GAL.pdf

These cases are always sad. Perhaps just as sad, the parents and their supporters will undoubtably still think that they were right after he dies.

By The Blind Watchmaker (not verified) on 20 May 2009 #permalink

I think of course that Daniel should be treated for his disease.

But I also wonder how much the medical and health professions take responsibility?

What I mean is that the way medicine is often practised dehumanizes people. It is often fast, brusque, cookie-cutter and that isn't even getting into the maniacal methods of HMO's or the restrictions of insurance or the vast lack of healthcare for many people.

Then we get into pharmaceuticals which have profits many times the next most profitable companies and like most business hide evidence that would harm their products and boost the use of their products to expand the market where it isn't needed. They fund research, they fund conferences, and they have an influence, if not a grip, on some doctors. Unfortunately though that affects people's health adversely and furthers mistrust.

So--if you are treated like a lowly unintelligent peon and don't have many choices about your health care and mistrust the drugs you're given...doesn't that make you vulnerable to searching for something else?

I really don't think this problem is caused by the cult-like religion, although it is exacerbated by it. I think this religion is just a convenient excuse, and the real problem is that the mother is (understandably) fearful and also distrustful. If it weren't for the Nemenhah religion, she likely would have found a different excuse. I think that Danial is only refusing treatment because his mother told him to. It's heartbreaking to think of removing a kid from his parents, especially during the most difficult time in his life, but it is becoming clear that foster care is the only way to save this boy's life. I think the mother is the main obstacle in the way of Daniel's life-saving treatment.

Lillan wrote: "What I mean is that the way medicine is often practised dehumanizes people. It is often fast, brusque, cookie-cutter and that isn't even getting into the maniacal methods of HMO's or the restrictions of insurance or the vast lack of healthcare for many people."

"So--if you are treated like a lowly unintelligent peon and don't have many choices about your health care and mistrust the drugs you're given...doesn't that make you vulnerable to searching for something else?"

If you're correct, then I'd expect to see less of this sort of thing in Canada, France, or other countries that aren't afflicted with the US healthcare system.

I don't think this is the case. You're in Toronto, how often do Canadians eschew proper medicine for alternative woo?

I'm in Canada - woo to the left of me, woo to the right!

Yes, some doctors are fast and brusque. Because there aren't enough of them to meet demand, those docs stay in business. But some are great, like the one I saw this morning - fast, yes, but likeable, funny, a good communicator and reassuring. Don't diss a whole profession because not everyone performs optimally.

Hope they find the kid, and he gets treated. Life can suck. But early death must suck way worse.

Lillian, i've been thinking about your comment...a lot.

I think of course that Daniel should be treated for his disease.

But I also wonder how much the medical and health professions take responsibility?

What I mean is that the way medicine is often practised dehumanizes people. It is often fast, brusque, cookie-cutter and that isn't even getting into the maniacal methods of HMO's or the restrictions of insurance or the vast lack of healthcare for many people.

While improvement is a worthy goal, it is what it is. Modern medicine provides the best route to health ever practiced. The fact that some people are "turned off" by it is unfortunate, but the fact is, you can't make everyone happy. If you prescribe an ACE inhibitor to someone with proteinuria, you help save their kidneys whether or not you made them feel, i don't know, welcomed or whatever. Perhaps people are looking for fuzziness in the wrong place.

Then we get into pharmaceuticals which have profits many times the next most profitable companies and like most business hide evidence that would harm their products and boost the use of their products to expand the market where it isn't needed. They fund research, they fund conferences, and they have an influence, if not a grip, on some doctors. Unfortunately though that affects people's health adversely and furthers mistrust.

This is plain, unmitigated bullshit. Meds are cheaper now than they've been in years. Most of my patients get away with spending pennies a day, even with bad medical problems.

So--if you are treated like a lowly unintelligent peon and don't have many choices about your health care and mistrust the drugs you're given...doesn't that make you vulnerable to searching for something else?

This is begging the question, but if it were true, would you toss out your health in order to "punish" the system? Srsly, when a patient tries to punish me by not taking their meds, I sleep just fine.

You Comment below regarding the Nemenhah religious group as:

"some sort of New Age-Christian gamisch of beliefs"

Let me correct you and say there is nothing within this religious sect that either is or claims Christianity in any way shape or form. They claim there is a Creator, but they don't correlate that with the Christian, Jewish, Islamic or Hindu god for that matter...............steve

Yes, I see...i think what I should have indicated is that the Hausers apparently practice a gamisch of christianity and new age-y beliefs.

they have an influence, if not a grip, on some doctors.

I resent this. It keeeps coming up on every blog I read, and on my own blog.

They have no influence, or at the very least, much less influence on me, than Big Supplement has on your alternative medicine practioner. While I will reject bad treatments when the evidence (the balance of evidence, not just the evidence by the makerof the drug) shows that it is not effective, your homeopath will prescribe you the same damn water, no matter what the evidence shows. And then he'll make the same amount of money off of it. Your naturopath will sell you products that he/she stocks and sells his/herself.
Despite this, somehow, it's the MD/DOs who have the conflict of interest, over some stupid pens and some idiots over at Harvard.

Doctors generally aren't "owned" by big pharma.

Heh, let us not blame the family, the crazy religion or especially the doctors without actually knowing something about the case. Read the court summaries, they are pretty interesting. The family to give them credit took the kid to three oncologists, and some alternative practictioners. ALL of them ( all of them, including the alternative types) supported him being treated with standard treatments. The primary doctor sounds incredibly compassionate ( actually came back early from a family camping holiday to try and convince the mom to proceed with treatment).

The boy started chemo then freaked out. Supposedly his mothers sister died, supposedly from chemo ( ???), or that is at least what his mother told him. I wonder if both mother and son freaked out and if there really was a death in the family related to chemo.... MIght explain everything.

Anyway if you all read the court documents i think you will see this was not lack of compassion from doctors , which happens, but not here.

PalMD sounds like a passionate doctor who genuinely cares about the sick. We need doctors like this. Respectfully, I believe when caring doctors like this will think outside the box, they become even more effective at helping their patients.

My comments here are not about condoning the Hauser's case or supporting PalMD but to educate. Hopefully, PalMD and others will be willing to read the Journal of American Medical Association July 26, 2000; 284(4):483-5 This article was a follow-up to a December, 1999 report from the Institute of Medicine which addresses the 225,000 deaths per year from iatrogenic causes. Iatrogenic is defined as "due to the action of a physician or a therapy the doctor prescibed" (source: medicinenet.com).

This is not about doctor bashing. We need a paradigm shift. Our current "health care" system is really a "disease management" system. We can do better than this. For example, we know the effects of nutrition on health (there is plenty of research backing it in even the traditional medical journals). Remember the time when people believed the earth was flat or the 1930's when smoking cigarettes was promoted as a digestive aid? Sometimes it's good to think outside the box.