Daniel Hauser, Child Neglect, and Freedom

We recently discussed informed consnt as it applies to the Daniel Hauser situation. Since then, Jane Doe left a comment on that post which I felt justified me explaining my full thoughts on the subject.

Jane Doe appears to be exactly the kind of person who I fear.  As far as I can tell she’s a well spoken, polite, intelligent woman, who cares about her children. Despite this, she this is about freedom.

It’s not.

It’s about child neglect, and informed consent.

She feels that this case is about the medical establishment taking away our rights. She’s in favor of alternative (She prefers the term holistic) medical treatments.

I don’t prefer the term holistic. The implication of that term is that conventional medicine is not holistic. This just isn’t the case. When a patient comes to see me, I am treating the whole patient. I’m not a fan of the term alternative either, because it paints these treatments as equal too, but separate from regular medicine.

But I digress, what’s important about Jane, is her opinions about the Hauser case, and why they’re wrong. Forgive me if you’ve read my comments all over Orac’s blog, because this is many of the same arguments, hopefully clarified enough to be legible.

As I said above the fold, this case is entirely about
1) Child neglect.
and
2) Informed consent.

I’ve said this countless times, and multiple blogs. Yet noone ever addresses those points when they argue.

Jane said

I don’t know if the youn man understands his illness, but the ‘lawyers’ and doctors threats took away the freedom to learn what choices there were.

This is entirely the point. It’s not just that we don’t know IF the young man understands his illness. In the comments on my previous post, you can see the court transcript. It is 100% clear he does not understand his illness.

He’s 13! How much do you think a 13 year old is capable of understanding here? From neurology, psychiatry, and generations of parenting experience, we understand that 13 year olds don’t have entirely developed minds. Most of them are still very concrete.  Abstract thought is still in its very early stages.

What does that mean? It means that most 13 year olds aren’t capable of judging the value of a sacrifice now, to justify a benefit later. That’s why when you’re 13, it’s much easier to see the value of playing Goldeneye, 007 on nintendo 64, and not so easy to see why you should be studying for your algebra class. Mom, dad, I know you’re reading this, and smirking. As well they should be, at 13, you aren’t capable of undertsanding that.

He certainly wouldn’t be capable of judging the value of chemotherapy and pain now, vs the possibility of dieing soon without chemotherapy. The “soon” just doesn’t register apropriately. The “dieing” just doesn’t register appropriately.

Furthermore, his mother lied to him. She told him that the herbal treatment she found on the internet is 100% effective in treating Hodgkin’s Lymphoma.

He doesn’t think that he’s choosing between life and death. He thinks hes choosing between chemotherapy, and equally effective herbs. It is 100% clear that herbs are not effective for Hodgkins lymphoma, and that chemotherapy is effective.

IF he understood the information involved here, you could have a discussion about choices in healthcare here. If he knew what the prognosis of untreated (by chemotherapy) Hodgkin’s lymphoma is (poor), if he knew how effective chemotherapy is (90% at his stage at diagnosis), and if he understood the consequences of NOT taking chemotherapy.

Daniel doesn’t understand any of that. So no argument starting with “well Daniel has a right to do X” applies. Just like your 2 year old doesn’t have a right to refuse shots because they hurt.

Now if you want to talk about his mother’s rights, thats a different discussion. . His mother also clearly doesn’t understand the risks involved. She has made her decision, from what we can tell, based on her religious ideas.

Thats where we get to child neglect.

You can refuse whatever treatment you want for yourself because of your religion.

You can’t make that decision for your child.

You can say “Antibiotics steal the soul, so I won’t take them, I’d rather die of urosepsis.”

You can’t say “Antibiotics steal the soul, so now my 13 year old son will die of urosepsis.”

That’s child neglect.
When there is a known, very effective conventional treatment, that is considered standard of care, for a potentially life threatening illness, a parent cannot deny their child that treatment based on their religion.

You can sacrifice yourself.
You can’t sacrifice your child.

That’s all there is too it.

The example I bring up here again and again is Christian Science. Christian Scientists don’t believe in all sorts of medical treatments. One specific one is no antibiotics. If a Christian Scientist infant ends up in your ER with a fever of 102, you give that child antibiotics. The parents’ objections about religion don’t matter. That fever in an infant demands the treatment, religion or no. To not give that treatment is child neglect. It’s such a textbook example that this was explicitly a question on my practice board exam.

Don’t say “well my child will obviously follow my religion.” Statistics don’t bear that out in this country, but even if they did, it’s not a sure thing, and the courts have already said “you can’t make that call for your child.”

Now, if you’ve received standard of care, you’re more than welcome to stop giving further care. If Hauser had already received the normal standard chemotherapy, and either had a recurrance, or failed chemotherapy, it would be a different story. If that was the case, the family would be more than allowed to withdraw care.

Jane also said

This case represents the biggest concern I have had for many years…and that is the rights of the family and individual making decisions in thier healthcare being over turned by the state, government and medical establishment.

This is not about the rights of the family. It’s about the understanding of the family. You can make decisions about your healthcare, but they must be informed decisions. When they are not informed decisions, it’s hard for us to stop you from making them for yourself, we dont’ try. We can however, stop you from killing your child through ignorance. Sometimes. Sometimes we can’t. When we can’t it’s a tragedy. It’s not an exercise in freedom.

If Daniel’s mother had understood the options, and, separate from her religious beliefs, decided that there was a good reason not to do chemotherapy, this would be a different case too. If she said “Both Daniel and I understandd that not receiving chemotherapy is likely to result in his death. We understand that there is evidence that herbal therapies don’t work, and that my religious beliefs are no reason for him not to receive chemotherapy. I understand the actual risks and benefits of chemotherapy, but we would both still prefer that he not receive treatment,” then we’d be in a different situation.

In that case, Daniel and his mother would have made an informed decision that I disagree with personally. But thats their decision. That would be their right. That would be their freedom.

 Freedom is only freedom with understanding. “Freedom” without understanding is really living in bondage to your ignorance.

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14 Comments on “Daniel Hauser, Child Neglect, and Freedom”

  1. ddw11 Says:

    “Freedom” without understanding is really living in bondage to your ignorance.

    Hear Hear!

    You’re right. This is not about the freedom to make decisions, its about being competent to make decisions.


  2. It is true that children are not capable of making these types of decisions. That is why the have parents.

    The problems with your assertion is that it makes assumptions about what is “the” source for determining what is “effective”, what is the “standard of care”, and what information exists in order to be “informed”. Yet, there is inherent blindness and conflicts of interest in this industry that no one seems to want to talk about.

    When the companies making the drugs are the same ones funding the research, influencing medical school curricula, and incentivizing physician referrals – AND the organization charged with oversight is making money from the ones it oversees – that does not result in “informed” anything. It results in propaganda.

    Does this mean that all drug medication is worthless? Of course not. However there has been for years a concerted effort by pharma companies to control the market so to speak and limit the availability of other viable treatments that threaten their profits, especially when it comes to cancer. It does not take a rocket scientist to understand why chemo is considered the most effective treatment when in fact the information, testing, and peer reviews are funded by the manufacturers of the chemo drugs.

    There are MANY effective treatments for cancer that will never be fully evaluated publicly simply because it would cause these companies to lose too much money. The natural alternative that removed an aggressive cancer from my body (and still leaves my oncologist speechless) is even listed on the FDA’s list of “Fake Cancer Cures” (although the government itself admits that this treatment does indeed fight against cancer).

    You prefer not to call these methods “holistic” because it assumes that conventional methods are not? Well, the irony is that you are making the same implication in reverse when you call these drugs conventional or traditional. The traditional treatments in fact would be the herbs, plants, and vitamins which pharma companies research and often try to mimic in developing their patented drugs.

    I was not aware of many of these issues myself until getting involved in supporting ethical education training in clinical trials (at the behest of the pharma companies themselves).

    There is a huge, sick pink elephant in the room, and of course no one wants to discuss it. Perhaps a good dose of chemo would cure this elephant?

    • ddw11 Says:

      The problems with your assertion is that it makes assumptions about what is “the” source for determining what is “effective”, what is the “standard of care”, and what information exists in order to be “informed”.

      1) Multiple stage trials in cell culture, animals and humans to establish safety and efficacy.

      2) Multiple, independent sources are involved in clinical trials. Multiple, independent sources are involved in replicating data.

      3) Peer review in independent journals.

      4) Continued monitoring of patient outcomes and side effects after drugs go on the market by, you guessed it, multiple, independent groups.

      Do you doubt the scientific method? I ask this not to be condescending, but to ask what method should be used for determining what is “effective?”

      I’ve grown tired of the accusation that pharm companies are intentionally poisoning patients with drugs that don’t work or are not the most effective we have. You realize that drug companies could market herbs as well? The first drug company that proved herbs worked for cancer would receive ALL CANCER DRUG BUSINESS. It is in each and every one of their best interest to be the first to show a less toxic substance was effective against any form of cancer. If you are going to posit a conspiracy theory, the conspirator needs to actually have motivation to perpetrate a conspiracy.


    • It is true that children are not capable of making these types of decisions. That is why the have parents.

      Yes, and I addressed the parent in my post too.

      The problems with your assertion is that it makes assumptions about what is “the” source for determining what is “effective”, what is the “standard of care”, and what information exists in order to be “informed”. Yet, there is inherent blindness and conflicts of interest in this industry that no one seems to want to talk about.

      No.
      It doesn’t do that.
      You only say that because you run an End-Times based ministry that hold a large number of positions directly contradictory with science. So infact, YOU have a conflict of interest on believing science is a “source” of information here. I’m sick of denialists using the pharma shill gambit to blanket attempt to discredit science as a whole. This makes no sense.

      Until you can explain away your conflicts of interests, you aren’t allowed to complain about anyone elses.

      Besides that conflict of interest, you also mention your personal journey with cancer.

      I’m very happy that you are cancer free. Cancer is a mean, and nasty disease that noone deserves to have influence their lives.

      Without knowing the details of your particular cancer, I can tell you nothing about the effectiveness or ineffectiveness of chemo for it, or the chance that you would have a spontaneous regression.

      As Orac at Respectful insolence have covered many, many times, lots of cancers have a small but significant chance of spontaneous regression. Whether you believe this to be God’s miracle, or random chance doesn’t change the fact that it is not proof of herbal therapies working.

      When the companies making the drugs are the same ones funding the research, influencing medical school curricula, and incentivizing physician referrals – AND the organization charged with oversight is making money from the ones it oversees – that does not result in “informed” anything. It results in propaganda.

      Hodgkin’s lymphoma is a cancer regimen which we have been using for decades. It has been confirmed using research funded by many sources other than drug companies. Your assertion that drug companies fund all research is completely unfounded, and you don’t know what you’re talking about. Provide some evidence for your comments.
      I don’t have any idea what oversight agency is making money from the ones it oversees in such as way as to generate a conflict of interest. Perhaps you could be specific, give us an example, and a citation so we can see that this is true.

      I hate the “influence medical school curricula” argument. I don’t go to Harvard. Outside of that one school, medical school professors and curricula are based entirely on known evidence, our professors don’t teach on subjects they have potential conflicts of interest on. For example my school has one of the leading experts on multiple sclerosis, but he can’t teach on that subject because he was involved in research funded by a drug company that makes MS drugs.

      Does this mean that all drug medication is worthless? Of course not. However there has been for years a concerted effort by pharma companies to control the market so to speak and limit the availability of other viable treatments that threaten their profits, especially when it comes to cancer. It does not take a rocket scientist to understand why chemo is considered the most effective treatment when in fact the information, testing, and peer reviews are funded by the manufacturers of the chemo drugs.

      This is ridiculous. Big Supplement has been perpetuating this myth, at the same time that they constnatly argue that they shouldn’t have to prove the effectiveness of herbal therapies. The reality is that any herbal therapy proven to work would genreate billions of dollars. Any such therapy would be investigated thoroughly, and the drug companies would try to create purified preparations that they could patent. It’s not that far from how Taxol was investigated.

      This argument assumes that Big Pharma doesn’t want to mkae more money, off of NEW drugs.

      And again, you’ve repeated that the drug companies fund the peer review, the testing, and the information/research. This isn’t true, there is independant verification of anything that happens in science. Your argument is ignorant of the process of science.

      There are MANY effective treatments for cancer that will never be fully evaluated publicly simply because it would cause these companies to lose too much money. The natural alternative that removed an aggressive cancer from my body (and still leaves my oncologist speechless) is even listed on the FDA’s list of “Fake Cancer Cures” (although the government itself admits that this treatment does indeed fight against cancer).

      Oh if only this was true. The companies wouldn’t lose money. They’d create new products integrating those cures, patent them, and make sky high profits. You don’t understand business apparently.
      Your oncologist is speechless because you likely had a spontaneous regression. These things happen, and when they do, as doctors we are moved, and very happy. But we don’t suddenly say “well now, that dandelion you’ve been chewing on has anti-cancer properties.”

      You prefer not to call these methods “holistic” because it assumes that conventional methods are not? Well, the irony is that you are making the same implication in reverse when you call these drugs conventional or traditional. The traditional treatments in fact would be the herbs, plants, and vitamins which pharma companies research and often try to mimic in developing their patented drugs.

      I don’t see the irony here. The holistic people claim that, for example, homeopathy is holistic. But homeopathy doens’t even in theory treat the whole body, or the disease process. Homeopathy explicitly attempt to treat individual symptoms of a disease. Thats not holistic, thats crap. Thats completley aside from the fact that homeopathy would break all of the laws of physics if it worked.

      We call chemotheraputics allopathic medicines conventional or traditional because it’s what doctors traditionally, or conventionally use. I don’t conventionally hand my patient willow bark for their headache, I tell them to take aspirin.

      Pharmacognosy, which I suggest you look up before talking about here, is an incredible science whereby we can learn from nature to create drugs. Thats true. Saying that Big Supplement is using pharmacognosy is infact, incorrect. They’re using marketing, and bull, to make people think herbs work.

      I was not aware of many of these issues myself until getting involved in supporting ethical education training in clinical trials (at the behest of the pharma companies themselves).

      Ah yes, the “I’m coming from the inside” story. Evidence aginst you actually. You’re saying Big Pharma is educating people to stay honest, ergo, they must be dishonest. Bravo ma’am. Bravo.

      There is a huge, sick pink elephant in the room, and of course no one wants to discuss it. Perhaps a good dose of chemo would cure this elephant?

      The difference between a doctor, and a quack, is that I would ask a vet to treat the elephant, a quack would act like he knew everything necessary to treat our poor sick elephant.

  3. Roy Schwartz Says:

    You can read more about Hodgkin’s and why treating Daniel is so important here:
    http://bit.ly/PtgV3

  4. Denice Walter Says:

    I’m starting to look at *all* woo as basically *advertisement*(for products, services, books,films, etc.)masquerading as health “information”: *before* they can begin the sales pitch, the sellers need to convince potential buyers of their inalienable right to “health freedom”(or is that “freedom from health”?)If you look at the websites of any of the major woo-providers( and you know who they are)health freedom comes up again and again.Words like “tyranny” and “oppression” jump out at you.Anti-vaccinationists use words like “forced” a lot. I think this might be fueling some of the vehement reactions we’ve been witnessing.

  5. Mike Says:

    I don’t defend “alternative” medicine-I suspect, though I’m not qualified to have an opinion on the matter, that it is a bunch of hokum. However, in these cases there seems to be a drastic lack of perspective-all sorts of kids die all over the world(some from bombs dropped in the name of “helping” a country..)from all sorts of things, and beg for health care. Yet, here, extensive resources, and violence, are employed to compel the submission(and some headlines for politicians)of a scant few who don’t want help. It seems like a bizarre cross between a slasher flick and a Walt Disney movie, where somehow a happy ending can be made if enough force is applied. It can’t, this is the real world. And it cannot be perfected.

    A scientific fact-everyone dies. If you really want to justify that moral superiority you seem to like to present, mail a bottle of antibiotics to Africa(or send Daniel’s chemo drugs)kids die there in droves from the lack of basic drugs. Or volunteer at a Hospice.

    Or take up knitting.

    Just, please, stop “saving” people from themselves-plenty of people are asking for help. Triage.

    Just me of course, and I’m a noted degenerate. I do like your blog though-my first visit.

    Mike

  6. catgirl Says:

    It saddens me when people essentially say, “just let the kid die.” Just because other children are dying does not meant we shouldn’t care about this boy. Hauser’s treatment is not causing the deaths of other people. If he didn’t use the chemo drugs, then it’s not like they would be sent to needy children in Africa anyway. I’m all for sending life-saving drugs to needy children outside of our country, but that is completely unrelated to this specific case. This boy has been lied to about his disease. He thinks that he has a 100% survival rate with herbs. By the time he realizes he is wrong about this on his own, it might be too late to save him. This child does not deserve to die just because people lied to him. He wants to survive, and he just doesn’t understand the reality of the situation. It’s tempting to be angry at these people, but we have to get past that anger when a child could die from lies. I still think we should prosecute whoever told this family that herbs are 100% effective at curing cancer. If they bought the herbs from the person who told them that, that is false advertising at minimum.


  7. Does this mean that all drug medication is worthless? Of course not. However there has been for years a concerted effort by pharma companies to control the market so to speak and limit the availability of other viable treatments that threaten their profits, especially when it comes to cancer. It does not take a rocket scientist to understand why chemo is considered the most effective treatment when in fact the information, testing, and peer reviews are funded by the manufacturers of the chemo drugs.

    Let me be blunt. This comment quickly refutes Whitecoattales’ fear that you are intelligent. You aren’t. It is a logical fallacy to accuse Big Pharma of being only interested in profits, then on the other hand accusing Big Pharma of suppressing “cures” that might be highly profitable. Big Pharma, which relies on the scientific method to gain regulatory approval for it’s products, will make much more money on miracle “cures”. Moreover, Big Supplement, which does not require anything to release products for sale, makes more money than Big Pharma. Please, if you’re going to make a straw man argument, or appeal to a conspiracy, at least try to be rational.

    There are MANY effective treatments for cancer that will never be fully evaluated publicly simply because it would cause these companies to lose too much money. The natural alternative that removed an aggressive cancer from my body (and still leaves my oncologist speechless) is even listed on the FDA’s list of “Fake Cancer Cures” (although the government itself admits that this treatment does indeed fight against cancer).

    To be blunt, I don’t believe you. I don’t know if you had a cancer. I don’t know what type. I don’t even know if you were “cured”. And, since you are seeing an oncologist, I have no clue what he did prior to your lotions and potions of no medical value were employed. Your natural “cures” are probably a perfect example of post hoc ergo propter hoc, a logical fallacy whereby you think something happened because of a prior event. Science, which is nothing more than a logical and philosophical system to rationally uncover the the foundation of the natural world, utilizes better logic than you’ll eve know.

    Jane, I have no respect for your ideas, and I think you are a liar. So there we go.


    • Slight clarification,”jane is right”is not jane
      I never thought “jane is right” was smart
      I do think she believes this, I think she’s willfully ignorant rather than lying
      Otherwise, spot on criticisms


      • Too many Janes!

        And we might be splitting some very fine hairs to find a difference between “willfully ignorant” and “liar.” However, since I’ve stated that being civil to these woo-meisters and their zombie minions is probably better for convincing those who are investigating these ideas from a purely neutral basis. Therefore, I’ll go with “Jane, you willfully ignorant….”

        I was channeling Chevy Chase from circa 1978 Saturday Night Live. I’m guess you weren’t born then. 🙂

  8. Jeffry Says:

    I guess Billy Best was crazy as well….

    http://www.abcnews.go.com/US/story?id=7661834&page=1

    Oh well.


    • Ah yes, Billy Best, the man who had 2 cycles of chemo, then ran away, and claims to have survived “without chemo”

      Turns out, in a high percentage of cases, 2 cycles of chemo is curative, we continue further because more cycles of chemo increases the cure rate. We can’t tell ahead of time, which patients will be cured with fewer cycles.

      Had Billy Best had NO chemo and survived, I’d be impressed.

      Oh Well.


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