Daniel Hauser and Informed Consent

I’ve been avoiding commenting on the Daniel Hauser Saga. Partially because I haven’t had time and I’ve been trying to crank out some more posts about my experiences on OB, Jadedness, and Hard Conversations. Partially because I feel it’s been well covered elsewhere.

There’s one quick, teachable moment here though, that I feel hasn’t been talked about enough.

Daniel Hauser could not have “revoked his consent”, it’s not about Daniel Hauser “making his own decision”. It’s really about informed consent. Even if you ignore age, Daniel Hauser couldn’t have given, or revoked, informed consent.

To say that you have informed consent mean that you understand the consequences of your actions.

To have given informed consent, a patient should know the following:

  1. The patient’s diagnosis.
  2. The purpose of the proposed treatment.
  3. The risks and benefits of the proposed treatment.
  4. The alternatives to this treatment, and the consequences of the alternatives.
  5. The risks of NOT having the proposed treatment.

 

  1. Hauser probably knows the diagnosis is Hodgkin’s lymphoma. Check.
  2. He probably knows the purpose of chemo is to cure the lymphoma. Check.
  3. He clearly does NOT understand the risks and benefits of the treatment. Clearly he understands that chemotherapy makes you feel sick. He doesn’t seems to understand the benefit – a very high cure rate.  Fail.
  4. He clearly does NOT understand the risks and benefits of his alternative therapy – his mother explicitly said the survival rate with her “alternative therapy” is 100%, so Daniel Hauser almost certainly doesn’t understand. He certainly doesn’t understand that the biggest risk of his alternative therapy is death, by lymphoma. Fail.
  5. There is no way that he understands that he will very, very likely die without chemotherapy.  Fail.

If you accept Daniel is “old enough” to understand the issues in theory, which I don’t, he still doesn’t understand the situation will enough to have given or revoked informed consent for chemotherapy.

Any argument that includes with “medical choice”, “his right to be left alone”, “his right to refuse treatment”, “His family’s right to choose medical care” or “religious exemption” completely miss the point.

“His right to be left alone” and, “His right to refuse treatment”, require understanding of the treatments. The same goes for “medical choice”, which would have been a dubious argument to begin with.

“His family’s right to choose his medical care”, and “Religious Exemption”only apply if their choice does not constitute neglect. The court has already ruled that not accepting conventional treatment for a disease with a 90% cure rate is neglect. Please note, this is not particularly controversial. In fact we’ve talked about this before on this blog, in comments: If a Christian Scientist family walks in with their infant who has pneumonia, they don’t get to refuse antibiotics. It may be against their religion, but they don’t get to sacrifice their infant for their religion.  

As is often the case, thanks to Orac for framing the issue. Also thanks to Lee for making statements so persistently idiotic that I felt the need to respond.

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16 Comments on “Daniel Hauser and Informed Consent”

  1. luna1580 Says:

    i would argue that daniel hauser fails “check 2″ of your list as well.

    there seems to be a strong possibility that he’s been lead to believe that chemo is not in fact a treatment for his cancer, rather that it is an ungodly poison only recommended to pump money into the pockets of big pharma by a conspiracy of evil money-grubbing doctors. the woo in this case (the nemenhah ties) certainly describes chemo in this way. and as daniel cannot read and only knows what his mother and her nemenhah friends tell him about the world, he may believe this too.

    after all, he believed them that he was now “an elder and medicine man” even though he couldn’t explain to the judge what those terms actually meant….


    • I think it’s a point on which reasonable people can disagree.

      I was choosing the broadest possible interpretation to give Hauser every benefit of the doubt. Even doing that, he doesn’t fare very well.

      The tragedy is that this young man could live a normal life!
      I see so many patients every day who, through no fault of their own, are doomed to suffer with conditions that WILL kill them.

      He has a serious condition that we do a very GOOD job of curing. I understand that chemo is difficult, but his refusal will most likely lead him to much more suffering.

      • Jeffry Says:

        Dang, you used the ‘c’ word.

        It is unfortunate when the State has to get involved because now the situation is going horribly wrong.

        I do have a problem with the State getting involved with the ‘proper’ treatment because the State can’t even manage its own money. I certainly don’t expect them to manage healthcare any better. This is setting a dangerous precident on no uncertain terms.

        So let me get this straight, he’s going to be forcibly put into foster care, forcibly given drugs? Then what?

        When is this over?


        • While your ban remains in place, I felt it necessary to address this comment specifically.

          Realise that it’s not the State getting involved with “proper” treatment. It’s the State getting involved in child neglect.
          It’s not SETTING a precedent. As I mentioned in the post, it’s FOLLOWING precedent that has already been set.

          The religous exemption to refusing care does not extend to child neglect. We’ve addressed this here before on this blog and it’s just basic medical ethics. You can’t sacrifice your son for your religion.

          The right to decide what care you receive at all is determined by your ability to consent. If Daniel was an adult, who demonstrated understanding by informed consent as detailed above, he could refuse. Because he is not, and he clearly does not understand, he cannot refuse.

          The question isn’t “proper” treatment. If he was opting for a known cancer therapy regimen that works, but is not as effective, that would be ok.

          If he had a different kind of cancer, where surgey was an option, but known to be less effective, or have a higher recurrence rate he could have surgery instead of chemo.

          He is however, opting for a barely legal, known to be ineffective treatment. It is NOT a treatment that is specific to his “religion”. It’s a treatment his mother discovered on the internet.

          Please note that commenting that the state can’t manage it’s money has nothing to do with health care. The state isn’t making medical decisions, the state is following the recommendations of doctors and advocates.

          To summarize:
          Not setting a precedent at all.
          Not dangerous at all.
          Informed consent is the issue.

          Don’t just spout libertarian talking points. Even the libertarian doctors I know say this kid should be getting chemo. It’s not about ideology, it’s about understanding.

  2. RMM Barrie Says:

    I do not see 1 or 2 as being a check. Read pages 26 to at least 31.
    http://www.courts.state.mn.us/Documents/0/Public/Other/Hauser/Hauser_Transcript.pdf

    He seems to know cancer and chemo only in the abstract and there is no mention of Hodgkin’s.


    • Admittedly, his court testimony is underwhelming.

      I’m willing to call 1 and 2 questionable rather than slam dunk checks here based on the court testimony. But the truth is that 1 and 2 are supposed to be the easy parts -“I have cancer” and “chemo is supposed to cure it” (even if they disagree), generally thats as far as I’d go before I call those ones good.

      Arguably, they aren’t true here, but again, I was giving as much benefit of the doubt to Hauser as possible.

      The point that even the people strongly opposed to my point of view here can’t disagree with is that Hauser doesn’t understand the risks and benefits, the alternatives, and the consequences of not getting the treatment.

      Incidentally, tough crowd tonight!

      Two quick comments, and both object that I’m not tough enough on the denialists.
      Generally by now I have trolls telling me that I’m a pharma shill – they’re easy to disprove.

      • luna1580 Says:

        Two quick comments, and both object that I’m not tough enough on the denialists.

        well, maybe thank your link at orac’s for that :)

        but really, this case is so, so tragic. it is tragic when anyone dies young, for any reason, but daniel seems to be on a path to early death that is wrong on many levels.

        i’m very curious about if he really has a serious learning disorder/physical brain developmental problem that has prevented him learning to read. if he does, it is yet another reason he may not be capable of understanding all this.

        even if he has totally medical normal thinking and memory and all other mental capacities for a 13 year old male, it seems undeniable that his knowledge of medicine and the world in general is very limited and filtered through his mother colleen -the same mother who believes that x-rays revealing the mass in his chest are somehow “wrong.”

        so we’re talking about people who are mentally incapable of understanding modern medicine, or have some sort of emotional block which prevents them from understanding it objectively and logically (the death of colleen hauser’s sister after horribly not-tolerated chemo perhaps?).

        people of a libertarian bent who are blindly arguing that daniel’s “right to live or die as he chooses” is being trampled are obviously suffering from a similar problem: they are either mentally incapable of understanding the relevant circumstances of this individual case, or they have a vested emotional interest in a larger abstract ideal which prevents them from understanding it objectively. no shock that they identify with colleen hauser…

  3. leigh Says:

    the kid has no idea of the consequences of the situation, nor does he understand anything beyond the short-term negatives of the treatment. kids do not possess the reasoning abilities to measure long-term benefit (staying alive) against short-term loss (feeling bad from the treatment).

    this is why parents are legal guardians and are charged with making good decisions for their children. because the children are essentially unable to discern beyond the immediate situation. this whole situation is very, very sad…

  4. Tsu Dho Nimh Says:

    I will fault the doctor (Bostrom) for not having a one-on-one chat with the boy to make sure the he was getting the correct information and to find out what his thoughts on the experience was. Reading the transcript, Bostrom was either talking to the mom only, and she filtered the info through her own experiences, or sending his nurse to explain things.

    However, the transcript also makes it VERY clear that Daniel had no desire to be a medicine man – his mom just told him he was one, after the first round of chemo – and he has no clue what Nemenhah is about, doesn’t know what an “elder” is although he is supposed to be one, has no idea what his non-chemo meds are or what they are supposed to be doing for him.

    For a 13-year old farm kid, he’s not well informed about what’s going on at the farm either.

  5. catgirl Says:

    I think some of the responsibility falls on whoever convinced this family that herbal treatments are 100% effective. At minimum, that’s false advertising (assuming the family paid for the herbs).

    When Danial had the chest x-ray and showed that the tumor had grown, I hoped that something like that would make the mother realize that the herbal treatments aren’t working. The mother’s fear is understandable, but I think she should be supportive of her son during treatment, rather than making it even harder on him.

  6. Jeffry Says:

    To summarize:
    Not setting a precedent at all.
    Not dangerous at all.
    Informed consent is the issue.

    Don’t just spout libertarian talking points. Even the libertarian doctors I know say this kid should be getting chemo. It’s not about ideology, it’s about understanding.

    Sir, you can appear to bring out the iron fist wrapped in a velvet glove, but you are missing the mark.

    This whole situation has nothing to do with religion, period. This situation has EVERYTHING to do with free choice and that includes medical care. The State is superceding the parent’s decision.

    Because you are in the medical field you believe chemo is the correct choice. Again, I called the American Cancer Society and even THEY say people have treated cancer successfully with nutrition and herbs. [Edit: I called the ACS personally, their response is posted in my reply below, this is an inaccurate, and deceptive falsehood - WcT] By your definition you stated earlier, this is ‘ok’. What isn’t ok is that this protocol is not acceptable the the mainstream medical establishment

    Please note that commenting that the state can’t manage it’s money has nothing to do with health care. The state isn’t making medical decisions, the state is following the recommendations of doctors and advocates.

    Do these advocates speak for me? Do they speak for you? What if they made a decision you disagreed with and you had to be forced to take a treatment you didn’t agree with.

    If your son had cancer and you believed that chemo was right for your son… and these ‘advocates’ stated that taking herbs is more effective, and then they would place him in foster care and give him the herbs, what would you do?

    The mere idea forcing someone to adhere to a medical protocol through authority is frightening. Just as long as the decision is going in one’s favor does NOT make it fair, just, or righteous.

    Sir, in all due respect, we do not live in Communist Russia. We do not live in Communist China. This is the United States and we still have a choice, even regarding health care.

    He is however, opting for a barely legal, known to be ineffective treatment. It is NOT a treatment that is specific to his “religion”. It’s a treatment his mother discovered on the internet.

    I was unaware of a legal, barely legal, or illegal statuses in treatment. Is it legal or not? If yes why can’t that be an option?

    Because her mother ‘discovered’ it on the internet is irrelevant. She could have also discovered Chemo-therapy on the Internet as well. Unless that is the crux of the matter here… she by-passed the advice of the medical establishment? Or is the crux of the matter everything on the internet is bad and cannot be trusted? If that’s the case I’ll stop using WebMD.

    annnnnnnnnnnnnd Back to Oprah.


    • Again, I called the American Cancer Society and even THEY say people have treated cancer successfully with nutrition and herbs.

      You sir are a liar, or someone lied to you. I just called the American Cancer Society (1-800-ACS-2345, or http://www.cancer.org, and read the cancer information person your comment.
      Her response “No, that’s absolutely not something we would say. We do not advocate for any particular treatment regimen. We specifically give people information about standard treatment regimens. As far as complementary and alternative medicine is concerned we really only go as far as telling people what therapies are safe, we do not say that they can be used for treatment without standard therapy. ”

      I thought you might have made a good faith error, or asked If anyone had ever cured cancer in that manner, and she said “we would never discuss anecdotal evidence.”

      Therefore this:

      By your definition you stated earlier, this is ‘ok’

      is incorrect.
      To comply with my HONcode status, without censoring you, I am adding a strikethrough edit to your comment, and an edit indicating that your comment is both false, and deceptive.

      Realise that cancer isn’t ONE disease. We are not talking about “cancer”, we are talking about Hodgkin’s Lymphoma.

      I have not seen a single case report of someone having Hodgkin’s Lymphoma being successfully treated with herbs.

      Do these advocates speak for me? Do they speak for you? What if they made a decision you disagreed with and you had to be forced to take a treatment you didn’t agree with.

      The advocates say that Daniel Hauser doesn’t understand what he’s talking about. He is a minor, and unable to make this decision for himself legally, even if he was, he clearly doesn’t understand what he needs to understand to be able to make that decision. That’s what the advocates say. When you are a child in court, generally the court appoints a lawyer or law student to represent specifically your interests, especially where they may conflict with your legal guardian’s interests. Of course, you assumed by advocates, I mean a medical advocate.

      If your son had cancer and you believed that chemo was right for your son… and these ‘advocates’ stated that taking herbs is more effective, and then they would place him in foster care and give him the herbs, what would you do?

      Given my explanation of advocates above, this is an incoherant situation. You are acting as if Herbs are an equivalent treatment to Chemotherapy. That my friend, is a bat-shit insane position to be argueing from. Not even the people defending Hauser’s decision are saying that.

      Sir, in all due respect, we do not live in Communist Russia. We do not live in Communist China. This is the United States and we still have a choice, even regarding health care.

      Even the Russians don’t live in communist Russia, they live in something closer to a facist Russia. Those in communist china have exactly the kind of “freedom” of medical choice that you are advocating for us here. A great many more people die unecessarily in that country. It’s not because they’re “choosing” to die, it’s because they don’t know what treatments actually work. And they don’t have access to that information the way we do.

      I was unaware of a legal, barely legal, or illegal statuses in treatment. Is it legal or not? If yes why can’t that be an option?

      It’s not Illegal to use chicken soup “for” cancer.
      On the other hand, it is illegal to say that you are treating your child’s cancer with chicken soup, and only chicken soup.
      So it can’t be an option, because saying “I will only treat my child’s cancer with chicken soup” is child neglect.

      It can’t be an option becuase it’s not a treatment option. Jumping rope isn’t an option either. it’s not illegal, it’s just not a treatment for cancer, even if some conman says so, and then tries to sell you a 500 dollar rope.

      Or is the crux of the matter everything on the internet is bad and cannot be trusted? If that’s the case I’ll stop using WebMD.

      So let’s NOT take my quotes out of context next time.
      I said

      He is however, opting for a barely legal, known to be ineffective treatment. It is NOT a treatment that is specific to his “religion”. It’s a treatment his mother discovered on the internet.

      In context, it’s clear that the crux of the matter is that this is NOT a religious treatment. It therefore does not qualify for a religious exemption, such as not receiving blood if one is a Jehovah’s Witness.

      But additionally, have you NEVER read my blog? Absolutely, my position is that all medical information you read on the internet, not explicitly in a published, peer reviewed journal, or on a government medical website (IE the CDC, or the national cancer guidelines) is not trustworthy.

      Thats why every single post I have here about medical information explicitly says “Go talk to YOUR doctor, in person, don’t go off of what I write here”, or points to my disclaimer, where I say exactly that.

      So yea, don’t use WebMD, it’s pretty consistently useless.

      In summary:

      -Jeffry lied, or was lied too about Herbs and nutrition as a cancer treatment.

      -Advocates is in reference to lawyers or law students who represent specifically the interests of the child.

      -We’re not in communist anywhere. Communism has nothing to do with this. This is one of the most incoherant, fear mongering arguments ever put forth on this blog.

      -And I’ve read some really incoherant arguments on this blog.

      – Herb’s aren’t an option for the same reason Jumprope isn’t an option. Herbs aren’t a treatment for cancer. They are a treatment for having a wallet too full of cash.

      – Don’t trust medical information you find on the internet. Go see a doctor. Make sure she/he is a real doctor. With an MD, or DO. If they say they have an ND, doctor chiropractry, doctor of accupuncture, or homeopathy, go somewhere else.

      -Don’t watch Oprah.

      • jane doe Says:

        I have been following this case of Daniel hauser with interest. I have been using natural remedies and nutrition for decades. I raised 5 healthy children withour immunizations, and had to fight for that right. I am a midwife and have had to support the rights of women to make thier own choices as to where and how to give birth to thier babies…I am a very educated individual in traditional and non-traditional medical interventions. i have worked with hospice and have watched people die in pain and agony both with medical interventiona and by using ‘natural ‘ medicine. i have attended native American healing ceremonies and have seen people who the doctors gave up on walk out with no sign or illness in their bodies and I have seen natural cures no work.
        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.
        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. If I were in the situation as this mother I would consider taking off as well, and give myself some time to think of what alternatives I wouold have in the care of my child. Given the opportunity without threats I would perhaps use both medical and so called alternative ( I prefer holistic healing).
        I did not use my real name as i have learned to didtrust the medical folks and if you disagree with them you are liable to lose your rights and freedom, just like this family in question

        • ddw11 Says:

          No one’s right to make decisions about their health care is being taken away. Did you read the original post? Informed consent is the very bedrock upon which medical ethics in this country is built. The point is that Daniel is not competent to make his own medical decisions. He does not understand his illness, he does not understand why chemotherapy is necessary, and he does not understand the consequences if he does not undergo treatment.

          I don’t know why his parents stopped chemotherapy. However, the reason doesn’t matter in the least. The medical facts are this: Daniel has a 85-95% chance of cure with chemotherapy and without it he will die. Failure to provide their son with rational treatment is negligence.

          I emphasize rational treatment. It doesn’t even have to be the most effective treatment. The family could have spaced the chemo treatments out more than the doctors would prefer or they could have shortened the course. They were free to have altered the treatment in any number of ways to make it more palatable, if less than ideal. They could have added any number of herbs, acupuncture treatments, homeopathic remedies, or prayer sessions to his chemo regimen, so long as he was receiving a science based, rational treatment.

          The courts in this country are exceptionally lenient in allowing patients and parents of patients to choose all sorts of quackery. However, they did the one thing which a parent can not do: withhold lifesaving treatment from their child. It’s really that simple. They were, and you are, free to do damn near anything except watch your child die of treatable disease.


  7. [...] “Freedom” without understanding is really living in bondage to your ignorance. Daniel Hauser and Informed Consent [...]

  8. Leittia Says:

    I believe that a minor should have the right to refuse and revoke an informed consent. I can say this because I, myself was a Daniel Hauser. Although it may be beneficial, a child is still a person and should be entitled to the same rights in this instance as any adult. Chemo therapy is very aggressive and painful. You lose so much of yourself while on chemo. I can definitely understand why anyone would say no to this form of therapy! I was 15 when I was diagnosed with Rhabdomysarcoma. i was well aware of my diagnosis as well as my prognosis. After a year of chemo, I begged my parents to stop. My fate was grim, and I was told I probably wouldn’t make it to see my senior year in high school. However, my parents told me and doctors that they were going to give their child every possible chance they could possibly give. That was to say that they’d rather me die on chemo (what they considered as them fighting for my life) than to die with dignity with my hair, weight, and contentment. I defied all odds. I am and adult with two children. However, I stll submise that had I had a choice i would have thrown in the towel and gone to heaven my way. I pray that I am never faced with this situation with my own children, but if I am I know that my children and their thoughts and concerns will be foremost my first concern and not my own fears of loss and their demise.


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