May 18 2009

Medical Neglect

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Comments: 18

Daniel Hauser is a 13 year old boy suffering from a form of blood cancer called Hodgkins lymphoma. His oncologist is recommending a standard course of chemotherapy. I do not know the clinical details of this case, but overall, with current treatments, the 5 year survival for childhood Hodgkins lymphoma is 78%.  Without treatment, Daniel’s chance of survival drops to 5%.

Despite this Daniel is refusing chemotherapy, and his family is supporting his decision. If Daniel were an adult that would be the end of the story – competent adults have the right to refuse any intervention for whatever reason they choose. But Daniel is a minor, so the state has a duty to protect him, even from his own parents and himself.

Daniel’s family are members of the Nemenhah religion, a Native American religious tradition that preaches that the journey from sick to healthy is a spiritual journey. They only use “natural” remedies and refuse modern medical intervention.  Dan Zwakman, a member of the Nemenhah religious group, is arguing that this is a case of religious freedom, saying that “our religion is our medicine.”

While the beliefs of the Nemenhah religion are in the style of Native American beliefs, the bottom line is the same as Christian Scientists or any other religion that preaches that sickness and health are a spiritual matter that should be treated spiritually, and reliance on modern medicine demonstrates a lack of faith.

The issues here are therefore well-trodden territory. Our society respects the religious freedom of adults, even if their faith leads them to refuse life-saving medical interventions. But parents are not generally allowed to refuse standard medical care for their children, regardless of the reason. This is considered criminal neglect.  In some states in the US, however, believers have managed to get laws passed which shield them from prosecution for neglect if they refuse standard medical care on behalf of their children.

My position on this is probably similar to the majority opinion – children are not yet mature enough to make life and death decisions for themselves, and parents do not have the right to condemn their own children to death or morbidity in order to serve their own religious beliefs. The state has a right and a duty to protect and care for children until they become an adult. I reject the arguments of those who claim that their freedom to practice their religion trumps the responsibility to provide basic care for children.

But this is a debate that will likely be fought over and over again.

CAM As Religion

While investigating this case I also found it interesting that there is a significant overlap between many of the claims of the Nemenhah religion and new age alternative medicine claims. Both groups (CAM advocates and advocates of religions whose faiths conflict with modern medicine) preach “health care freedom”. Of course in this context “health care freedom” serves the exact same role as  “academic freedom” to creationists – as an argument to subvert reasonable and necessary standards.

It also seems that while there are those who are sincere in their Nemenhah beliefs, others have exploited the religion simply to sell supplements or practice medicine under the cover of religion, using the “Native American” angle as a selling point. “Payments” are explicitly referred to as “donations” or “offerings” with disclaimers that the exchange of money for healing is not a commercial transaction.

The lines between religion and so-called “alternative medicine” are indeed very blurred, and increasingly so. What concerns me the most is that religious freedom is being used as a get-out-of-jail free card to avoid regulations designed to protect consumers from fraud or incompetence. Anyone now can practice medicine and sell medical products and services if they are couched in religious or even just spiritual jargon.

Regulatory agencies are caught in a bind – they are easily sapped of their confidence and enthusiasm for pursuing a case when the religion card is played. I have personally seen this myself – once regulators get a whiff of religious issues in a case they immediately back off and become reluctant to get involved. Some CAM proponents have therefore exploited this as a mechanism to shield themselves from scrutiny and regulation.

This is a conversation the public needs to have, and regulations need to catch up with reality. A reasonable balance between religious freedom and preventing exploitation and fraud needs to be accommodated.

In my opinion the case of Daniel is similar to the recent case of the 9 month-old Australian girl, Gloria Thomas, who died from untreated eczema – a severe skin condition that left her skin thin and cracked allowing her to become infected. Her father, Thomas Sam, decided to treat her exclusively with homeopathy and consulted other homeopaths and naturopaths for treatment. His faith in homeopathy lead him to watch his young daughter slowly die rather than seek conventional care.

Decision on Daniel

There is good news for Daniel Hauser, however. Recently a judge determined that his parents were guilty of medical neglect. While Daniel will not be removed form their custody, they have until May 19 to find him an oncologist and go through with standard treatment for his cancer.

The judge ruled:

“(Daniel has a) rudimentary understanding at best of the risks and benefits of chemotherapy. … he does not believe he is ill currently. The fact is that he is very ill currently.”

This affirms what I was saying above – children likely do not have a sufficient understanding of life and death medical decisions to shoulder the burden of such decisions themselves. In similar cases judges will typically make an individual decision for teenagers, rather then ruling solely based upon their age. In this case, it seems, Daniel does not understand or acknowledge his medical condition.

Daniel’s court-appointed attorney, Philip Elbert is quoted as saying:

“I feel it’s a blow to families.  It marginalizes the decisions that parents face every day in regard to their children’s medical care. It really affirms the role that big government is better at making our decisions for us.”

I know lawyers are advocates, but this is complete nonsense – the ruling does no such thing. Elbert is treating this decision in this specific case as if it is legislation making all children wards of the state for medical decisions. Rather, this and other cases amount to only the most extreme cases of medical neglect forcing the state to reluctantly step in to protect the health of the child.

Daniel’s mother, Colleen Hauser, is also quoted as saying: “My son is not in any medical danger at this point.” Given that Daniel has a potentially fatal cancer that was reduced after initial chemotherapy, but then has grown after Daniel refused further treatment, this statement is delusional. That, in my opinion, warrants the state stepping in.

In practice parents are given significant leeway in making medical decisions for their children and only the most extreme cases are brought before the courts, and even then the parents are given primary consideration.

Apparently Daniel himself is a medicine man and elder in the Nemenhah band, the primary belief of which is to treat illness with natural remedies. This is an almost complete mixture of religion and new-age alternative medicine philosophies. This is no different than treating severe eczema with homeopathy, except the “philosophy-based” medical beliefs are cloaked in religion.

I hope that Daniel lives long enough to reevaluate his decision from a more mature perspective.

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18 responses so far

18 Responses to “Medical Neglect”

  1. beckiwithanion 18 May 2009 at 8:58 am

    This reminds me of one of Dawkins’ favorite pet topics: Indoctrination as child abuse. He argues, convincingly, that parents giving their religion to their children (rather than teaching them critical thinking skills and letting the children decide for themselves once old/mature enough) is cruel.

    Of course, if the parents were accustomed to exercising their own critical thinking skills, they probably wouldn’t put the kid in this position in the first place…

  2. pendens proditoron 18 May 2009 at 1:23 pm

    The Native American angle brings up some questions I hadn’t really considered before.

    Could (or does) the Brazilian government punish members of indigenous rainforest tribes for breaking Brazilian law? For some of the more secluded tribes, it would be like aliens landing on Earth next week and punishing human beings for breaking the laws of the intergalactic society whose jurisdiction our solar system just happened to fall within. Though there wouldn’t be much we could do about it, we’d be quite right to protest.

    Of course Native Americans are far more integrated into our society than that. And I don’t disagree with Steven or with the judge’s ruling. This kid certainly doesn’t look full-blooded and I doubt he lives on a reservation. They’re probably just New Agers who “converted” to a Native American worldview, or at least a bastardized version of it.

    But what if he did live on a reservation and he was 100% authentic? Would this ruling still fly? Would we be justified in forcing treatment?

    I can’t think of any reason why the answer would be no. But still, there’s just something about the idea that doesn’t sit right with me, and I can’t quite put my finger on what it is.

    I guess there’s a point at which you can no longer escape the world that surrounds you. Fair or not, assimilation is inevitable.

  3. [...] Medical Neglect [...]

  4. amittaion 18 May 2009 at 1:38 pm

    pendens proditor said: “But what if he did live on a reservation and he was 100% authentic? Would this ruling still fly? Would we be justified in forcing treatment?”

    Well, reservations are a tricky issue. Each one, as far as I know, has different issues of jurisdiction. For example, the Cherokee Nation has its own constitution and is considered to be sovereign by the federal government. But what exactly does that mean? I have to plead ignorance here. The subject fascinates me but I don’t have sufficient resources or time to delve into it. Hopefully someone can help us out on that.

  5. Oracon 18 May 2009 at 1:45 pm

    Actually, the reference you cited shows that the 78% figure you quote is actually the ten year survival for a patient who has suffered an early (3-12 months) relapse:

    The presence of B symptoms and extranodal disease at the time of relapse are adverse prognostic features.[1] In one study from the Society for Paediatric Oncology and Haematology (GPOH), patients with an early relapse (defined as occurring between 3–12 months from the end of therapy) had a 10-year event-free survival (EFS) of 55% and a 5-year overall survival (OS) of 78%. Patients with a late relapse (defined as occurring more than 12 months from the end of therapy) had a 10-year EFS and OS of 86% and 90%, respectively.[2]

    In other words, even after an early relapse after a complete initial course of treatments, a child with Hodgkin’s disease still has a 78% chance of living 5 years and a 55% chance of living 10. That’s the salvage rate after treatment failure.

    In any case the 78% figure is not applicable to Daniel’s case (yet, and I hope it never will be–because it would only apply if he were to relapse after treatment). Daniel has stage 2B Hodgkin’s disease, for which an 85-90% long term survival can be expected, which is what the oncologists have been citing in news reports of Daniel’s court case.

    Of course, given the delay in therapy, it is always possible that Daniel’s cancer has progressed and that he is no longer stage 2B. Even if that is the case, his chances should still be better than 78%.

    Finally, in this case, I think that religion is merely a convenient excuse to do what Daniel and his mother wanted to do anyway. Remember, Daniel accepted one course of chemotherapy. It made him sick and scared him. Also, his mother and he were very disturbed by the death of his aunt when he was five. She died while undergoing chemotherapy. Personally, I think Daniel and his mother both freaked out at how sick the first round of chemotherapy made him and latched on to the most convenient (and powerful, legally speaking) excuse they could come up with to justify his decision to stop chemotherapy: Religion. At the risk of too much self-promotion, I wrote about this in more detail here:

    http://scienceblogs.com/insolence/2009/05/daniel_hauser_and_the_rejection_of_chemo.php

  6. Steven Novellaon 18 May 2009 at 1:50 pm

    Orac – thanks for the clarification. So his chances of surviving are even better with treatment than I cited.

  7. Calli Arcaleon 18 May 2009 at 4:07 pm

    Of course Native Americans are far more integrated into our society than that. And I don’t disagree with Steven or with the judge’s ruling. This kid certainly doesn’t look full-blooded and I doubt he lives on a reservation. They’re probably just New Agers who “converted” to a Native American worldview, or at least a bastardized version of it.

    But what if he did live on a reservation and he was 100% authentic? Would this ruling still fly? Would we be justified in forcing treatment?

    No, he’s not full-blooded, and he doesn’t live on a reservation. He isn’t Native at all — and neither is “Cloudpiler”, the scam artist who created the Nemenhah “religion” as a way of hawking his herbal remedies without too much scrutiny. (You have to belong to the group to buy the remedies. Membership is obtained by paying your annual dues, per person, not household.) Real Native American groups are incensed at things like this, which aren’t even a bastardized version of any native practices but are instead something some guy cooked up on his own and then slapped the Indian-sounding name on it for marketing purposes.

    Would the ruling fly if he was living on a reservation? Hard to say. The reservations are sovereign territories, and there are jurisdictional issues. In Minnesota, though, the tribal authorities would most likely cooperate on a case like this, if nothing else than because they’d be outraged at this latest theft of their identity for some white man’s enrichment.

  8. Oracon 18 May 2009 at 4:10 pm

    By the way, if you want to see some serious crazy, complete with likening chemotherapy and the state to Nazi Germany, check out Mike Adams, the only man who can bring home the crazy this way:

    http://www.youtube.com/watch?v=pFNMM1bDDK8 (Part 1)

    http://www.youtube.com/watch?v=F84weZ6-Qu8 (Part 2)

  9. Oracon 18 May 2009 at 4:31 pm

    Orac – thanks for the clarification. So his chances of surviving are even better with treatment than I cited.

    I forgot to mention that that is true, unless his tumor has progressed significantly, to the point where a bone marrow transplant might be needed to salvage his life. If that is the case, his odds can drop more than I mentioned.

  10. HHCon 18 May 2009 at 10:00 pm

    I had a mentor, an licensed an accredited social worker who taught me about a real case in Iowa of medical neglect. A doctor and his wife allowed a female child to die of diabetes because of their faith. He tried his best to talk medical sense into the family. It didn’t work. No legal charges were made against the family. When I asked why, he stated that a family that watches a child die due to their decisions was punishment enough. Scarey stuff!
    :-(

  11. Calli Arcaleon 19 May 2009 at 3:43 pm

    I also posted this as a reply to Orac’s excellent coverage of the story. There is a new development in the case. The Hauser’s were due to appear in court today, I believe pertaining to the x-ray the boy was supposed to get. Not only did he not get the x-ray, but he and his mother did not show up in court. His father finally spoke out, saying that he hasn’t seen either of them since yesterday, when his wife told him that she was leaving ,and that was all he needed to know. (Plausible deniability? Or did she think he’d spill the beans? Depends; having heard nothing from the father up until now, it’s impossible to judge his investment in his son’s treatment.)

    Minnesota boy resisting chemo misses court hearing

  12. TsuDhoNimhon 19 May 2009 at 10:21 pm

    Daniel’s family are members of the Nemenhah religion, a Native American religious tradition

    The Nemenhah are NOT following any known Native American religious tradition! It’s a 100% plastic New-Age woo developed by a white guy named Phillip Landis (a.k.a. “Cloudpiler”, or as he’s known in Native American Circles, “Piles Bullshit Deeply”).

    He’s using a federal law that’s designed to protect Native AMerican rituals as a cloak for his supplement businerss, selling membership in his “band” to members of his MLM.

    They were using the name of a known Nez Perce band until the Nez Perce did the “summoning of the land sharks” ritual and made him stop.

  13. HHCon 20 May 2009 at 12:06 am

    This Minnesota farm family will learn soon enough you can’t run and hide from the court. There is a long arm to the law. The youth will become a ward of the state. He’ll undergo psychiatric evaluation. And the rest will be legal history. Contempt of court can never be an answer to medical problems.

  14. badrescheron 20 May 2009 at 3:39 am

    Let us not forget some of the other facts that led to the judge’s decision:

    - Daniel is considered an elder, but does not know what the word “elder” means.
    - The ONLY Nemenhah principle Daniel seemed to understand was “do no harm”, although he is considered “a medicine man”.
    - Daniel is 13 yo, in the 5th grade, but cannot read. It is highly unlikely that he researched the CAM in his deposition.

    This is one of the most blatant cases of pure ignorance I’ve ever seen. I am sure these people have good intentions, but they are betting their child’s life on BS.

    My understanding of what happened today is that he did have another X-ray yesterday. The tumor is larger and the cancer has spread. The doctor who administered the X-ray recommended an appointment be made immediately, but the mother said “no” and left with the child.

  15. weoifnkon 20 May 2009 at 1:21 pm

    Looks like the mom and her son will not respect the law (http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20090520/boy_chemo_090520/20090520?hub=TopStories). There is a nation-wide warrant for their arrest. Sometimes you just have to shake your head and wonder.

  16. DrEvilon 21 May 2009 at 1:24 am

    Seems to me that the newest form of natural selection in humans is blatant stupidity.

  17. tomcrollon 21 May 2009 at 4:37 am

    pendens proditor said “Could (or does) the Brazilian government punish members of indigenous rainforest tribes for breaking Brazilian law? For some of the more secluded tribes, it would be like aliens landing on Earth next week and punishing human beings for breaking the laws of the intergalactic society whose jurisdiction our solar system just happened to fall within.”

    You assume that these people have the option of better treatment. If there are no better alternatives readily available, then how could they be forced to take them?

    In this case, there are doctors advising and offering the best treatment and they are wilfully neglecting this advice to the detriment of their child.

    If you take it to abstraction, then for any crime, someone would have to make a complaint for the law to become involved. If they did, they would be tried.

    I think there’s a fairly clear distinction between the two cases.

  18. stompsfrogson 21 May 2009 at 1:46 pm

    “Seems to me that the newest form of natural selection in humans is blatant stupidity.”

    Yeah, you have to be outrageously stupid to get selected against in our warm and fuzzily comfortable society. You’re safer now than you were in your mother’s womb.

    And on the topic of Native American reservations: I’m pretty sure the federal gov’t has nothing to do with tribal lands. Obviously they don’t pay any taxes, but I don’t think the feds will step in to protect the citizens of the reservation. Likewise, the tribe can shield their citizens from extradition to U.S. court. I heard a story on NPR once where the poor tribes (a.k.a. “one of those thousands of tribes that don’t own a casino”) had a real problem with law enforcement because they didn’t have enough resources to protect the citizens of the reservation and all these hillbillies from Minnesota or somewhere like that were coming onto their lands and raping their women. And the Minnesota police where uncooperative and the feds wouldn’t help. Pretty much everybody seemed to think it was somebody else’s problem.

    But that’s not really relevant in this case since these people aren’t Native American at all.

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