This is crossposted on my blog.
You've probably heard of this story by now. Daniel Hauser is a 13 y/o who's been diagnosed with Hodgkin's lymphoma, which is said to be highly treatable with chemo and radiation. Daniel's family is Catholic but also "believe in the 'do no harm' philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods advocated by some American Indians." So the family prefers natural healing and feels suspicious about the effects of chemo (and rightfully so).
Daniel has quit chemo after one treatment, and he and his mother missed a court appearance, resulting in an arrest warrant for the mother and an order to seize Daniel, put him in foster care, and resume treatment immediately. It's unclear from the news stories whether Daniel himself made the decision, or if it was his parents choice. And even if it was his decision, no doubt his parents worldview is deeply influential on him. Add to that the complexities of whether or not a child can truly grasp the gravity of a terminal illness, can balance the short-term pain of treatment with the loss of years of his life, etc, and you have a very complex case. All the issues of government intervention in parenting, child autonomy, religious freedom, and the power of the medical-industrial complex factor in here in a very convoluted way.
One of the interesting things coming out of this case is the way choice is constructed. Daniel's attorney, Phil Ebert, said "I am very angry that Daniel isn't here. The case from the very beginning was about honoring and respecting a decision, a choice ... we now need to respect the judge's decision." This quote is odd in that it conflates a paternalistic decision made by an authority figure and externally imposed on the individual with that person's individual choice and autonomy. Generally when we talk about choice as a social and legal issue, we're already assuming that an authority figure such as a judge could in fact make a choice for you, but we're questioning whether enforcing that decision would be the best thing for you, or a legal action, or something we want to allow in a democratic society that values personal autonomy.
Another issue that's unclear from the news coverage is the extent to which Daniel is capable of making an informed decision on his own. According to this and other articles, Daniel is illiterate (which brings up other issues concerning religious freedom and parenting) and his family doctor was not given sufficient time to explain to him the disease, the chances that chemo and radiation will work, etc. So this does raise huge concerns that, even if Daniel is mature enough to make a decision of this magnitude for himself, he's probably not informed enough to make a truly autonomous decision.
However, the state's view of medical care and parental obligation is also somewhat problematic here. According to the judge, state law requires the parents to provide "medically necessary care." But the question of who gets to determine whether a course of treatment is medically necessary or sufficient is not stated. In a government that's so profoundly influenced by the lobbying actions of the medical-industrial complex, conventional western medical treatment will most likely be viewed as the only adequate treatment (another marvelous example of the colonization of the lifeworld by a profit-driven system). And conventional western medical practice is not evidence-based, contrary to popular belief. Further, in the worldview of the family, chemo and radiation treatments amount to an assault on Daniel's body and torture in the long term. Given this view, it's clear that the duty of the parents would be to protect him from treatment and seek alternative therapies.
So I think all these factors combine to make this case very complex and thought-provoking. In my view, it's very difficult to produce an easy answer in this case, as both sides have a number of valid concerns and a number of obvious flaws. I would be interested to hear how others are responding to this. Your thoughts?
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You seem to be muddying the waters somewhat about how effective standard medical treatment is. The bottom line - which you neglected to state - is this. Hodgkin's Lymphoma is almost 100% fatal if untreated, whereas with chemotherapy it has a survival rate of about 90% (as high as 98% if treated early, which is probably not happening now).
Perhaps some of the paranoia about the medical establishment would be relevant if this wasn't a reliably treatable illness.
If he was an adult, and decided he'd rather die painfully than have his lymphoma treated and be miserable for a while, I'd say it's not society's place to stop him (and good riddance). But he's 13, and hence not legally allowed to decide he's better off dead.
Incidentally, this is nothing new. It's been done before with Jehovah's Witnesses and blood transfusions, with the same conclusions - adults can refuse life-saving treatment, but children cannot.
OK, but you're being incredibly dismissive of a number of things here. Referring to rational critiques of the medical-industrial complex as "paranoia" is condescending and dismissive. You may have great faith that western medicine has your best interest at heart. Good for you. But there are many, many reasons not to swallow everything you're told about the medical industry. Beyond that, I believe I mentioned that this form of cancer responds very well to chemo. That isn't the case with all cancers, and if we had evidence-based medicine in our nation like other nations have, we actually would not treat many cancer patients with chemo. But you may dismiss my reliance on scientific research over western medical conventions as paranoia if you like.
An additional issue here is whether or not a teen is a child or an adult. Simply categorizing everyone below the randomly chosen age of 18 as a child and viewing them as completely lacking in autonomy is dismissive. Do you believe teenage girls should have access to birth control? Do you believe transgendered teens should be "allowed" to transition? Why or why not?
And if we claim to be a liberal democratic society, then we have to at least pretend to take people's beliefs and worldviews seriously and allow them to make decisions regarding their lives and families. I'm not advocating that he shouldn't receive treatment here, and I'm surprised you interpreted my post that way. What I am saying is that this is a complex case that involves a lot of sensitive issues that need to be dealt with. It seems to me that having a lawyer assigned as a child advocate in this case, as they do in adoption and custody cases, would be helpful in determining his knowledge of the situation and his maturity level. But simply dictating to people what they can and cannot do with their bodies without giving it careful consideration is deeply problematic.
And now you are muddying the waters further.
"Simply categorizing everyone below the randomly chosen age of 18 as a child and viewing them as completely lacking autonomy is dismissive."
Maybe. But I think most of us here agree that some age-standard should be met before individuals can make certain kinds of decisions under the law. The most obvious of these, from a feminist perspective, is consent to sexual activity. It may not be perfect, but a legal standard of consent is essential for prosecuting crimes like rape. Surely the decision to end one's life is at least equally significant under the law as the decision to have sex.
I think it's odd that you and naught view making relevant distinction s as muddying the water. Is everything so cut and dried in your view? Is there really no difference between an 8 year old kid and a 17 year old? I agree with the OP that in complicated cases like this we would want to make more distinctions and be more careful about the precedent we set than in the more straightforward cases.
No. I don't think every case is cut and dried. Not by any means. It just seems to me that a 13 year old child whose very life is being threatened by parental involvement in cult activity is not one of those borderline cases.
I think I see the issue now. I didn't intend in my post to suggest that this is a borderline case. I was viewing it as a complex case that raises many issues that should be dealt with carefully. And I do think we have to be careful about what precedents are set in court cases. I stated fairly clearly in my post that I didn't see this as a case where the patient could be giving informed consent, so maybe a more careful reading is in order here. But I do think it's deeply problematic that we assume nobody under the age of 18 is capable of informed consent.
Also, I hadn't heard that they were a part of a cult. From the news stories I read they're catholic (not usually categorized as a cult) and part of a group that prefers natural, traditional treatments over western medicine. I realize that in our culture anything having to do with traditional remedies (many of which have been clinically proven to be effective in other countries) is automatically viewed as something only crazy people would turn to (except for when some celebrity takes it up), but I didn't realize that made the group a cult.
I think in this case "cult" = "religion I don't like."
I take your point, I really do. But this is a group that has appropriated (read 'stolen') elements of Native American belief and marshaled those for their own economic profit.
Native American bloggers have identified this group as a con-artists: http://whistlingelk.blogspot.com/
So, I don't mean 'a religion I don't like' - I mean a scam that functions by raping native cultures for the economic benefit of folks not from that community to the detriment (and in this case possible death) of those roped into these beliefs.
I mean a scam that functions by raping native cultures for the economic benefit of folks not from that community to the detriment (and in this case possible death) of those roped into these beliefs
That's not a cult. It's a fucked up bunch of people, but it's not a cult.
I don't really agree thath one religion taking inspiration from another as "stealing"... Where do you think Christianity came from? From Judaism. To say any "white people" who might choose to embrace Native American beliefs is "raping" their culture feels kind of racist (and I don't agree with making light of rape either).
There are criminals, con artists, and those who are only interested in economic profit in EVERY RELIGION IMAGINABLE. Sometimes you have to separate the people who run a group from the beliefs within the group. I share some of the same beliefs as the Nemenhah Band (some) but I would NEVER consider myself a member of that group. I share some of the same beliefs as many religions, big and small, and I don't consider myself to be raping their cultures or being duped.
~Lilith
I'm not sure if the Nemenhah Band is a cult per se, but it is a bunch of whiteboy Pretendian BS. You cannot become a "medicine man" at 13 by sending money to some white guy who sends you back a pretty piece of paper.
Sure, I don't know anything about the Nemenhah Band. I also don't know of any other cults the family is involved in, because it's not covered in the news stories (that I've seen). So it seems like a huge leap to assume that they're part of a cult. And it's also one kind of dismissive language you can use as shorthand for "these people are crazy and couldn't possibly make a rational decision." I just don't see this as conducive to dialogue on the topic, but to each their own, I guess.
I feel it is relevant because these people are claiming traditional Native American beliefs as their reason for refusing treatment when they are not Native American, not real medicine men, and not following any recognized Native American tribe's beliefs and practices. The Nez Perce tribe has utterly disowned them and denies the claims of Nemenhah's band's leader that he is in any way related to Chief Joseph as he has claimed.
I agree that this group is probably deeply problematic. As I said, I really don't know anything about them. But that doesn't matter. First, no matter what kind of a scam they're running or whose culture they're appropriating, that doesn't necessarily make them a cult, since "cult" implies "mind control" which does call into question a person's autonomy. There's no indication that that's the case here. Second, the disreputable practices of this group doesn't make the family's beliefs any less valid in terms of how we view rational agents and self-determination in a liberal democracy. Even if we think someone belongs to a group that's despicable and completely wrongheaded, the law is supposed to protect their autonomy. And that's the issue I'm interested in here.
I take offense to your implying that their religion is a "cult". You don't have to agree with it, but it's wrong to mock someone's beliefs like that.
I'm curious as to why you and Naught don't answer her questions about teens and access to BC and trans teens. I think these are parallel cases.
In fact this is the precise opposite of the situation with teens and access to birth control/abortion.
In this case parents are withholding medical information and access to medically necessary procedures from a minor. This is precisely what a variety of legislation introduced by the right would like to make the status-quo regarding young women and girl's access to abortion and birth control.
I support unfettered access to medically necessary care in both circumstances. I see no contradiction in holding this position since both hold to the well-being of the minor as tantamount.
It's interesting that you assume I'm in favor of abstinence only education. In fact, I think these cases are similar in that the teens in both cases should be viewed as being capable of informed consent at some point (most likely before they hit 18). But getting all hysterical about how this boy couldn't possibly be mature enough to make that kind of decision while also arguing that teens should be able to decide for themselves concering bith control and gender changes seems a bit hypocritical to me. I recognize that in one case a life hangs in the balance while in the other two it doesn't. But the principle remains the same. Either we stick to the arbitrary age of 18 as the age of consent and continue to view all teens younger than 18 as children who are incapable of autonomy, or we open up the discussion and acknowledge the nuance and relevant distinctions at play.
Let's just run with your statement that other types of cancer do not respond well to chemo. I say you're muddying the waters because THIS type of cancer DOES respond well to chemo, so it's not really relevant.
I think it's pretty cut and dry. Refusing chemotherapy is a horrendously stupid decision that amounts to suicide - and a pretty painful form of suicide, at that. I think the logic in not allowing children to make this decision is pretty simple - if you're over 18, and still that dumb, you probably deserve to die. If you're under 18, you might still learn, and in particular you might figure out that your parents are loony.
Is there a difference between a 8 and 17 year old? Sure. Pretty much any 8 year old whose parents told him that chemotherapy was an evil conspiracy and that rubbing snake oil on his neck would cure him would go along with it, especially since chemotherapy ain't fun. At 17, you'd have to be stupid and/or brainwashed. At 13, especially given that he's being home "schooled" so effectively he can't even read, it's not that surprising he's going along with his parents.
Yeah, I think we're just miscommunicating here.
My statements concerning chemo and radiation as cancer treatments were in regard to the general question of who gets to determine which treatment is medically necessary in these kinds of cases. Of course the courts will side with western medicine in general, because that's where the power lies in our culture. But assuming that chemo is needed or helpful in every case is not evidence-based. And this is the way it's done - a blanket-judgment which I think is highly problematic. I taught with a guy whose 9 y/o daughter was diagnosed with a very aggressive and inoperable brain tumor. They were told by two oncologists that chemo wouldn't help and would probably kill her faster. So after pursuing a third opinion they were heartbroken and took her home to do whatever they could for her at home. The school administration reported to someone that she was not receiving treatment and she was taken from them, put on chemo, and died 5 months later in severe pain and unable to be in the comfort of her own home. A number of oncologists testified in court that her case was untreatable with chemo and the chemo probably hastened her death. But the courts don't consider these variations from case to case, which is terrifically problematic. Regarding Hodgkin's lymphoma, I actually said in this post that it "is said to be highly treatable with chemo and radiation." I'm sorry if that distinction wasn't clear enough. My interest in this case extends to other similar cases as well and to the implications that follow from these kinds of court rulings.
Do you have access to info on this story that I don't? Are they really using snake oil, or is any medical treatment that doesn't reap a huge profit for the medical and pharmaceutical industries count as loony and horrendously stupid in your book? I would suggest that you read up on the real situation and the critiques of western medicine by educated and experienced medical professionals from within the field before scornfully dismissing anyone who's hesitant to believe everything they're told concerning medical treatment. Many, many people point out that our medical industry would be far more effective, save many lives, and be more cost-efficient if we would abandon our irrational commitment to conventional practices and switch to evidence based medicine. You can start by looking at the c-section rate and it's link to our high infant- and mother-mortality rates. Compare us to any other developed nation that practices evidence based medicine and look at how much lower their infant- and mother-mortality rates (and c-section rates) are. It's absolutely shameful. And that's just the tip of the iceberg.
I realize that you'll most likely interpret this as me saying I don't believe he should have the treatments. That's not at all what I'm saying. I agree that in this case he should have the treatment. But your oversimplified view of western medicine and your condescending and dismissive attitude of the concerns and worldviews of others is offensive. You may not give a shit about autonomy and informed consent, but I see them as issues that are central to feminism. So on this, I think we'll just have to agree to disagree.
To address your questions about autonomy more directly - 18 is certainly arbitrary. If you wanted to argue it should be younger, well, that's a reasonable discussion to have; it's 18 by tradition as much as anything else. But we can't do everything on a case-by-case basis, so we need some sort of arbitrary age limit. I could see as low as 14 being reasonable.
Is taking birth control pills almost certain to cause a teenage girl to die? This is why there's a difference. I'm not particularly familiar with research about children and teenagers who express a desire to transition, but I think what it points to is that the minor should go on hormone blockers until they're an adult (which is not dangerous, reversible if needed, and protects them from trauma) and as an adult, they can elect to have surgery or not (I would say it's reasonable to make them wait, since not all adult trans people choose to have surgery, and this one is irreversible).
Now, do YOU believe that a teenage girl's parents should have the legal right to lie to her about contraception and her reproductive rights? How do you feel about this sort of thing when it's fundamentalist Christian parents who want to keep their kids out of sex-ed classes and teach them that condoms don't protect you from HIV or pregnancy?
Now, do YOU believe that a teenage girl's parents should have the legal right to lie to her about contraception and her reproductive rights?
I guess I'm confused about what I might have said that would suggest this. I'm arguing in favor of the idea that kids younger than 18 could be capable of informed consent and making their own medical choices. I think that if it appears a kid is capable of these choices, s/he should be given all the relevant info, including his/her family's view on it, and be allowed to make the choice for him/herself. So I'm not sure where the whole lying to them thing comes in. My view would advocate for the opposite, as it centers around informed consent and self-determination.
Incidentally, I'm not comfortable with portraying this family as lying to Daniel. I do believe they've given him false information, but it's information they fervently believe. It's only lying if you know it to be false, but say it anyway.
And no matter how wrong somebody is, I do believe we have to protect their right to teach their children in acordance with their worldview. However, I also think that when the child reaches an age of autonomy and being held responsible for their actions (as Daniel would almost certainly be if he killed someone), then we have to present them with the complete info and let them decide. If the court felt that Daniel was mature enough, they could have required that he receive counseling with his doctors with the parents not present and then allowed him to decide on his own. As it is, I doubt he is mature enough to make that kind of choice. But that's a separate issue.
But we can't do everything on a case-by-case basis, so we need some sort of arbitrary age limit.
What's interesting to me is that in criminal cases we generally do decide on a case-by-case basis. In a situation where a teen has killed someone, the DA almost always petitions the court to try him/her as an adult, and it must be decided on a case-by-case basis. In other words, both sides present evidence on why the defendant should or should not be viewed as an autonomous adult who's capable of committing a crime and ought to be held responsible. And in more and more cases the court decides that the teen is basically an adult. So we can try and imprison a "child" as an adult but we can't give them any degree of control over their lives? Seems deeply inconsistent and ideology-driven to me.
So you must not have read this part: "which is said to be highly treatable with chemo and radiation."
I guess I didn't read the OP as saying that the treatment wasn't necessary or that western medicine can never be helpful or anything like that. I do see her point that this kind of a case is complex and merits careful thought and attention. And even if you think (as she seems to) that this child is probably not mature or well-informed enough, doesn't it raise important issues? I think this case is very interesting, but am frustrated that the MSM doesn't give more relevant details. Like for instance, why is this kid illiterate? It might be helpful to know if that has anything to do with their religion.
Incidentally, my uncle is an oncologist who has told my friend who's in med school that he thinks our resistance to evidence based practice is a huge flaw in western medicine, and he cited as an example the fact that chemo is used as a universal cancer treatment even in cases and on forms of cancer where it's less effective than the alternatives. And don't forget that chemo does kill a large umber of people every year. I got the impression that this is pretty well documented based on that conversation. So portraying this as some crazy paranoia the op is pulling out of her ass seems both unkind and inaccurate.
"Said to be highly treatable" is weaseling out of stating what is actually the case - "has been repeatedly shown to have at least 90% success rate in curing."
I am aware that chemotherapy is overused; I was referring more to the paranoid "the doctors are out to get you!" undertones. It was an offhand comment - my point is that it's utterly irrelevant to the case at hand.
Now, if he had a form of cancer that did NOT respond well to chemotherapy, and responded better to another method, and the government was trying to force his parents to use chemo anyways, then perhaps this would raise some issues.
"Weaseling out" and "paranoid" and "the doctors are out to get you." Wow. You're incredibly offensive and condescending. Not to mention that your reading skills are severely lacking. I'm done.
Do you honestly expect to have a constructive conversation using insulting language like this? Wow. Just...wow.
I read it that way too. I think we're taught in our culture to always accept the authority of doctors and never question them, which may contribute to the harsh response people often get when they do suggest that western medicine may be fallible.
Okay, I think I did partly misunderstand your point and I owe you an apology for overreacting. I took you to mean that you thought the court was wrong to order chemotherapy in this case - although I do think you should see how I could come to that conclusion from reading your post. It looked to me like you were suggesting refusing chemotherapy was a reasonable choice.
I do agree with you about evidence based medicine - it should be used more than it is. I think part of why I overreacted is that I see the movement for EBM as coming from within the medical establishment (which is certainly resistant to change).
I do not, however, share your enthusiasm for "alternative medicine." It is certainly possible that there are some treatments grouped in there that do work and just haven't been clinically tried, but the vast majority of it is quackery, including all the most popular stuff - homeopathy, subluxation chiropractice, etc.
I would point out that in your story, the "medical establishment" was in fact on the parents side - the oncologists who testified chemo would not help. This sounds more like the court not listening to sound medical advice, which I completely agree is bad.
Clarification in that first paragraph - choice. -> choice in this case.
Yeah, I think I just object to blanket endorsements or rejections of anything. Generally in these cases the court endorses treatment, treatment, treatment. Even when it's contraindicated. But I'm trying to argue that the courts, and the doctors, should make these decisions on a case-by-case basis rather than the outmoded and hamhanded rule-of-thumb method that's currently employed.
I'm also not enthusiastic about alternative treatments as a general category. Some have been proven to be highly effective while others are either not helpful or may be harmful. The point is that generally speaking, western medicine is not open to them because it's pharmaceutical-driven, and no money can be made through age-old practices that cannot be patented. For instance, it's an age-old tradition not to cut and clamp the umbilical cord until the blood has stopped pumping through it. Indigenous midwives would tell you that it's because the baby needs the blood. Modern research in Australia and Germany have shown that this is absolutely true. Babies who get the umbilical blood do not become anemic and need iron supplements (if they're breastfed), and babies who get the cord blood have an easier time with their first few breaths because of the heightened levels of oxygen in that blood as a result of the mother's adrenalin levels. So the baby can take shallower breaths at first and ease into breathing while still having a higher blood oxygen level. This is all well-researched by reputable parties and well-documented. But when you read this and even present the evidence (from medical journals, no less) to OBs in our country they roll their eyes and sneeringly ask why you can't just give the kid some iron supplements and move on. This is an example of traditional wisdom that stands up under rigorous scientific scrutiny but is rejected by western medicine because it interferes with their precious little schedules (it takes 7-10 minutes for the blood flow to stop) and takes away revenue from the iron supplements that give many babies digestive problems. And there are hundreds of examples like this. I just happen to know most of the ob/gyn ones because I researched them the most recently while I was pregnant. =)
But I don't think we should sneeringly dismiss alternative treatments and traditional practices until they've been tested and proven wrong. No doubt the midwives developed the practice of waiting to cut the cord because they observed that the babies were healthier. So probably there's something to it that we ought to investigate, even if it won't rake in billions for pharmaceutical execs and shareholders.
But my views of the medical establishment aside... I do see the central issues of this case to be those of autonomy and informed consent. And I think that some sort of system like a court-appointed child advocate who is neutral as far as the doctors and the parents are concerned but who tries to assess the extent to which the child understands the situation and the options would be good in cases where we're not sure how mature and knowledgeable the child is. I think in this case it's pretty clear that he's had the facts withheld from him (the one article says the mom left with him in a hurry when the doctor started discussing treatment). And I'm pretty iffy about 13 y/os making these kinds of decisions at all. On the other hand, I interact with 18, 19, 20 y/os on a daily basis, and I'm a bit iffy on how well some of them could make this kind of decision too. So I think abstaining from a blanket judgment about the age at which you can make these kinds of choices, about the type of treatment that should be pursued, etc is the best course of action.
Sure, but that happens just as much with innovations in medicine that are made in the Western medical establishment. Doctors are very, VERY resistant to change for a number of reasons - among them, of course, simple arrogance, but also a fear of doing something differently, something going wrong (even if it's unrelated), and getting sued. If you've read Blink by Malcolm Gladwell, it has an excellent example; Lee Goldman's heart attack decision tree.
Part of the problem is also that stuff like the umbilical cord cutting tends to get lumped in with stuff that really is 100% snake oil like homeopathic remedies.
Right. My point is just that it's counterproductive to lump all traditional and alternative remedies together and dismiss them as quackery. Many of them have been proven and are in use in other countries. Particularly countries where medicine is not pharmaceutical-driven. And that's a significant link, especially given the fact that the pharmaceutical companies have repeatedly been caught actively trying to prevent research on prevention and natural remedies from occurring, as it cuts into their profits.
His disease is treatable and if he does not receive this treatment he will very likely die. His parents are worried about the long-term effects of chemotherapy, but if he does not undergo chemotherapy there will very likely be no long term. If he was terminal and about to die then I could maybe understand why parents would want to refuse therapy. But in this case, it seems like unconscionable neglect. I saw a news report where after hearing that his son's cancer had spread, the father replied that X-rays don't really mean anything. Call me close-minded and disrespectful, but I think that these are ignorant people who are brainwashing their kid.
Before the mother and son fled he visited the doctor and said his level of pain on a scale of 1-10 was a 10. The doctor also asked him if he wanted to know more about his disease. He answered yes and his mother then made an excuse to leave. Even if he was old enough or educated enough to make an informed choice, his parents are purposefully denying him information. The bottom line is this child is being denied the health care he deserves.
I can understand why it's highly problematic for the government to make health choices for people. And I'm not ready to say that he should be forced to undergo therapy. I guess, I just feel a lot of contempt for his parents.
And the OP keeps saying that western medicine is not evidence based, but if you search pubmed you'll see numerous studies on the effectiveness of therapies for hodgkins lymphoma. I doubt (and again maybe I'm being close-minded) that there's compelling evidence for the natural healing techniques that his parents are using.
I "keep saying that western medicine is not evidence based"? I believe I mentioned it once. And the fact that chemo is often used in cases where it's contraindicated and causes more damage to the patient is in fact a reason to be cautious about forced cancer treatment. This is well-documented if you wish to look into it. However, I also said, at the very beginning of the post, that Hodgkin's is highly treatable with chemo. You can selectively read my post if you want, but please don't attrubute things to me that I never said.
The only thing I claimed you said was that western medicine is not evidence-based and you clearly did make that claim. I'm sorry that I thought you said it more than once. I think I've heard you make similar claims in previous posts.
And yes, you mentioned that hodgkins lymphoma is highly treatable, but I feel that overall this fact was underemphasized in your post. It seems a bit beside the point to talk about the fact that chemo is used in inappropriate cases and about how western medicine is profit-driven etc., when in this particular situation there is sufficient evidence that chemotherapy is necessary for this child's survival.
Perhaps I wasn't clear enough about my interest in this case. One concern here is that as each court ruling comes in overriding the family or the individual and ruling out the possibility of alternative treatments, this becomes precedent. As in, this is how we've done it with other cases in the past, so this is how we should always do it. Refusing to acknowledge the complexities of the case leads to rule-of-thumb style court rulings and public policy that do result in treatments being forced on people in cases where they're not only unhelpful, but downright tragic, as in the case of my former co-worker's daughter mentioned in the comment above. I never tried to say that chemo wouldn't be effective in this case. But I do maintain that the unswerving commitment of both the courts and doctors to a one-size-fits-all kind of response is deeply problematic and ought to give us pause if we care about autonomy and informed consent.
The parents' argument is garbage and of course the child cannot legally make an informed decision himself. The choice is: get chemotherapy and have an overwhelmingly good chance you will survive, or die.
If you as a parent are incapable of making this choice on behalf of your child then yes, the state takes control of the situation. Parents who try to pray away their kids' diseases are starting to get prosecuted a little more uniformly as well, typically after the child (unfortunately) dies.
The parents' argument is garbage to you. It's garbage to me too. But to them it's not. If that's what they truly believe, then their argument is perfectly rational. There's nothing in our consitution or laws that say you must share a worldview with mainstream society. In fact, portraying people as irrational and incapable of functioning simply because they don't see things your way is in complete opposition to liberal democratic values. It's actually a feature of fascism. You simply cannot legislate and use the courts to impose consensus.
I'm not religious in any way. But I do believe that if we care about autonomy and self-determination we cannot marginalize and abuse people simply because they don't agree with us.
It's about as objectionable to stop a parent from killing their child through the denial of life-saving care for X reason as it is to stop a parent from killing their child with a knife because they believe the child is Satan. Sure it's logical from the parent's end, but that doesn't mean it's permissible.
Your defense of autonomy in this post seems implicitly tied to the "big pharm is evil/alternative medicine is only stupid because no one has studied it" sentiment you've expressed several times in the thread. Parents are not free to kill their children with snake oil just because mainstream medicine has problems.
If you still think I believe this child shouldn't receive treatment then you're clearly incapable of actually reading anything I say, and I'm done wasting my time on you and your hateful, smug, superior attitude.
I wrote about this on our blog as well. One point that I think is being overused/misused is the 90% odds of survival with chemotherapy vs. 5% odds of survival without chemotherapy.
I find those odds to be rather misleading. First of all, it's not actually a 90% chance of "survival" but a 90% chance that the tumor will shrink. You can argue that the tumor shrinking equals survival, but only if the side effects of the chemo and radiation don't deteriorate his health even more. (Also, there's a question as to the validity of that 90% to begin with but I'm not qualified to argue either side of that debate).
Even if the 90% odds are accurate, they can't possibly have any grounds to claim that there is only a 5% chance without the chemotherapy. Those odds suppose that if they do not do the chemo/radiation, then they are doing NOTHING which is clearly not the case. They are currently treating the cancer with natural and alternative treatments. Maybe those will never result in 90% odds, but 5% isn't fair either - you can't actually predict odds on something without doing some research into it. Just because the U.S. mainstream medical industry doesn't find it time-worthy or cost-effective to even attempt to study these methods, that doesn't mean they don't potentially work (at least more than 5%).
The numbers really can't ever be argued fairly because mainstream medicine will never accept alternative medicine as viable. And chemo is loaded with both short and long term side effects (something even the biggest chemo proponents won't deny). In fact, some studies have found that patients treated for Hodgkin's with chemotherapy are more likely to develop other cancers later on, than those who were not treated by with chemotherapy.
I'm not suggesting that the chemo wouldn't help or that it would kill him... but there ARE risks involved and it worries me what kind of precedent a case like this will set.
~Lilith
Okay, if you would prefer the "survival" statistic, it's 85% after 15 years, which is still very, very high.
My issue was more with the 5% than the 90% odds. You can't predict odds on something that you've never researched. I'm not saying that these alternative treatments will cure him... but I can't say that they won't either, because no one will take the time to even find out.
~L
Exactly. And why is that? Because there's no money to be made in alternative treatments.
"Those odds suppose that if they do not do the chemo/radiation, then they are doing NOTHING which is clearly not the case. They are currently treating the cancer with natural and alternative treatments."
This is the same as doing nothing.
That's your opinion based on the fact that the mainstream medical industry doesn't study alternative methods. Vitamin C could be the cure for cancer, but we'd never know because companies like Merck can't patent Vitamin C so they don't even waste their time studying it. (That's an example by the way, I'm suggesting that Vitamin C does cure cancer).
It is because our culture is so closedminded to alternative healthcare that potentially toxic treatments are considered the only way.
This point would be stronger if mainstream medicine wasn't studying Vitamin C as a treatment for cancer. However, mainstream medicine keeps doing things like this: http://clinicaltrials.gov/ct2/show/NCT00441207?intr=Ascorbic+acid&rank=19 and http://clinicaltrials.gov/ct2/show/NCT00329498?intr=Ascorbic+acid&rank=18 and http://clinicaltrials.gov/ct2/show/NCT00626444?intr=Ascorbic+acid&rank=40 which kind of ruin the point.
OK, my bad. I should have said that they don't put in nearly the same amount of money or time into studying "natural" remedies as they do pharmaceutical ones.
~L
Not to mention the fact that pharmaceutical companies routinely use tax money to block research into alternative treatments and preventative measures such as preventing exposure to environmental toxins.
In your view. Does everybody have to share your view in order to be rational or worthy of making their own choices? Interesting...
On the Nemenhah Band topic - without generalizing to other similar groups, a small amount of research on the internet indicates that they are in fact scam artists. Their leader has been convicted of fraud for selling a supposed cure for cancer and AIDS (obviously, it didn't work).
Also, and depending on your viewpoint more damningly, they claim to be based on American Indian spiritual traditions, but legitimate American Indians also claim that Nemenhah Band are frauds with no connection to real traditions that are exploiting their
There are scam artists in every religion imaginable. I don't care what "group" you are a part of, your beliefs are your beliefs.
How does that make them a cult or render people who legitimately believe their teachings irrational? So you don't agree with them, and they're undoubtedly a very shady group. So now anyone associated with them loses their rights? Wow.
I have huge, huge issues with the Mormons who practically run this town. Almost every feature of my worldview lies in direct opposition to theirs. But I don't see that as a reason to question their rationality and autonomy simply because their views differ from mine. I also don't think it justifies verbally abusing and belittling them. In a liberal democracy we claim to be committed to the right to self-determination. You might reject that, but it's still allegedly a core belief and thus ought to factor into court decisions.
I didn't call them a cult and I don't think they are. The people who believe them are I really no more or less irrational than, say, Catholics who believe in transubstantiation, Mormons who believe Jesus came to America, or whatever else.
The parents are, on the other hand, being duped by the leadership of the Nemenhah Band. There's a ton of evidence that Landis, the Nemenhah Band's leader, is a scam artist. In particular:
-Claims to be a descendant of Sitting Bull. He is not.
-Was convicted of fraud for lying to investors about a mushroom-growing business.
-Charges a $250 membership fee and a $100 monthly fee. Real practitioners of traditional American Indian medicine never do this, and in fact a number of them have vocally criticized the Nemenhah Band. This is part of their requirements for treating Daniel, so they're bilking the Hauser's out of money here.
-There's a bunch of other stuff about him and his church claiming to belong to American Indian tribes that they do not.
To sum up: the Hauser's are most likely just being foolish. The (leadership of) the Nemenhah Band are scam artists who are profiting by appropriating American Indian culture and tradition, packaging it, and selling it for $100 a month to the desperate and gullible.
Yeah, I agree with that, and I apologize for attributing the claim that they're a cult to you. Other commenters said that.
Just to be clear, since *some of you* seem to be harping on certain details and ignoring others. I'm more concerned with the precedents this ruling might cause... While this is an extreme case, I feel very strongly about the right to practice your religion as you see fit and the right to have autonomy over your own body. In this particular case, the judge is probably right... but is he "right"?
I also think that while it's a legitimate argument to say that the child's medical wellbeing trumps his parents' religious beliefs, it is NOT okay to say that having a religion that differs than yours means someone is crazy or deluded or in a cult.
As for the chemo issue: I'm not making the argument that it is ineffective. I'm making the argument that it carries many short and long term side effects (including a weakened immune system and the increased chances of getting other cancers later on) so it's not necessarily such a clear cut "cure the cancer or let him die" type of decision for every person.
~Lilith
Well, I think it's more about the rights of children than "the right to practice your religion as you see fit and the right to have autonomy over your own body." If Daniel were an adult, I'd agree that he should not be forced to have the needed chemotherapy.
I'm not sure how this case greatly differs from the cases concerning Jehovah's Witnesses. For those not familiar - JWs consider receiving blood transfusions a violation of their religious beliefs. Adult JWs will on occasion need a blood transfusion to live, refuse it, and die, which I agree is their right. Where it gets trickier is when children refuse blood transfusions/parents refuse on behalf of their children. It has been repeatedly ruled that they do not have this right.
I guess it comes down to what constitutes a child and what constitutes an adult (as has already been discussed above). I don't know if Daniel is actually competent to make his own medical decisions, but I can think of many other 13-year-olds who should be given the right to make their own choices. An infant can't consent to circumcision, yet it's practiced widely despite there being little-to-no medical need. There is evidence that chemotherapy can cause harm, even if there is also evidence that it can cure cancer. I don't have to agree with the Hausers to understand why they might object to subjecting their son to this kind of toxicity against their religious beliefs. My point is that this case, although extreme, might set a precedent that takes away rights in less extreme cases.
Well, arguing at what age/under what conditions minors should be allowed to refuse necessary medical care is a reasonable question. I don't think we can do better than an arbitrary age cutoff though. It's unreasonable to expect a court to make decisions about whether a child is mentally competent to make a medical decision when they're likely to be influenced very heavily by whether the judge thinks their decision is rational or not. Besides, there are a ton of things minors can't do but adults can that are arbitrarily cut off at some age.
Well that's a really good point. It's not rational to the judge to forgo chemotherapy for alternative treatments and prayer. It's not rational to most people to risk death for your beliefs. But just because something is not rational to you or me, who are you or I to say that it's not okay?
I'm not saying that I think Daniel Hauser should forgo the chemotherapy but I absolutely understand his and his parents point of view. I take strong offense to the people calling them crazy or cult members for having a different set of religious ahd philosophical beliefs that we deem "rational".
~Lilith
That should say "than", not "that" we deem rational.