A Child’s Choice?

I woke up this morning to an appalling article in the local paper.

Daniel Hauser has what doctors consider one of the most curable types of cancer, Hodgkin’s lymphoma.

But the 13-year-old from Sleepy Eye, Minn. and his parents don’t want him to have chemotherapy and radiation, the standard treatments. For the past three months, they have ignored the advice of his cancer specialists and turned to natural therapies, such as herbs and vitamins, instead.

Yes, it’s partly appalling because a child will probably die if no one can intervene. Danny’s parents are demonstrating one of the great dangers of belief in medical woo–the abandonment of proven, effective, life-saving treatments. I’d say more about it, but unlike some people who get more eloquent in the face of this kind of outrage, I mostly sputter. I’ll leave that part to the experts.

Aside from the criminal stupidity of the parents, it’s also appalling that the paper was reporting on the child’s wishes as though they matter in this situation.

Daniel, one of eight children, has asserted that treatment would violate his religious beliefs. The teenager filed an affidavit saying that he is a medicine man and church elder in the Nemenhah, an American Indian religious organization that his parents joined 18 years ago (though they don’t claim to be Indians).

“I am opposed to chemotherapy because it is self-destructive and poisonous,” he told the court. “I want to live a virtuous life, in the eyes of my creator, not just a long life.” He also filed a “spiritual path declaration” that said: “I am a medicine man. Some times we teach, and some times we perform. Now, I am doing both. I will lead by example.”

Right. May I remind you that he’s thirteen? This is the point in life when kids tell you they want to grow up to be professional wrestlers, when their best friends are determined by age and physical proximity instead of any real affinity, when they may or may not be old enough to be left alone for long stretches without a babysitter. We don’t let thirteen-year-olds drink, vote or drive. We don’t even let them set their own bedtime on school nights.

Why is anyone asking this child his opinion of decisions that will affect his health, much less his life expectancy?

For that matter, where is the news in the fact that Danny agrees with his parents? They’re his parents. Stereotypes of rebellious teenagers aside, Danny is at an age where kids are just starting to develop opinions separate from their parents’ on any topic of greater importance than eating vegetables.

Even realizing that denying proper medical care to one’s children is child abuse (which it is), there’s no reason to expect that Daniel would disagree with his parents. If part of the abuse involves keeping the child isolated (which it typically does), kids don’t want to upset the stability of any part of their tiny worlds. Plus, it’s bad enough being abused; kids don’t want anyone else to know that someone treats them that badly.

For that matter, kids are notorious for indulging in magical thinking. They will deny anything, even their own hands caught in the cookie jar, if they don’t like the implications. Admitting abuse, even to themselves, makes it more real.

And with magical thinking, we come to the question of Daniel’s religious beliefs. Our society does habitually treat kids his age as being competent to choose their own religion. It’s the age of confirmation, taking one’s parents’ religion as one’s own. But should it be?

I remember being thirteen, when most of my friends were taking their confirmation classes, and being appalled. I didn’t grow up religious, so the traditions and expectations were alien to me, but I understood that people took religion very seriously. Consequently, I was horrified that people my age were being asked to make a decision that momentous, with implications for the rest of their lives. We were just kids. No class was going to prepare us for that!

Now, of course, I understand that part of the point is to have that commitment made before abstract thinking and reasoning really kick in, but that only underscores the irrelevance of Danny’s religion. Is he old enough to understand the implications of the fact that the Nemenhah website talks almost exclusively about donations and freedom from government interference? Can he comprehend why there might be something odd in a group that embraces “Native American” spirituality and “traditional healing” but whose members appear to be almost exclusively of European descent? Is he in a position to evaluate the critiques of the group?

No, he’s not. He’s not even old enough to endure the testimony about his chances of survival with and without treatment.

I’m sorry, Danny, but that’s why what you want matters not at all right now. This isn’t your decision to make. You’ll be old enough to understand that someday, assuming someone steps up and makes sure you live that long.

Tags: , , , ,

21 Responses to “A Child’s Choice?”

  1. May 9th, 2009 at 1:43 am

    becca says:

    Ugh ugh ugh ugh ugh…. *shudder*
    No, not the kid dying. That’s sad, not disgusting.

    Your attitude is what I find appalling.
    Look, I also remember being 13. I was apparently a much different 13 year old than you were.
    First, we shouldn’t be denying 13 year olds the things you list.
    I went to a summer camp affiliated with a co-op. And they *did* let you vote, albeit at 14 rather than 13.
    As for driving or drinking, I don’t view those as essential rights for anyone (adult or child), but there are certainly cultural contexts where it makes a lot of sense for 13 year olds to be able to do those things. I’m guessing didn’t grow up on a farm, if you think there’s something magical about being 16 and operating internal combustion engine powered machines (granted, some kids probably need more supervision than my cousin got- he drove a tractor into the barbed wire fence at age 8… on the plus side, by 13 he had the hang of it). And there is little doubt in my mind that part of our society’s perculiar pathologies regarding alcohol are intertwined with setting that age at 21.
    And setting your own bedtime on a schoolnight? Give me a break.

    Second, the things you list are, to my mind, less essential than the right to decide whether you live or die.
    Now,. I’m not necessarily opposed to installing reasonable precautions to keep people, especially young people, from making irrevokable decisions without good information from multiple sources. (in other words, in terms of a practical guideline here, we could probably find some common ground)
    But ultimately, on a philosophical level I think the right to decide whether one lives or dies is essential. On a practical level it is as near to inalienable as it gets. I don’t think deciding whether you want to live is a right that can be “earned” by achieving a certain number of years on the calendar.
    In other words, if he had a totally incurable cancer and was in immense pain, I would not be any more against his suicide than if he were older. His age would make the fact of the cancer more tragic on an emotional level, but it does not make the decision any less his right.

  2. May 9th, 2009 at 6:34 am

    Mike Haubrich says:

    Becca, what kinds of things did they let you “vote” on at 14? Whether to have s’mores or hot dogs at the fireplace? Whether to sing ‘Kumbaya” a capella or with guitar?

    At 13, to give someone the status of “elder” in a phony tribe, with the right to decide that he is smarter than doctors, and to forego medical treatment in favor of non-effective cures is something I think very few, if any 13-yo kids could properly handle. Sure, his wishes can be asked, but by no means does he have the capacity to understand the implications of what he is being asked to do.

    Do you remember the story of the 16 year-old who was being touted by the climate-change denialists as being smarter than climatologists because of her self-acclaimed doctorate in “Google U,” also fed by her father’s own denialsm? She thought she was smarter than the scientists, because that was what she was being taught by her parents, and they taught her how to use conspiracy-theory thinking to make declarations that AGW is a hoax. That was alarming enough, but she wasn’t putting her life in danger. Danny is.

    The kid needs to be assigned a “guardian ad litem” to make decisions in his place, decisions which he is clearly not able to make for several reasons. One is his lack of medical education. Another is that he simply lacks the maturity to make this sort of decision.

    I grew up in a rural area, and even though my parents had sold the farm when I was 13, I occasionally got to drive tractors and pickups and even a combine, but in the fields and on the rural roads only because it minimized the risk to other drivers. Arguably, yes, I was at risk of killing myself, but I wasn ‘t given the keys to choose between life and death. I was given the keys so I could ferry lunch and water to the guys in the fields.

  3. May 9th, 2009 at 8:39 am

    Greg Laden says:

    I find myself strangely agreeing with much of what Becca says here, having been 13 myself once. My daughter is right now 13, which adds an element that also makes me shudder. For several different reasons.

    Becca, I think your thoughts are interesting but could be fleshed out. Into a full blown guest post right here on Quiche Moraine. Yes, that is what I think….

    One more thought on this for now: I think this conversation is starting to touch on two different levels: The personal/individual and the societal (with respect to the role of religion and stuff), and that very different perspectives might be found if approaching this particular story from those directions. In ways that I can’t think about right now because I see the drizzle has let up and the fish might be biting.

  4. May 9th, 2009 at 9:46 am

    Stephanie Zvan says:

    Becca, there’s nothing arbitrary in how I’m looking at Danny’s age. There’s a hell of a lot of data out there on how kids handle information at different ages. Giving Danny information from multiple sources is great, but the fact that he can’t multitask well enough to consider it all at the same time is still a problem. If he can’t process the information, it can’t be an informed decision. When it’s his life at stake, it’s abuse to ask him to make it. And it’s still unsurprising to the point of irrelevancy that when faced with more information than he can process, it’s his parents’ wishes that make the decision.

    As for which decisions teenagers get to make when, I am in no way saying teenagers shouldn’t be allowed to make decisions. They need all the practice they can get in a relatively safe environment. What I am saying is that, as adults, we do and should look very carefully at which decisions teens are making well and which they’re not. The ones they’re making well? More power to them. The ones they’re not? Well, then it comes down to which consequences of bad decision-making are educational rather than damaging (and yes, I know it’s relative). In every case, though, it’s up to the adults with their full cognitive development to figure this stuff out so the kid makes it to adulthood in decent shape.

    This has nothing to do with infantilizing teenagers and everything to do with accepting our responsibilities as adults.

  5. May 9th, 2009 at 11:18 am

    Alden says:

    Yet, they allow children to make decisions about having abortions…

  6. May 9th, 2009 at 11:40 am

    Stephanie Zvan says:

    To be clear, let me also say that I’m not even saying that the brain is immature at thirteen. I’m saying that a child’s brain is largely busy with other activities (i.e., soaking up information like a sponge). That’s a good, necessary thing, but it means that we shouldn’t treat kids like adults when they’re busy being kids.

    Alden, that’s nowhere near as simple as a one-line comment makes it out to be. There are very good reasons to have parents involved, and there are very good reasons for kids to be able to keep some parents from knowing anything about it. We can’t make absolute decisions about parenting based on the idea that all parents are good parents. Not if our goal is to protect children.

  7. May 9th, 2009 at 12:19 pm

    Mike Haubrich says:

    Piling on with Stephanie – in many situations a parent should be involved in making a decision wtih the kid on whether or not to carry a child or have an abortion. But we also need the courts to be able to decide whether or not a child carrying a baby is in an abusive situation with her parents and if they would be forcing a decision on her that is not in her best interests; such as if she had been raped by a family member. Abortion is rarely a decision made lightly, as the RR characterize it.

  8. May 9th, 2009 at 12:30 pm

    becca says:

    “Becca, what kinds of things did they let you “vote” on at 14? “
    Whether to sell off land or continue to grow pine trees on it to use for the Christmas tree fundraiser was a big issue the time I was around (shockingly, the youngsters tended to take the longer view of things on that kind of issue). But standard votes include representation on the Board of Director; by-law changes; all of the nuts and bolts of running a co-op.
    Oh, and I don’t remember singing Kumbya. We did sing “Universal Soldier” and “Solidardity Forever” and “We Shall Overcome”. Oh, and “Ripple” (I love that song).

    “Giving Danny information from multiple sources is great, but the fact that he can’t multitask well enough to consider it all at the same time is still a problem” …the hell? My multitasking skills have decreased substantially since I was 13 (they probably peaked around that time). I’m happy to consider data rather than anedote, but you’re just meeting me with handwaving and claims that don’t match with what I’ve seen of the world at all.

    I agree that in general, adults have a responsibility to children (and teenagers) to help shield them from some of the more ugly potential consequences of their decisions. I’d actually argue that this responsibility is one that anyone with experience and power has toward anyone who is relatively inexperienced/disempowered- but when you extend it to everyone, you see very rapidly that it’s a lot more complicated than “protect the weak!”.
    Doing this is a very delicate thing; when you exert too much control you remove some of the educational value, and much of the essential right of making deicisions “The Power of Choice Must Involve the Possibility of Error–That is the Essence of Choosing”. I think that, in this case, we have to consider what to do when you can’t ‘buffer’ the decision well. You can decide for them, or risk a very bad decision.

    If we have a responsibility here, I don’t believe it is to make decisions for people (children and teenagers are still people). The responsibility is to determine how we can adaquetely communicate on an appropriate level such that individuals can make informed decisions themselves.
    This is a more generalizable principle, and a very difficult one. I recently met a clinical psych grad student who studies mentally retarded mothers… you want to talk about a messy ‘informed consent’ set of rules; particularly when doctor-patient confidentiality isn’t something CPS has to respect… I think the grad student wants to do her future research on how to actually get meaningful informed consent.
    Doctors and some scientists regularly grapple with how to best get ‘informed consent’ across huge linguistic and cultural barriers; how to approach situations in which tremendous power differentials are present; how to approach situations in which life-or-death choices are made.
    In most cases, the satisfying notion that “we know what’s best for them” (even if true) isn’t a sufficient moral justification for removing the right to choose.

  9. May 9th, 2009 at 12:40 pm

    Stephanie Zvan says:

    Actually, multitasking is a link in my original comment. Looks like we didn’t get link colors fixed everywhere. We’ll have to work on that.

  10. May 9th, 2009 at 2:16 pm

    Greg Laden says:

    I guess I should have mentioned the obvious: The fact that this kid believes he is a shaman is itself a very important factor, irrespective of his age, as to what a court should decide to do in his interest. The fact that we live in a society in which religion is held to be above most other factors (all other factors?) in making decisions means that a compassionate and intelligent judge will have to fake it.

  11. May 9th, 2009 at 2:27 pm

    ambivalent academic says:

    “Why is anyone asking this child his opinion of decisions that will affect his health, much less his life expectancy?”

    Tricky, Stephanie. There’s a very long-standing debate in bioethics circles about patient autonomy – for kids, the elderly, the mentally ill. Many (but not all) people in these groups need help making good decisions about all kinds of things, including their health. But to write off any opinions and decisions this kid can arrive at about his own life strikes me as really paternalistic.

    Yes, he’s 13. He doesn’t have everything figured out yet. But why are we “letting him” have a say in the course of his medical treatment? Because he’s human and he’s capable of rational thought. He may not be able to execute perfectly rational thought all the time, but that’s really beside the point. He may be inappropriately influenced by all kinds of adults in his life, so it’s time to get him an advocate who can help him work through this decision and fully understand all the consequences. It is not time to hand a decision down to him from our oh-so-enlightened adulthood.

    I don’t have the answer to this dilemma. I don’t think that there is a clear one. But a blanket statement that letting this kid in on the process of deciding things about his life is somehow patently and obviously wrong, well, I can’t support that view.

  12. May 9th, 2009 at 2:52 pm

    Stephanie Zvan says:

    Yes, AA, that is an overstatement. It was late, and I’d spent all day pissed off about the situation without getting a chance to write about it. It’s a combination that doesn’t make for well-tempered sentences. Also, note that the comment was meant to be aimed at the newspaper and was about their reporting, which treated Danny’s statements as the most important factor in the situation.

    There are plenty of decisions he should be making. “We have a little flexibility in your treatment schedule. Do you want to push ahead and get through the next round, or do you need some more time to rest?” “What kind of food should we have around so you’re more tempted to eat?” “Do you want to go to the prayer ceremony after your treatment, or will you want some peace and quiet?”

    Again, though, the difference between decision-making in childhood and adulthood isn’t so much a question of enlightenment as it is of capacity, and there’s certainly no guarantee that any single adult will make the best decision either. That’s why this is in court.

  13. May 9th, 2009 at 6:18 pm

    Greg Laden says:

    I took the comments of Stephanie’s along the lines of “we don’t let 13 year olds do this and that” as context … In truth, most 13 year olds can probably drive but we draw a stricter line. In truth may 13 year olds could probably make intelligent decisions about voting, but we draw a stricter line. Now we have a 13 year old who is making the stoopidest decision anyone has made all year and there are people asking the question as to whether or not his decision making righs should be validated or invalidated. If this was not about religion, we would not be having this conversation and the child would already be half way to a cure.

  14. May 9th, 2009 at 6:37 pm

    luna1580 says:

    WHAT REALLY NEED TO BE PERSECUTED HERE IS “THE NEMENHAH BAND.”

    this faux-native group needs to exposed and stopped ASAP. it was invented by someone going by “cloudpiler” SPECIFICALLY to dodge legal persecution of the fact that it is/was a company selling “native herbs” in a MLM scheme which advises against all “western medicine.”

    -all the “nemenhah” “cloudpiler” “native health” “native american nutritionals” and “mentinah” (the mormon source text) sites are down right now (imagine that!)
    what follows is from http://www.rumormillnews.com/cgi-bin/archive.cgi?read=83663

    “Cloudpiler, a grandson of Chief Joseph, the great Nez Perce Chief and others who are part of Native American Nutritionals became recognized Native American Practitioners by seeking adoption into the Nemenhah Band and Native American Traditional Organization.
    As Shahaptian Guides, they gained a valuable connection with the Holistic Principle of Native American Healing… as well as a legal safety net where natural healing is concerned.
    You can read more about this on their webpage… the long and short of it goes like this:
    By becoming Native American Practitioners, they (or YOU or anyone who gets adopted) qualify under the protections and exemptions provided by the Federal Native American Free Exercise of Religion Act of 1993 (NAFERA).
    This Act of Congress was passed almost unanimously by both houses of legislature in Washington, D.C. The Act protects the Spiritual Path of Native Americans and their Traditional Spiritual Leaders.
    NAFERA dictates that “no laws or statutes may be enacted that tend to regulate the establishment of Native American Religions or the free exercise thereof.”
    This makes exclusive licensure laws that have either been passed by, or are presently on the dockets of every state legislature in the country to fall under the NAFERA exemption. It also applies to CAFTA and other trade regulatory statutes!!
    The bottom line is this: Native American Practitioners are exempt by definition from such regulatory statutes.”

    someone very evil has insulted real natives by using this legal loop-hole to make money, and has created a “native religion” out of a “lost” mormon “tribe” just to sell supplements, and now this kid is going to DIE!

    the “nemenhah” are faux-natives, you “become” one by giving them $90 and then a continual $5/month religious “due.” and all their “herb cures” are sold by “cloudpiler’s” own “native american nutritionals.” you can read what some real natives think of them here:

    http://www.indiancountrytoday.com/archive/28147394.html

    http://www.newagefraud.org/smf/index.php?topic=1177.0

    at that second link i just provided, you’ll find gems like:

    “Cloudpiler is a pseudonym for a Philip Landis, sentenced to 2 10-year prison terms in Montana for fraud. He has also been featured as a shaman, providing peyote to his “followers”…or he was until the Utah Supreme Court stepped in.
    He latest “project” is the Mentinah archives. After doing some independent research, my results are thus: he is bogus.”

    they’ve got rundowns on what domains he owns and other dirt. plus the real history of how he “discovered” the existence of the “nemenhah” in some mormon texts he found and “translated” himself. wow, these actual native people (and a few LDS church members too) seem to hate this guy and his “nemenhah” nonsense.

    Someone needs to bring this information to the attention of the child at risk, and perhaps to the judge in Minnesota as well.

    do you think daniel hauser would be so willing to die for his beliefs if he knew that those beliefs were carefully crafted by a known fraudster who wanted to use new-age-generic “native wisdom” as a cover story to sell “holistic medicine” supplements without the risk of being sued for fraud again?

    the knowledge that this kid is willing to die for a belief in a religion invented by a con-man with a MLM supplement company to push is much MUCH more disturbing to me than anything else in this story. i guarantee daniel and his parents don’t know this truth.

    there is more discussion of landis and his nemenhah nonsense in the comments over here:

    http://scienceblogs.com/pharyngula/2009/05/death_by_religious_ignorance.php#comments

  15. May 9th, 2009 at 10:12 pm

    teddlesruss says:

    Too much value is placed on the sacred value of life I think. We fight strenuously for the “right to life” of a bundle of embryonic cells, we “legislate” against voluntary euthanasia, we consider suicide “immoral” and “sacrilegious” and we all think we know what’s best for everyone else. Entire nations have been made to endure the standards of one person because that person thought they had THE perfect Utopian solution for the world.

    And of course, the value of a life depends not on *your* standards, but the standards of the person to whom the life belongs. People are always too quick to ascribe to others, feelings and attitudes similar to their own. In fact, I for one don’t find that my life is “sacred” or to be saved at any cost. When I am too ill to be able to enjoy my life any more, I would expect to be able to end it without having a thousand moral crusaders making my remaining time miserable by fighting me all the way. At some point I will find the value of continuing my life to be less than the value of removal of my pain and misery.

    Slippery slope you’re on Stephanie…

  16. May 9th, 2009 at 10:40 pm

    Stephanie Zvan says:

    teddlesruss, where exactly do you see a sanctity of life argument coming from me? Did you read the part of the post in which I talked about religion? I can pretty much guarantee that everyone who reads your comment who knows me in the least will be hooting at the idea that that’s why I wrote this. As Greg pointed out, if it weren’t for the idea that some beliefs are too sacred to be challenged by reality, this wouldn’t be news.

    As for slippery slope arguments, I generally find they come in two flavors: those from people who don’t want to argue directly with what I’m saying (strawman arguments) and those from people who aren’t capable of assessing a situation on its own merits. Now, if you really feel that decisions made by adults with terminal conditions have a bearing on those made by a child with a cancer that has a 95% cure rate, why don’t you ask me what I think of those decisions instead of assuming you know?

  17. May 9th, 2009 at 10:47 pm

    Stephanie Zvan says:

    Actually, luna, if you click on the Nemenhah link I provide in the post, that site’s still up, and you can see that the prices have increased. They’re now $250 initially plus $100 yearly.

  18. May 10th, 2009 at 8:20 am

    Joel says:

    “Because he’s human and he’s capable of rational thought.”

    Capable of rational thought? Being capable of rational thought and actually excercising that ability are two different things. At 13 years old, after spending your entire life learning from your parents and your local community, you’ve only just begun to consider your independence, question what you’ve been taught and search for your own answers. At 13 years old, you’re only standing at the doorway of rational thought.

    In any case, there is nothing rational about disregarding what we now know about the human body and disease in order to cling to an ancient means of understanding these things. Shame on the parents and his community.

  19. May 10th, 2009 at 11:04 pm

    cm says:

    This child and his parents should *not have one damn right* to refuse treatment, particularly if they believe it is curable.

    People on this thread who are ascribing mature judgment, existential perspective, and autonomy of choice to a 13 year old boy suckered by a con artist–are you kidding me? Are you kidding me?

    Children vary, sure, on some distribution of maturity, and there are cases in which 13 year olds are wise beyond their years. But that is not a good basis for law. I would much rather the law be hamhanded in these cases, erring on the side of mandating reasonable treatment on child patients, than introducing any margin for the judgment for a 13 year old, even a 17 year old.

    If the cult he’s a part of instructed its 13 year old boys to ritually cut off their genitalia because it is “the way of Coyote”, would you allow the boy to make this same decision? If you were there with two burly policemen, and you were in charge, and the boy had the ritual knife, would you instruct the two big cops to stand down and let him do it? Because it is his right?

    If you couldn’t stand by and watch that happen, ask yourself: why should he have the right to decide to die for similar beliefs, at his age?

    How can people get involved with this case to help make sure the right thing happens here?

  20. May 22nd, 2009 at 7:28 pm

    Sarah says:

    Also, what the media fails to tell us, is that Danny has a learning disability and cannot read, which makes it that much more unconvincing that he is able to make proper decisions for himself. I wish he had better parents. An unfortunate situation.

  21. May 25th, 2009 at 9:13 am

    Stephanie Zvan says:

    Sarah, that is one of the many heartbreaking parts of this story. Truly unfortunate.

SEO Powered by Platinum SEO from Techblissonline