Medical Neglect
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.
“(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.
This is so pathetic – and the kid, who wouldn’t know better, had been fed a cartload of bullshit. As for “natural” therapies, if radiation therapy is on the list, that’s 100% natural; humans only do a little work to ensure that the natural products of naturally occurring nuclear reactions come out fairly pure and suitable for its intended use. Chemotherapy is a different matter though; many of the chemicals are synthesized – but they’re all made from naturally occurring chemicals so you might classify them as natural as well – they’re certainly not supernatural chemicals.
A column in the StarTribune newspaper this weekend actually claimed the kid can’t even read, much less understand the document he signed:
“Not only could Daniel neither read nor understand the affidavit he signed saying he preferred “native” treatments over chemotherapy for his Hodgkin’s lymphoma, but he also could not read. Period. When tested by his teacher for entrance into a charter school, according to court documents, Daniel, who had been home-schooled, could not identify the following word:
“The.” ”
http://www.startribune.com/local/45190127.html?elr=KArksUUUU
The columnist goes on to say:
“Daniel testified his mother told him he had become a medicine man, but only after his first chemo treatment. Turns out everyone in the church becomes a medicine man automatically at 13. I’m guessing fees are involved. But Daniel couldn’t explain the term, nor could he describe basic church doctrine, according to court documents.
This story ran late last week in the online edition of The Arizona Republic, and was followed by reader comments. The majority of the commenters seemed to feel that this ruling was a terrible blow to family and religious freedom, and was another example of heartless lawyers and activist judges working to advance their godless agenda.
Are Daniel’s parents competent adults? Should the state protect them from themselves as well?
According to the AP story, “Doctors have said Daniel’s cancer had up to a 90 percent chance of being cured with chemotherapy and radiation. Without those treatments, doctors said his chances of survival are 5 percent.”
Were they exaggerating?
Or were his doctors estimating his chances based on his individual case situation compared to the average and their experience? But does it really matter? -His survival chances are vastly improved with treatment with either estimate
What’s worse? Quackery posing as religion or as science?
Religion is quackery, so quackery posing as science would be worse.
Re: the term “natural”. It’s such an ambiguous term, in the sense that people seem to use different definitions of it. In some fundamental sense, everything that exists is ‘natural’ because it is not ‘supernatural’.
Even though these people are religious and believe in God, they still ought to accept medicine: everything that is not supernatural is natural, all modern medicine and pharmaceutical science is perfectly natural, therefore the ought to accept treatment!
Look up “artificial”.
Clearly that is why I said “in some fundamental sense”. Because, in some fundamental sense, everything that is ‘artificial’ (which just means constructed by humans), is natural.
We’re really just arguing about levels of intervention by humans, which is a sliding scale. ‘Organically grown’ herbs are at one end, and pharmaceutical science is at the other extreme. GM crops are somewhere in the middle.
The ambiguity of ‘natural’ arises because sometimes it is contrasted with ‘artificial’ and sometimes with ‘supernatural’, ‘non-corporeal’, etc.
Agreed on the ‘natural’/’artificial’ sliding scale. I’m sure there would be those who’d claim even the ‘organically grown’ herbs would count as artificial because they were sown as ‘unnatural’ monocultures, rather than harvested from the wild, presumably imbuing them with some additional ‘natural’ essence. Free range herbs!
So your argument is that anyone who accepts the natural end of the sliding scale must also accept the artificial end of the scale, because in some fundamental sense it’s all natural?
That’s like saying that if you accept killing embryos for research, you must accept killing adults for research, because in some fundamental sense they’re all humans.
“So your argument is that anyone who accepts the natural end of the sliding scale must also accept the artificial end of the scale, because in some fundamental sense it’s all natural?”
Yes.
“That’s like saying that if you accept killing embryos for research, you must accept killing adults for research, because in some fundamental sense they’re all humans.”
In fact, the difference between an embryo and a human adult is also a sliding scale. This is the problem for abortion: there is no obvious cut off point between the embryo and the baby — it’s a sliding scale.
But that does not mean that if I am in favour of abortion I am in favour of infanticide (but it could mean that). Nor if I am in favour of infanticide must I also support euthanasia (but it could mean that). That’s just what a sliding scale is: committing to one does not necessitate commitment to the other.
The most promising approach for such ethical questions (and the natural/artifical distinction) is to set yourself a threshold limit. You accept something as being ‘natural’ if X < 5, where X is the level of human intervention on the sliding scale.
My point was not that everything is *equally* natural, but that because of the sliding scale, there is no obvious cut off point, so in some fundamental sense you could legitimately call everything natural (and indeed it is). Besides which, the “!” in my original point was intended to convey a subtle humour in my word-play on ‘natural’, which you either missed or chose to ignore!
I have to agree, can’t science and what we learn from it be seen as a gift from god?
This is exactly what some parents of multiple fetuses due to artificial insemination argue when rejecting the option of reducing the number of fetuses. They regard the dangers inherent in this as God’s will.
Now if this were Babylon 5, the parents would take the cured child, now minus a soul in their opinion, and kill him.
Max: I certainly hope that the kid’s doctors do “know the clinical details of this case” and thus are able to make an individualized estimate of his odds rather than using the average 78%.
Yeah, they might have said 90% because his cancer responded to the first dose of chemo.
Steven
From the New York Times “Trials for Parents Who Chose Faith Over Medicine,” 20 January 2009:
. . . had grown so weak that she could not walk or speak. Her parents, who believe that God alone has the ability to heal the sick, prayed for her recovery but did not take her to a doctor.
. . .
The Judge’s ruling :
The free exercise clause of the First Amendment protects religious belief but not necessarily conduct.
I agree the judge should decide for Daniel because he is a minor. But in my country consensual sex between an adult and a minor (below 18) is a crime of rape. The minor cannot give consent because she’s not old enough to decide for herself. Even at 16?! Is that fair?! So much for my right to liberty and pursuit of happiness!
That’s retarded.
Your saying that you have no right to liberty and the pursuit of happiness because you can’t have sex at 12 years old?
I’m 16 not 12. You’re so repressive!
This is the grandparent’s curse:
May you have children just like yourself!
Trust me, you will understand this within three or four decades.
Well, that discussion went off into left field fast.
This is a commonn dilemna and as Steven says it is a well worn path. The test of whether a legal minor should be able to give/refuse consent should not be chronologically determined but judged on his/her ability to understand the issues – the judge (who should be an expert in making these decisions) clearly found Daniel unable to make a competent decision and therefore the state had a duty to protect him. Often minors do understand a lot about their illness and wish to be involved in decisions about their treatment – but I suspect such cases rarely end up in the courts.
The counterpoint to this dilemna is that of the adult who is unable to make decisions for himself because of mental disability or illness. Fortunately in the UK. a recent Act of Pariament has clarified the position and made it much easier to deal with. Similarly the decision in the Gillick case (about minors going on the pill) helped resolve some of the issues with minors and giving consent.
Daniel’s mother is delusional about Daniel’s health, and chances are she’s just as delusional about her own health. If she ever refuses medical treatment for a curable disease, should the state make the decision for her?
I think a good way to sum up the notion of competence is this:
Adults are assumed to be competent to make decisions for themselves until a judge determines that they are not, while minors are assumed not to be competent to make decisions for themselves until a judge determines that they are.
If we have to rely on judges to make decisions on a minor’s competence then the courts will be overwhelmed! I think we have to finesse Steven’s summing up. Whilst the definition of legal competence is age defined clearly a child of 15 years and 364 days does not suddenly acquired full competence a day later! (assuming 16 years is the legal age) In practice the children acquire competence gradually and at different rates – there is useful guidance from the courts about this but clearly if Drs, parents and child cannot agree the judge decides.
“minors are assumed not to be competent to make decisions for themselves until a judge determines that they are.” That is repressive and discriminatory. A 20-yr. old guy can’t have a normal relationship with 16-yr. old girl. He has to ask the judge first lest he be accused of rape.
Umm, don’t overlook the Dawin effect. On an individual basis it’s unfortunate/tragic, but for the species….
Eh? Just point me to the paragraph in the constitution that gives the state this ‘right’. The state gets all its powers from the people, and the last time I checked I can’t come into your home and force you not to smoke, or force you to live healthy for that matter.
Why don’t you just forcefully remove all ‘native’ children from their parents so that you can teach them to read and educate them to the wonders of modern medicine. Clearly people far more enlightened then you have accomplished this successfully.
And how about forcing pregnant women with genetic defects to get abortions? Clearly they aren’t capable of making informed decisions if they want to give birth to a child they are certain will suffer from some horrid disease. We shouldn’t ever permit people to live their lives without our consent.
The U.S. Constitution?
10th Amendment
Or did you mean the Minnesota constitution?
Was that your attempt at making a point? Which point exactly?
I gave you the paragraph in the U.S. Constitution that gives states the “right” to do whatever they’re not prohibited from doing. Now you point me to the paragraph that prohibits states from protecting children.
Oh dang, they fled!
http://www.foxnews.com/story/0,2933,520690,00.html
“Colleen Hauser and her son, Daniel, who has Hodgkin’s lymphoma, apparently left their southern Minnesota home sometime after a Monday doctor’s appointment and X-ray showed his tumor had grown.
Brown County District Judge John Rodenberg issued an arrest warrant Tuesday for Colleen Hauser and ruled her in contempt of court. Rodenberg also ordered that Daniel be placed in foster care and immediately evaluated by a cancer specialist for treatment.”
I see several issues with this report
1) you cited an Australian girl who died from infections due to severe eczema. The parents used homeopathy instead of modern allopathic medicine. The problem here is THERE IS NO CURE FOR ECZEMA, homeopathic, allopathic or other. I know this because I suffer from eczema also.
2)Wouldn’t belief in a religious or spiritual healing be the same or at least very similar to the placebo effect which doctors are legally allowed to use?
3) as far as the constitution, is Daniel a native American? If so, does our constitution even apply to him?
4) if the medicinal cure has a potential for failure shouldn’t a parent have a right to refuse it? Childhood Hodgkins lymphoma survival is only 78%. That is only for 5 year survival. What about the 22% who will die regardless or possibly because of this treatment? What about after the 5 years? What is the survival rate then?
The argument would be much stronger if the disease could be 100% treatable, but it is not. I’m not aware of any disease that is 100% treatable.
So why should the government be able to override a parents decision if they can’t guarantee the treatments will work?
Isn’t that the same standard the government wants for these alternative treatments? Actual proof they work?
Even at a mere 5% survival rate, if the child survives, that is better than the 22% guaranteed to die with the modern therapy. There is no way to tell exactly for whom the treatments will work.
5) What are the parents motivation? To obey their religious belief, to heal their son, or to defy the government?
Hopefully someday our medicine will be more efficient but until then it seems wrong to me to force parents to have procedures done on their children that may harm them. If the parents do nothing their son has a 5% chance of survival. If they take the recommended therapies their son will have a 78% chance of living for 5 more years. If he is spiritually healed he may survive to become an old man. Or he may die. Should this not be a choice for the parents?
Apparently it’s legal for adults to give their life for their religious beliefs but not their children.
So in the end the real question is this, Who owns Daniel? The state? The federal government? His parents? The tribe? His god? How about Daniel himself?
I do not believe a satisfactory solution can be found. I know if I were in Daniels shoes I would want the right to make that decision.
1) There’s no cure, but there’s a treatment that would’ve KEPT HER ALIVE. Same as for asthma and diabetes.
2) No placebo effect would increase Daniel’s chance of survival from 5% to 90% (Daniel’s prognosis), and in fact his cancer was found to be growing without chemo.
3) I don’t think the family is Native American.
4) YOUR argument would be much stronger if chemotherapy increased Daniel’s chance of survival from 5% to 7%, rather than to 90%.
5) They may have a good motivation, “But parents are not generally allowed to refuse standard medical care for their children, regardless of the reason. This is considered criminal neglect.” -Steven Novella
Nice points Max, I know of one young man who survived this disease, discovered when he was 11 years of age, so I know this disease CAN be cured with modern medicine, unfortunately it doesn’t work for everyone. So, for those who this treatment doesn’t work for they are guaranteed to die. Death is the natural course of this terrible disease, anything that works should be considered.
I would feel more comfortable about the government forcing these procedures if Daniel objected to his parents, but since this is not a public health issue and the affected person is in agreement with the current treatment (or lack thereof), I feel forcing treatment on him would cross the line of a persons right to raise their children the way they see fit. It also raises a problem with Daniels personal rights. He may later regret his decision if his condition gets worse, but he also may become emotionally troubled if the procedure is forced on him, he survives but is not ever in a healthy state again. Death may be preferable in his perspective.
This potentially could open pandoras box of forced medical procedures. A very slippery slope.
My best to Daniel regardless of the decisions made by or for him. Let’s hope for a complete recovery.
This legal definition of competence at 16 or 18 is ridiculous. A 13-yr. old girl who doesn’t know what sex is is retarded. Normal teenage girls know and are competent to decide for themselves. Teach sex education in sixth grade so everybody will be competent. Maybe government is concerned with morality not competence. That’s our responsibility. Government should not play parent to teenagers. My personal life is none of its business!
There is emotional baggage that goes hand in hand with sex. This is not something that is part of the regular sex education curriculum, but it does exist. Unfortunately this is not part of any sex-ed curriculum.
I am what you would call an old person in that I have lived over half a century (plus a full grown nerd, married to a nerd with wonderfully nerdy children, including the boy who wanted to go to half way around the world to meet a World of Warcraft player of the opposite sex). I was a naive thirteen year old being shocked that one of girls in my gym class in 8th grade was going to get married to the father of her baby as soon as summer started. This did not fit in my world of hanging out with friends, and going to movies… which was kind of paid for by occasional babysitting jobs. I mean, why would one want to end up babysitting for real one’s own kids without any kind of pay?
Oh my word! Who wants to give up hanging out with friends, going camping (which is just really fun place to hang out with friends if you don’t mind not having a shower and sleeping in the great outdoors), sleeping in on weekends, or going to movies to take care of a needy boyfriend or a baby?
Also, before my oldest started high school one of their football players was murdered due to the fact he had sex with another idiot football player’s girlfriend. Yeah, emotions and sex seem to get muddled together, and often not in a good way!
Sure, in health class they teach about some of the consequences of sex like diseases and pregnancy, but they never mention the emotional toll it takes on the teenage mind. Yeah, you may think it is trivial now, but just you wait a decade or two, and you will see how important it is!
Of course, you will ignore a random post on “teh interwebs”, but in due course reality will have its way with you… and you are the only one who can determine the outcome.
So good luck in your hormone driven desire to grow up and take on all the responsibilities that are part of adulthood. I hope you carry them well, and do not regret any loss of childhood!
You sound like my grandma. Yes grandma, I’ll be a good girl like Vanessa Hudgens.
Who is Vanessa Hudgens?
Anyway, I think I would like your grandmother.
Your comments here reveal a level of maturity, and no, that is not a compliment. Note, I did not say you could not have sex, I said that you more may not understand all the consequences.
Please do keep safe.
Very funny. You don’t know Vanessa Hudgens because you don’t watch Disney Channel. I do. No wonder older people are so out of touch with teens. She is idolized by millions of girls worldwide. And do you know Avril Lavigne won the Teen’s Choice Award? Not only that, she also won the Kid’s Choice Award (for children under 12). These awards were selected by popular votes of teens and kids worldwide.
I may seem irreverent to older people but I’m more modest than nudist Vanessa and I’m more polite than foul-mouthed and flirty Avril. If you don’t know who Vanessa and Avril are, that’s how big the generation gap is!
Editing fail: I meant to say “that you may not understand all the consequences.”
Sweet 16, Disney Channel and nudity don’t go together. What are you talking about?
LOL! Vanessa is Cinderella in Disney Channel and Playboy bunny in the internet. A lot of girls are like that. Their parents think they’re good girls and they are. But they can be wild sometimes. And their girlfriends know all the shit that they do. Like he’s fun but the handcuff was disgusting. I always hear that. As if condom and handcuff go together. LOL
Sweet 16, if you’re still watching cartoons, you’re too immature to play adult. You’re a child in a woman’s body.
What’s wrong if I still watch cartoons and wear pigtails in school? I’m popular with older boys (20’s) but they’re horny. One wanted to take pictures of me. Hell no! I’m not a porn model. Another had this gadget. It’s so big!! I told him, stick it up your ass you’re not gonna put that in me! Boys keep asking me out. I think I’ll just stay home and watch cartoons.
Sweet 16, you’re not sweet at all. You’re perverted.
Well I’m sweeter than other girls. I don’t use handcuff. I’m shy. I don’t wanna be shaved like a beaver. LOL
Sweet 16, you’re not funny. This is not soft porn blog.
Hey, is Chris Hansen lurking around out there somewhere?
Sorry I guess I’m too flirty for adults. I better chat with kids. They might find me funny. I mean they love Avril Lavigne.
You’re old enough to decide for yourself. If you won’t abstain, practice safe sex and avoid multiple partners. Be careful. Refrain from using videocam, handcuff and unsafe gadgets. Be a good girl.
Multiple partners? Videocam? Handcuff? Gadgets? That’s scary. Okay I’ll tell my boyfriend to be careful and don’t invite other girls.
Sweet 16, your argument may be valid, but it is a non sequitur — in this particular chain of comments, and especially in regard to the post that leads them, your argument, as stated, is irrelevant. Please look for non sequitur in a good dictionary.
See Mike’s comment about the Gillick case, the use of contraceptives by minors. If minors are deemed competent to use contraceptives, they are deemed competent to give sexual consent. How can they use contraceptives without sex? But let’s stick to medical treatments (contraceptives) because sex is taboo. Some adults are uncomfortable talking to teens about this subject. Yeah Pope Benedict doesn’t really want to chat with Miley Cyrus.
I didn’t know what the word vagina meant until I was 16. Does that make me retarded or is that the result of religious based isolation from society? (hint: not retarded).
Oh, you said NORMAL. Never mind! :P
Do you think that 13 year old girls should be able to smoke cigarettes and drink alcohol?
13 yr. old girls shouldn’t smoke and drink (I don’t smoke) but they do anyway. Maybe they will stop when adults stop doing it. Why prohibit it to minors? Prohibit it to everybody.
He won’t be competent after he dies needlessly.
There’s a Russian expression for exceptionally stupid and stubborn people: “Sick and not getting treated.”
Sadly, this tragic sort of ignorance goes-on around the globe.
Check-Out:
http://canterburyatheists.blogspot.com/2009/02/new-zealand-children-who-died-for-their.html
Ta.
Paul
It’s worth noting that the parents are not Native American. Frankly, despite their claims, I’m not convinced they truly subscribe to Nemenhah — because they’re actually Catholic, according to local media. Is it possible they’re just using Nemenhah as a cover for their CAM beliefs?