From commenter JK comes a link to a story about a young girl with juvenile diabetes who died because her parents, besotted by delusional religious fantasies, saw fit only to pray for her, rather than seek simple and effective medical treatment. We read:
Last Easter Sunday, 11-year-old Kara Neumann of Weston, Wisconsin, lay motionless on her bed, too weak to walk or speak. If her parents had called the hospital that day, Kara might have lived. Instead, Dale and Leilani””followers of the Unleavened Bread Ministry, an online church that shuns medical intervention””knelt in prayer beside her. Kara died a few hours later of diabetic ketoacidosis, a result of undiagnosed and untreated juvenile diabetes.
Her parents are now facing criminal charges, as they should. But according to this article, it seems the law is on their side:
“We are not commanded in scripture to send people to the doctor,” Unleavened Bread Ministries preacher David Eells said in a statement to his followers, “but to meet their needs through prayer and faith.” Under current Wisconsin law, his followers aren’t commanded by the state, either. Part of the legacy of the 1996 Child Abuse Prevention and Treatment Act, which included a landmark exemption for parents who do not seek medical care for their children for religious purposes, is that parents cannot be accused of child abuse or negligent homicide if they genuinely believed that calling God, instead of a doctor, was the best option available.
This is not only insane, it is patently unfair. Why should this exemption — to be allowed to watch your innocent and helpless child die before your eyes of an easily curable disease as a direct result of your demented worldview — be granted only to the religious? What about crackpot inventors or dietary quacks, for example? If I’m allowed to withhold medical treatment in favor of prayers to Jesus, why not magnetic waves or plankton smoothies?
The larger question, of course, is what role the State should play in protecting children. Are our offspring are simply chattel until majority, for parents to deal with as they like? In what practical way is refusing medical treatment to gravely ill children any different from starving them to death? The result is the same.
Obviously the State does take an interest in defending children from abusive parents; indeed, if it gets around that you’ve been spanking them when they misbehave, you might soon find yourself in very hot water. But so convinced are we in this country of the overriding value and importance of religious belief — no matter how idiotic or destructive — that to condemn our children to death in the name of the Lord is simply our God-given right. This is America, after all.
You can read this unspeakably depressing story here.
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Most depressing is the fact that I read the first line of this post and thought, “Oh, this is old news.” And then I realized that it wasn’t, and this sort of thing happens with alarming frequency.
In other news, if I ever have children, I will immediately be founding a new religion: the Church of the Rod. Our sole tenet will be the belief that misbehaving children are possessed by evil spirits who take up residence in the rear end, and the only way to drive them out is with judicious and sudden application of force.
Well, Wisconsin statute doesn’t seem very helpful (or hopeful) in this regard. Perhaps the Wisconsin legislature should look to near neighbor Minnesota for guidance.
http://www.msnbc.msn.com/id/30763438/
Thanks, JK, for the link; this story is more along the “plankton smoothie” line.
It appears the boy will die without chemotherapy, and would likely be saved by it. He’s 13. What is the State’s proper role here?
The State, it would seem, has a duty to protect children. Were I the Judge, I would order mandatory treatment (for the child).
I might order the parents into treatment too, but that regimen would not consist of anything resembling chemo.
I’m pretty close to the “Minnesota case”, so I can’t say a whole lot.
I think the Judge made the right ruling in this particular case, because this particular 13-year-old isn’t able to articulate anything like a “rational explanation” for his position. Also, his “religious” objections to chemotherapy only surfaced after he had gone through one round of chemo, with predictable misery inducing side effects. However, there certainly are 13-year-olds who can “argue their case” for rejecting treatment as well as, if not better than, a large number of people who have attained the “age of majority.” In such cases, the law should protect their “right” to refuse treatment.
I think another problem in this case is the phony “Native American” Nemenhah sect, which I view as nothing but a creative use of badly framed laws to orchestrate a tax dodge…
Bob, I’m with you on the “Nemenhah” crap. it does stress “ancient native American healthcare practices” but I note the mother while using what I expect, that being “herbal” stuff, I also note ionized water and vitamin supplements.
I know native Americans have a fondness for gambling (living near some casinos) and I know about stuff like peyote. But I don’t recall reading in school that tribal Walgreen’s vitamin dispensaries were part of any happy hunting grounds.
That’s an interesting notion, Bob: to determine legal majority not by age but by apparent competence.
I wonder about that. Often one aspect of a pubescent child’s development gets out in front of others, and such a person might give the impression he is more competent than he really is.
It’s pretty widely accepted that when it comes to health care decisions, the “legal age of majority” should be viewed as _just_ a “rule of thumb” which should be set aside if an adolescent can demonstrate the capacity to make an informed choice in the case at hand. That’s why the judge in this case interviewed the 13-year-old privately — to sound out the basis of his “objections” to chemotherapy. In this case, he decided the kid was “in a fog” and not able to make this decision on his own.
Excellent post. No 13 year old child has enough experience or wisdom to make a decision regarding life and death. That’s why they can’t vote. I was the smartest 13 year old you ever saw; I even read Sartre. But in terms of decision making, a complete idiot.
Religious freedom ends where someone else’s freedom and/or safety is involved.
No Sister Wolf.
You were the second smartest 13 year old. (Although I would admit – you very likely had qualifications I lacked.)
No Sister Wolf.
Some 13-year-olds do have the experience and wisdom to make life and death decisions. Indeed, it’s only because we’re fortunate enough to live in a time and place where such decisions only press occasionally that we have the luxury of relieving most 13-year-olds of such a burden.
Well, speaking for myself, I was an enormously precocious kid, and at 13 gave a very comvincing impression of being far older and wiser than my years. This was a deceptive faÁ§ade, though — actually I was, at the time, as selfish, foolish, and impulsive as any other pubescent boy.
The standards for competence/capacity in medical decision-making are not particularly restrictive. Materially, we require little more than that a person doesn’t adopt premises that are “demonstrably false.” Formally, we require that the inferences they make starting from those premises are not “obviously fallacious.” And even these weak constraints are only applied within the narrow scope of the decision at hand. No “generalized” intelligence or competency is required.
Perhaps these standards should be made more stringent, but that’s a hard case to make unless we’re going to deny a great many people the “right to refuse” unwanted medical interventions.
Bob Koepp, as I like to say to my husband after he makes a preposterous statement beginning with the words “Most people…” : re the 13 year olds with the wisdom and experience, Name them! Who are they?
Sister Wolf – Who are they? I invite you to visit the pediatric cancer clinic where I work, and you might meet them yourself.
No naming of names… but consider a 12 -year-old who has spent about half her short life battling a brain tumor. She’s now dealing with a second recurrence (most people don’t survive a first recurrence of this sort of tumor). She knows more about surgery, chemotherapy, radiation, rehab … you name it … than the vast majority of so-called adults. She doesn’t want to spend what she understands will likely be the last few months of her life incapacitated by the side effects of one more experimental treatment that her doctors think might extend her life by 6 months. Her biggest worry is that she will disappoint her father, a “never say die” sort of guy. But in her wisdom, she knows that dad is in denial, and fighting his own demons. This 12-year-old sage takes upon herself the burden of counseling her father, helping him to come to terms with impermanence.
Need I say more?
Bob Koepp – This is a heartbreaking situation. I see that children are indeed able to distinguish pain and suffering from physical and emotional comfort. The fact that this child worries about her father more than herself is a tribute to her big heart and her character.
But it doesn’t mean that 12 year old children are able to make decisions with the same foresight that experience provides.
As a former 12 year old and the mother of two sons whose decisions have been alarming if not deadly, I haven’t changed my mind after reading your story, but my heart goes out to all suffering children and their parents. And to you for the work you do.