Daniel Hauser, a 13-year-old boy with cancer, is being forced to receive treatment that both he and his parents have refused.

"It is imperative that Daniel receive the attention of an oncologist as soon as possible," wrote Brown County District Judge John R. Rodenberg in an order to "apprehend and detain....His best interests require it."

I often find myself in the minority when I argue for parental rights.  Doctors, teachers, social workers, and "concerned citizens" fret over the idea that parents should be allowed to make decisions that they believe are not in the bests interests of their children.  In one sense it's hard to blame them, as these are often people who are in a position to see better than most the consequences of physical, emotional, and educational neglect and abuse.

However, I insist that, other than in exceptional and egregious cases of insanity or malicious, criminal intent on the part of the parents, we cannot afford to entrust the care of children to anyone else, least of all a bureaucracy.  There's a quote from Rabindranath Tagore that I like:  He alone may chastise who loves.  I would also say, "He alone may decide who loves."  No one else, ultimately, can be trusted.  The judge in this case may be right, he may even be wise, but in no way can we pretend he loves Daniel.

Do I think parents make stupid mistakes?  Yes, yes, yes!  I've made enough myself.   This is where the community comes in, providing education, encouragement, and role models—but never, unless in cases of proven criminality, legal coercion.

Medical ethicists say parents generally have a legal right to make decisions for their children, but there is a limit.  "You have a right, but not an open-ended right," Arthur Caplan, director of the center for bioethics at the University of Pennsylvania, said last week. "You can't compromise the life of your child."

Sounds noble, but consider what it could lead do.  Forced Caesarean sections if a doctor thinks childbirth might be risky?   Forced sterilizations of "unfit parents"?  Court-ordered immunization of children using controversial vaccines?  Jehovah's Witnesses are already being court-ordered to compromise their children's souls through blood transfusions.  (For the record, I don't agree that blood transfusions are a spiritual danger, though they may be a physical one.  But choose your own belief—what if a court ordered you to do something you knew would harm your child?)  It means very little to me that the overwhelming majority of medical opinion be against the parents; at one point in time, the overwhelming majority of medical opinion was in favor of bloodletting as a treatment, and many patients died because of it.

If the rights and responsibilities for children are not to rest securely with the parents, where shall they lie?  Whom do you trust more than yourself to make decisions for your family?  I trust (and rely on) many sources for advice, example, and support, but none—least of all a bureaucracy—for the final decision.  Parents can and will be wrong, but they are still the best hope for children.  The argument is often made that "if one child is saved" through bureaucratic intervention, that is sufficient justification.  What this logic misses is how many children are irreparably damaged by such intervention.  First, do no harm.
Posted by sursumcorda on Wednesday, May 20, 2009 at 7:00 am | Edit
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Perhaps Arthur Caplan hasn't seen what happens when you have chemo treatments. (A certain cousin from CT used chemo as an example in response to my jest about "that which doesn't kill you makes you stronger", presumably in regards to his not wanting to eat vegetables because they might kill him).

Posted by Jon Daley on Wednesday, May 20, 2009 at 10:27 am

Another thing: The boy is not 3, but 13 years old. I wouldn't say that necessarily makes him wise—though there once were sea captains of his age winning battles—but IF, as has been ruled, girls at 13 are allowed to choose whether or not to use contraception and whether or not to have abortions, then boys at 13 should be allowed to choose whether or not to submit to chemotherapy.

Posted by SursumCorda on Wednesday, May 20, 2009 at 5:13 pm

Parents should have absolute say as to what healthcare their children consume. If you dont like a parent's decision, shun them.

Posted by Phil on Saturday, May 23, 2009 at 8:12 am

What if you can't?

Posted by Stephan on Saturday, May 23, 2009 at 8:38 am

Can't shun them? As in you're not in their neighborhood? Well then too bad for you.

Posted by Phil on Saturday, May 23, 2009 at 9:27 am

I was thinking more along the lines of a parent with whom you are forced into contact - work colleague, member of the same church, mailman, you name it.

Additionally, I was thinking of how shunning plays out once there are more people out there that you shun than people you don't shun.

And then there's a new problem in our internet age: what if the people you want to shun are your facebook friends or comment on your blog or otherwise interact with you in ways you can't stop without inconveniencing everyone else?

Posted by Stephan on Monday, May 25, 2009 at 12:52 am

Presumably you'd have already chosen to live amongst peers who share your values so that this would be a very rare need. For example, heather's community generally supports her choice to use a midwife rather than a hospital. Plus, you dont *have* to shun. It's just a better suggestion than asking the state to say "My way or jail".

Posted by Phil on Monday, May 25, 2009 at 8:55 am

By "generally supports" I hope you include the people who think I'm totally out of my mind but do have the right to make my own choices. It was only after Isaac's death that we found more people, near and far, who supported our homebirthing decision.

And by "chosen to live amongst" you don't necessarily mean the location of our house. I have no idea what our neighbors think of midwives, or much else for that matter.

Posted by joyful on Monday, May 25, 2009 at 10:14 am

By the way, if Daniel has the same health insurance we do, he is no longer covered for this cancer treatment because it was ordered by a court. So then would the state pay for it, since the state ordered it?

Posted by joyful on Monday, May 25, 2009 at 10:16 am

Now that's a wrinkle I hadn't thought of. If you talk to local governments and schools around here, they'd say no—that the state is constantly ordering them to do things for which the state provides no money.

Posted by SursumCorda on Monday, May 25, 2009 at 10:55 am

Yes, your community need not be geographically based.

Posted by Phil on Monday, May 25, 2009 at 5:44 pm

The insurance does have some odd clauses in it about not paying for things a court or employer asks you to do, unless they are deemed medically necessary by Highmark.

And also, vaccinations are only paid for if they are for the prevention of a disease. I am not quite sure what else a vaccination is for?

Posted by Jon Daley on Wednesday, May 27, 2009 at 1:22 pm
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