When the "Best Interest" Isn't Good Enough: Daniel Hauser and Medical Ethics

Last week, life was complicated enough for poor Daniel Hauser.  He was a 13-year old kid with Hodginks Lymphoma, stuck at the center of a heated court case. At issue: could his parents refuse chemotherapy and radiation in favor of nutritional supplements?

Now he's still all those things, plus a hostage—or a fugitive, depending on how much autonomy one gives a sick teenager. Either way, Daniel Hauser is dealing with a lot more stress then your average 13-year-old cancer patient should have to endure.

On Friday, young Daniel vowed to fight any attempts at treatment after the judge ruled that Hauser would have to resume a more western, aggressive approach to treating his disease. (Listen, while I love my morning multivitamin, I won't count on it to zap any tumors should the need arise.)  Today, after Hauser didn't show up for the scheduled chest X-ray—required to show how much the totally treatable cancer had spread while this issue was tied up in court—his father announced that Daniel's mother had absconded with the boy to destinations unknown.

Yikes. There are obviously a lot of issues in play here, but one of the largest is the rights and responsibilities of parents to make medical decisions for their children. What obligations do they have to their doctors, their children, and their faith?  Today I did my best to give some perspective to these questions—questions that could be addressed at great length on an entire blog devoted to just this topic—in a piece for NEWSWEEK.COM:

When thinking about cases like this, the basic standard is not simply "What's in the best interest of the child," but rather, "Will the refusal of the treatment cause harm to the child?" The phrase "best interest" can be interpreted in different ways. "If it's a Jehovah's Witness who doesn't want their child to go to hell for getting a blood transfusion, their belief system tells them it's not in their child's best interest to get it," explains Diekema.

For that Jehovah's Witness, of course, damning a child to eternal hellfire seems a lot more harmful then denying her a treatment to save her physical body.

Even in an extreme case like this, literally a matter of life and death, there's no clear consensus on what it means to "do the right thing." Almost 40 percent of respondents in an MSNBC.com poll said that parents should have complete control over their kids medical care (though that number is in flux; the poll is constantly updating).  No wonder there's so much debate about issues with even more ambiguity: should parents be forced to vaccinate their kids for measles? What about HPV? And how do you feel about the other side of this ethical coin—parents trying to force doctors to perform unnecessary surgery, like leg-lengthening or breast reductions, on children under 18? And who gets to decide what's unnecessary (remember the Pillow Angel case)?

I have a feeling this won't be the last time these issues come up ("My Sister's Keeper" opens June 26th!) but I'm curious: who do you think should have the final say in a kid's medical care? Are there certain covenants—to faith, family or to the public health—that should never be broken? Do you disagree with the Hausers, but support their right to do what they think best for their son—even if it kills him?