Tough Case: Church v State for the Life of Daniel Hauser

26 05 2009

Dana at Principled Discovery poses the Question of the Day for thinking parents religious or not: Should Daniel Hauser be allowed to reject chemo?

The specific views in this case weren’t exactly inspired by Christianity, but I guess they considered themselves Catholic as well.

. . . how much did religion really have to do with it? The family submitted to chemotherapy and rejected it only after experiencing its side effects. Perhaps religion was something to hide behind. Perhaps it was something they were driven to in their search for an alternative.

But I suppose the question remains: Is Daniel, a thirteen year old with disabilities related to a difficult delivery, capable of making this decision himself?

Further snooking around through the years:
Right Thinking About Parent Rights: Polygamy and Homeschooling

Does the state have a right to override the parental consent and intervene to prevent the child from entering into this arrangement?

Is there a legitimate state interest to protect the child?

Have the parents or the “husband” committed an act of child sexual abuse?

Is the girl competent to make her own decision in this matter?

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14 responses

26 05 2009
Crimson Wife

I feel torn in these types of cases. On the one hand, I feel that parents rather than the state should be the ones with the authority to make decisions about medical treatment for their child. On the other hand, this type of cancer has something like a 95% survival rate with chemo but will almost certainly kill him without it. As someone who is pro-life, this really disturbs me. It’s a tough call, but I’d have to say that Daniel’s right to life trumps his parents’ wishes to refuse treatment.

26 05 2009
JJ

My big stumbling block is that I am a public policy analyst. So what I might very strongly think best if I were trusted to advise a particular family on the personal level, isn’t necessarily the same thing I’d argue very strongly for as public policy in all similar cases.

I keep wondering, is there a symmetry of principle that rises above the medical specifics about the type of condition and treatment consequences?

In other words, what if it were Daniel’s own choice to reject the treatment but his parents were forcing him to have it? What if they all were set on him having a life-saving treatment he can’t afford or isn’t considered a good candidate for? Should they be able to choose it anyway?

Or what if he’s healthy, no life-threatening condition, but he and his parents unite to demand some career-enhancing choice or quality of life treatment such as cosmetic surgery for an entertainment career or steroids for sports or marijuana and cocaine for creativity, peace and energy (or glaucoma, pain treatment, religious belief?) — are public standards and laws right to prevent the exercise of such private family decisions?

26 05 2009
JJ

Oh, and let’s not forget vaccinations as both family and public policy. That was in the news again this morning on the radio as I woke up:

Over the past 10 years, a highly contagious and sometimes fatal bacterial disease once thought eradicated from the U.S. has re-emerged, threatening the very youngest and weakest of our population. . .

Vaccines in this country are very safe, he adds; they “prevent diseases that can maim and kill.”

And from Reuters today:
“CHICAGO, May 26 (Reuters) – One in 20 children whose parents do not get them vaccinated against whooping cough catch the highly contagious virus, researchers said on Tuesday.”

26 05 2009
Crimson Wife

What if it were Daniel’s own choice to reject the treatment but his parents were forcing him to have it?

Daniel’s a minor so I don’t believe he has the right to go against his parents’ wishes UNLESS he could convince a court that doing so would likely save his life. I don’t believe parents have the right to take an action that would very likely result in the death of the child- either before birth (i.e. an abortion) or after birth (such as rejecting chemotherapy for a highly curable cancer). The child’s right to life trumps the parents’ authority to make decisions for the child.

What if they all were set on him having a life-saving treatment he can’t afford? Should they be able to choose it anyway?

No one should be denied a treatment likely to save his/her life based on ability to pay. I’d personally be willing to pay a junk food tax in order for the government to help out low-to-moderate income folks who cannot afford lifesaving treatments.

26 05 2009
JJ

You’d support a single-payer health care system on that principle then?

26 05 2009
JJ

And would that lead you to be against all forms of euthanasia or DNR directive, even if desired by the individual child (minor or not) and approved by the parents (thinking of Terri Schiavo e.g.) ?

26 05 2009
Crimson Wife

A DNR order is different than euthanasia. That’s allowing for a person to die a natural death. In a case like Mrs. Schiavo’s, it would be inhumane IMHO to resuscitate her had she experienced cardiac arrest. But the controversy wasn’t over a DNR order but rather whether she could be legally starved to death.

26 05 2009
Nance Confer

CW: As someone who is pro-life, this really disturbs me. It’s a tough call, but I’d have to say that Daniel’s right to life trumps his parents’ wishes to refuse treatment.

*********

At least this is consistent. I disagree about the abortion implications but at least this argument is seeking to be consistent.

Nance

26 05 2009
JJ

Don’t see any such distinction without a difference helps, even if it were the whole truth. It was legal but there was nothing natural about the way Terri Schiavo was starving herself in the first place, which is how she wound up in an irreversible coma. (Should the State have acted to force feed her back then, before the coma, at her parents’ demand? It may well have saved her physical life but that’s not the whole story either, is it?)

Sex and learning (and eating) are natural, but the marriage and education and hunting/labeling/restaurant regulation laws we try to control them with? — not so much. Parenting in family groups is natural but the things some parents do to their children are monstrously unnatural (see Dana’s latest link e.g.) And a court order following due process and exhausting all appeals over many years is different than murder. And public policy and politics are (certainly ought to be) different than private religious belief and practice.

26 05 2009
JJ

Reason Magazine:

Science should trump belief. Except when it doesn’t.

. . .In other words, policies governing how and when we give sick people access to the medication that could mitigate their pain, ameliorate the side effects of their treatment, or even save their lives, aren’t based on compassion, individual rights, or even an honest assessment of science and risk. Instead, we have a patchwork of laws and enforcement policies driven by decades-old drug war hysteria, pharmaceutical paranoia, irrational aversion to risk, bureaucratic turf wars, and, of course, politics.

All of which means that you don’t really have much say about what drugs you put into your body, whether you’re seeking to alter your state of mind, dull excruciating pain so you can function day to day, or even to prolong (or, for that matter, to end) your life.

These decisions are far too important to let individuals make for themselves. Better that someone like Tim Pawlenty make the decision for them.

27 05 2009
Dana

For me, what complicates this is his age, his apparent lack of understanding of what is going on and this bizarre religious group advising him…or taking his parents’ money as the case may be.

When my eldest was four, she would put up a fight like you wouldn’t believe over taking medicine. But as a loving mother who knew the bitter taste wasn’t going to hurt her and that the medication was going to help her, I made her take it. Now she is ten and on daily medications. During flare ups, she is on meds that taste very bad.

But now she is old enough that after we and the doctor explained what was wrong and what the medication was for, she takes it without complaint. She makes all sorts of faces, but even without me telling her to, she takes her meds at the prescribed time.

I don’t know that I would completely give her the choice to accept or reject chemo…I suppose in my mind I still count someone as “old enough” and “rational enough” when they make the same decision as I would.

She’s ten. A thirteen year old may have a little more sense…but you have a certain sense of invincibility as a child and I don’t know that at that age you have a full understanding of the death the silent and invisible cancer is bringing you whereas you are very much aware of the side effects of chemotherapy.

But then there is this disability issue. And that raises even more questions for me. I was thinking about a case in Canada some time ago in which mentally retarded women were forcibly sterilized. How do we treat those with mental disabilities? How do you determine when they are able to give consent and when their wishes should be honored the same as we would honor any other person making a similar decision? How do you explain what is going on? Maybe all the family needed from the beginning was doctors with good communication skills and a lot of patience.

And then the religion thing. If they sounded like they knew at all what they were talking about, were cognizant of the risks and benefits of the course they were taking and not as if they had been taken in by yet another scam, perhaps my feelings also would be a bit different.

27 05 2009
lori

“this bizarre religious group advising him…or taking his parents’ money as the case may be”

And…

“And then the religion thing. If they sounded like they knew at all what they were talking about, were cognizant of the risks and benefits of the course they were taking and not as if they had been taken in by yet another scam, perhaps my feelings also would be a bit different.”

No offense, but, who gets to decide which religious groups are bizarre, money-grubbing, hucksters and which ones aren’t? I mean this honestly: to some folks, all religious belief is superstition and all religious groups trick their followers into emptying their wallets. So who gets to decide which ones are “irrrational” and predatory bunk, and which ones are a-okay? ‘Cause of some folks can’t understand how some beliefs in the supernatural are considered legitimate and reasonable and some aren’t.

27 05 2009
Nance Confer

If there are more of you, your religion wins.

Nance

27 05 2009
JJ Ross

By everything she just said, I think Dana and I think alike — not necessarily what we think but how we think, I mean. Take her disarming acknowledgment that on one level she tends to define who’s mature and rational by on her own mind as the standard, so people who agree with her naturally seem mature and rational! Same here. 😉

And this:
“Maybe all the family needed from the beginning was doctors with good communication skills and a lot of patience.”

Yes!
But too often families are too far gone for any professional to reach them.
And the burden/blame falls not just on medical doctors imo. There’s a common social pathology in the toughest cases we all need to own and address. Dorner’s Logic of Failure. We all need to do better, understand and think better, problem-solve better, communicate with each other better. “We” meaning as individuals and we the people too, our institutions and collective consciousness, because individual doctors aren’t the whole answer any more than individual teachers are the whole answer to public education transformation.

How about public schools and discourse and a whole culture that is more mature and more rational, progressing beyond the adversarial model for resolving our differences? Might makes right is wrong. America has taken warring camps to destructive extremes not just in the courts but in legislation and campaigning, corporate warfare and labor relations, media coverage and diplomacy (e.g. the SCOTUS confirmation process!) The adversarial model can go to bizarre and dangerous extremes even in actual war; there lies torture and tyranny.

Which brings us to the disability issue. Mrs. C. writes heartbreakingly about school personnel using the adversarial approach against her sweet young autistic son. They may just be trying to do their jobs and bear him no ill will, but that’s child abuse. And like all child abuse, it comes from toxic and complex combinations: bad thinking, bad feeling, bad beliefs, bad situations.

Finally, it’s so refreshing to read that Dana can see and share (and not pretend otherwise) the concern Lori and Nance express over the real-world harm of predatory bunk packaged as religious faith. It kills kids too, just like cancer.

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