wednes: (Default)
wednes ([personal profile] wednes) wrote2009-05-21 09:55 am
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Work, and that kid with cancer.

I'm working a short shift today. It's our slow time of year, so I'm working less than usual. Not really ideal from a financial standpoint, but completely swellenor (of Ellenor "gee I think you're swellenor" fame) from a finishing-my-novel standpoint. Got a bit of editing and polishing done yesterday, but not much actual writing. Going to work on it some more today and tomorrow...and probably all weekend since I'm going to have a few days to myself. We get Monday off for Memorial Day, which is neat. I've worked retail for most of my life, so it's still a little surprising when I get a bank holiday off of work. Plus, I'm going on a writing weekend with [livejournal.com profile] absinthofheart in June, (right before my deadline is up) so I'm starting to save up money for it now.

I'm sure by now you've all heard about the little boy with cancer whose parents are refusing the prescribed medical treatment. A judge ordered them to get the kid some chemo (he has some kind of treatable lymphoma), so the mom took the kid and split. According to the kid, he doesn't want the chemo either. They beleive in prayer and natural medicine.
Most of what people have been saying about this summs up as Well, I think parents should be the final authority on their kids--within reason. And then they go on to say how sad and irresponsible it is not to get the kid chemo, how "stupid" natural medicines are, and how the kid shouldn't have to suffer because the parents are "religious nuts." What they seem to mean is Parents should be the final authority, until they choose to do something I wouldn't do.
Of course we should protect kids from abuse. Of course it is sad when a little kid has cancer. Of course most people will want to do what their doctor prescribes...or do they? I certainly don't follow all of my doctors advice--as is my right. But they're choosing for a CHILD people say Parents have a responsibility to do what's "right". Right, of course, being completely subjective.
For a long time, the prescribed treatment for mental illness was electroshock therapy. Basically, they hook you up to a machine and shock your brain a la One Flew Over the Cukoos Nest. When people refused this treatment, they were often threatened with involuntary committment even if they were not violent. After all, it could be "proven" that this treatment could bring good results, so anyone who doesn't want it is a crazy fool, right?
I've never had chemo, but I hear tell it's fucking terrible. It makes you sick, you lose your hair, your appetite, you're weak and dizzy. So what? people say, If it helps you live, it's worth it! Well that, my friends, is in the eye of the beholder. No court in the world should have the right to make me hook my kid up to a machine and get radiation all over him. It's vile. And while some people can and do choose to utilize chemo to good effect, it should by no means be required.
ANY medical treatment be it natural or man-made, is not guaranteed to work. It should be a fundamental right to be able to choose what treatments to pursue, and what not to pursue. That's what freedom is, after all.
groovesinorbit: (dark tower)

[personal profile] groovesinorbit 2009-05-21 02:56 pm (UTC)(link)
I pretty much agree on the kid with cancer. If he wanted the treatment, it would be one thing, but he apparently doesn't. So, he doesn't want it, his parents don't want it. But doctors are infallible and just this side of God, so they must be obeyed!

Fuck that.

[identity profile] wednes.livejournal.com 2009-05-21 03:01 pm (UTC)(link)
*nods*

[identity profile] sashakovich.livejournal.com 2009-05-21 04:27 pm (UTC)(link)
I admit that while I strongly dislike government meddling in the raising of chilluns, I also feel pretty strongly that these parents are either being willfully ignorant or are just assholes. More frustrating, they are only claiming a religious objection to it after he has gone through an initial round of chemo. Triple worse, their natural medicine that they're going with? It's information the mother found on the internet claiming that they can cure their son's cancer with high pH water and lightly sauteed rice.

I get really frustrated with these people, because their cases are loudly publicised when they stop treatment and start feeling better immediately. The media picks it up and creates a loud mistrust of oncologists and medical practices, but then drop the story shortly afterwards. Viewers only retain the idea that chemo is miserable, and stopping chemo will make you feel better. Afterwards, these people almost always sicken and die, and learn the most brutal possible way that dying of cancer is much more painful than chemo was. This portion of their story goes unreported. I'm not going to deny that chemo sucks, but even at a stage 2 diagnosis (where he is right now) he's still got an 85-90% rate of survival. Without it, his chances of survival past five five years drops to a level where the doctors don't bother making percentage predictions.

The ugliest part of this whole debate is the question of what age a child is capable of making an informed decision about their treatment. Daniel is 13, and I start feeling that he should have some say at this point. (Even if I feel very strongly that he's making the wrong choice). But what about those parents who had a 10 year old with type 1 diabetes who decided to pray away her pain instead of giving her a fucking insulin shot? The parents who decided to raise their infant on a completely vegan diet and watched her starve to death? Where does it cross the line between religious freedom and outright neglect? Parents should be the authority on raising their child, but I object a bit to your wording; it's not until I disagree with them, it's when they start making decisions that will actively lead to a child's harm.

So aargh... while I've dealt with my fair share of asshole doctors, I don't think it's fair to ignore the spread of misinformation and distrust that stories like these put in the media atmosphere. I won't argue that the history of psychiatric medicine is full of bullshit treatments, either, but modern oncology is a far cry from the insulin comas of the 50s.

Ultimately, I agree with you; the government doesn't have a place telling this kid he has to get chemo. He's old enough to make his own decision, even if that decision is a death sentance. But I'd still like to slap him in his fool mouth, just a little.

[identity profile] madush69.livejournal.com 2009-05-21 04:33 pm (UTC)(link)
*applauds*

[identity profile] sashakovich.livejournal.com 2009-05-21 04:37 pm (UTC)(link)
A good source of blabbity blabbity about the case that goes way past what most of the AP is talking about

(Not going to pretend like Dr. Gorski isn't a deeply biased man, but it's easier for me to pick out information from folks if they wear their biases on their sleeves.)

[identity profile] rivetkitten.livejournal.com 2009-05-21 05:33 pm (UTC)(link)
I will +1 this, with one exception:

Legally, a child is not able to consent to pretty much anything until they hit 18. I would say that at 13, even with the experiences he's already had, this poor kid doesn't really know the kind of decision that he's making. Yes, chemo sucks, and you're going to feel better for a little bit when you quit. But at 13, at least according to Piaget, he is just starting to be able to understand abstract concepts and planning for the future.

In my personal opinion, when a child is 13 the parent should still have a say in his or her upbringing. However, when the parent deliberately chooses a course of action which can cause lasting psychological or physical harm to their child, then it is the duty of children's welfare agencies to step in to protect the child.

[identity profile] sudrin.livejournal.com 2009-05-21 07:16 pm (UTC)(link)
I think they had a Star Trek episode about this.. Sadly its the slipperiest slope there is. While I agree with what you said, I also believe that misguided parents can easily indoctrinate children to believe whatever they do. Of course, I don't pretend to have a solution, but i've seen some messed up parents raise some messed up kids. Of course, as you say, it is from MY perspective so I can't disagree with what you said. I can just say that its sad to see ANYONE die.

[identity profile] wednes.livejournal.com 2009-05-21 07:25 pm (UTC)(link)
I hear you, man. There are certainly some valid points here. It can be a blurry line that lies between parental choice and neglect...much like there can be a fine line between discipline and abuse.

There are probably lots of good reasons why this kid should get chemo, but none of them have to do with the decree of a judge who's probably met this kid twice in his life.

[identity profile] wednes.livejournal.com 2009-05-21 07:34 pm (UTC)(link)
Indeed, most parents tend to want their kids to grow up believing as they do--and take steps to make that happen, with mixed results. Personally, I think teaching children the concept of "original sin" can by psychologically damaging to them. But you rarely hear people discussing the dangers of Christian parenting.

I totally agree that it's a sad situation with this kid. Kids shouldn't have to think about whether or not to get chemo. They should be thinking about baseball and college and Xbox and stuff. But a judge is not a medical doctor, and it shouldn't be up to any non-medical person to decide what a patient needs or doesn't.
That said, the law works in such a way that a doctor cannot legally mandate treatment. The most they can say is "well, if you don't want to die you should have X procedure." Then the people involved can make informed choices.

Frankly, this kid's mother sounds like a loon. And if she's judged incompetant (by a doctor, not a judge) to raise her kid, that's another story.

[identity profile] wednes.livejournal.com 2009-05-21 09:45 pm (UTC)(link)
That is, of course, all very reasonable. The judge in this case agrees with you.

For me the larger issue is whether or not the government has the right to step in and force you to get medical treatment you don't want. Legally, they do if you're a minor. I think you're right, I don't think the kid is really old enough to appreciate the weight of his choice. At the same time, I'm uncomfortable with the idea of diminishing the value of his choice based on his age. I just wonder if his doctor has really sat down and talked with this kid.

[identity profile] rivetkitten.livejournal.com 2009-05-21 09:53 pm (UTC)(link)
Legally, the doctor can't sit down and talk with the kid without the kid's mom present unless she consents to leave the room. Since she's his legal guardian, if she doesn't want to leave the examination room so they can talk, she doesn't have to. Since she sounds kinda nuts, I'm betting that she wouldn't leave her son with the doctor to talk. :-/ I hope I'm wrong.

[identity profile] jenx.livejournal.com 2009-05-22 12:09 am (UTC)(link)
I think I'd be closer to feeling as you do if the kid could actually *read*. His mother has been 'homeschooling' him, and he's illiterate. There's a whole lotta fail going on here, but I think it starts with the parents who tell their child that because chemo hurts, they should be able to let him die. Vaccines hurt too, but most parents understand that the benefits outweigh the pain.

[identity profile] maxverbosity.livejournal.com 2009-05-22 12:10 am (UTC)(link)
I've always been suspicious of people who object to treatments for religious reasons only because it seems a convenient thing to say (I mean, being a SubGenius, could I not claim it is against Bob's wishes that I NOT receive something? LOL). The flip side is that too many parents indoctrinate kids into believing some wacky and at the same time hideous things (e.g., Christian parenting in general. Hehe)

Anyhow, from the standpoint of being someone who is also in favor of assisted suicide, I have always believed that, if you don't want a course of treatment, then you shouldn't be forced to get it, especially if it will only prolong your wait for the inevitable as happens with far too many terminal patients.

From what I understand, the chances of the kid surviving with the chemotherapy were pretty good - that might have been the sticking point. I am not sure honestly. There is also the notion that he is a minor and I believe that drastically changes the picture legally - if it were you or me, they would have just noted that we were doing something against medical advice.

I know there have been cases where children have died because their parents chose this route (I can remember this being widely dissected in the early 1990s). I will be honest here, and maybe it is inconsistent with other things I have said - I do believe those parents to be liable for the deaths of their children, although the court record on it at the time was mixed.

[identity profile] wednes.livejournal.com 2009-05-22 12:12 am (UTC)(link)
Whoa, I read three articles on this and none of them mentioned that he couldn't read.

[identity profile] wednes.livejournal.com 2009-05-22 12:16 am (UTC)(link)
Actually, I just found out that in this particular case, the kid didn't even go to school. So while I stand by my original statements, it makes a big difference in how much say the kid should be allowed to have in his own care. I was basing my earlier comments on the presumption that he was as educated as a 13 year old would normally be in this country. No dice.

[identity profile] maxverbosity.livejournal.com 2009-05-22 12:20 am (UTC)(link)
I saw that too. If that's the case, I don't know that, if I had been the judge, I would have ruled differently then. They've done a massive disservice to that kid if he is in his early teens, homeschooled, and illiterate.

[identity profile] jenx.livejournal.com 2009-05-22 12:23 am (UTC)(link)
Yeah. This isn't an informed family who has made the best choice for them - this is a group of nutbars who have made a poor choice for dumb reasons.