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Friday, January 9, 2015

When Just Saying No Isn't Enough

When I was about eleven, I started to have the symptoms of what eventually became hardcore sinus problems.  At the time, though, it was just a constant runny nose and getting every cold and flu that came around.  After missing more than the usual amount of school, I got taken to a specialist.  The specialist decided, using the best in late 1970s medicine, that what I needed was cortisone injections in my nose.  You know what cortisone is, right?  That white creamy stuff that you rub on your skin and it stops itching? Yeah.  They took a giant syringe of the stuff and injected it into the blood vessels of my nostrils.

Have you ever had a shot of novocaine at the dentist's office?  That's kind of what it felt like. Only with liquid fire.  When you go to the emergency room, they ask you what your pain is like on a one to ten scale.  This was, oh, about eleven.  But I'd had it pounded into my head for years by then that One Does Not Make A Fuss Unless It's An Emergency (which it wasn't; pain is not an emergency.  A severed artery--now, that's an emergency).  So I didn't make a fuss.  I had three injections over three weeks, I think, and my head didn't explode, even though I felt like it would.  And remarkably, the stuff did work.  I didn't get sick as many times that year.

The next year, when it came time to have another round of liquid fire injections up the schnoz, something was different.  I'd turned twelve, for one thing.  I'd evidently grown a pair, for another.  Anyway, I announced I didn't want to have the shots again.  My mother was surprised, but not upset; she just called the doctor and told him I didn't want to have them.  The doctor said (this was back when doctors actually talked to you on the phone) that I'd get every cold and flu that went around.  My mom covered the receiver with her hand (this was also before hold buttons) and said, "He says you'll get every cold and flu that comes around."  I said that was fine.  So I didn't have the shots, and I got every cold and flu that went around.  Maybe not the choice everybody would make, but no liquid fire in my nose made me very happy.

The next year we'd moved and I saw a different allergist.  This one told me that I'd actually been very lucky; plenty of people got those sinus injections in the wrong artery and went blind for life. And incidentally, I was getting every cold and flu that went around because I had malformed sinuses, not because I didn't have cortisone injections.Then about 25 years later, I had sinus surgery and now I only get sick once or twice a year.   So happy ending, kind of.

Good thing I didn't live in the grand old state of Connecticut, whose Supreme Court ruled today that there's nothing wrong with forcing a 17-year old girl to have chemotherapy against her will (sedated and strapped down, according to some articles).  And that a parent can lose custody of a child for failing to follow doctor's orders.  Now, a lot's been written about this case, so I'm not gonna get into a big discussion about whether or not this girl should have chemo.  Of course she should.  She's sick. Chemo will probably help her.  No argument about that.  But just because you should do something doesn't mean you have to do something.  Plenty of adults, when offered chemo, turn it down.  Sometimes they try other treatments and sometimes they don't.  Sometimes they die of cancer, but sometimes people die of cancer anyway.  The point here is that the state is literally and physically forcing this girl into chemo, nine months before her 18th birthday, at which point she could walk out of any hospital in the United States AMA and flip her oncologist the bird on the way out the door.  And there are a lot of unanswered questions here.  Ferexample, what's the difference between eighteen and, say, 17 and 3 months?  Why should a 17-year-old, who can get birth control and have an abortion without a parent so much as being notified, not be allowed to say "no" to a certain medical treatment? And most important as far as the subject of this blog post, when can a parent legally refuse medical treatment on behalf of a child?

Well, if you're in Connecticut, the answer is essentially "never."  If a doctor recommends treatment and you (or you and your kid) decide that you don't want to do it, you can lose custody of your kid and the treatment can be applied by force.  We've seen this before in the Justina Pelletier case (Justina was also from Connecticut, though she was incarcerated in Massachusetts).  And all the places that this can go are absolutely guaranteed to keep you awake at night, if you're a parent.  Or even if you're not.  I'm not, and this stuff drives me absolutely ballistic.

Ponder this: Your kid's been diagnosed with a mental illness.  Your doctor has prescribed a drug that, I don't know, among other things makes him projectile vomit, or get dizzy and fall down.  He doesn't want to take the drug because of the side effects, and you don't want him to either (cleaning up vomit does get old occasionally; trust me on this, I have three cats).  So when you tell the doctor you're refusing the drug, are you now a criminal?  A bad parent?  Does it make a difference if there are other drugs that might work just as well, but the doctor's giving you the one where he gets the kickbacks from the pharmaceutical company? And how would you even know that? I don't imagine a whole lot of parents have read up on psychopharmaceuticals, though frankly, more of them should.

Okay, well, maybe it's not the same in every circumstance.  Maybe the state can only force your kid into treatment in life-threatening circumstances.  But let's just say that your teenage son is overweight.  Your doctor thinks he should have bariatric surgery (which is a risky proposition for an adult, never mind a kid, and which requires all kinds of aftercare essentially for life).  Now, can you say no and suggest the kid instead try a better diet and more exercise?  Or, because obesity can kill you (just like life, which is unfortunately terminal), are you now required by law to say yes?

This is particularly galling because of a thing called the "mature minor doctrine".  Some states have determined that if you think like an adult, talk like an adult, and make decisions like an adult, you can choose your own medical treatments in limited circumstances.  Usually you see this kind of thing when a kid has, say, a facial deformity, and wants to have it surgically corrected.  Sometimes the parents say no, either because of cost or because of some misguided religious thing about the deformity being a "mark of sin".  Anyway, courts have been known to step in and say that the kid can consent to his own surgery.  It's the same logic used when an underage woman wants to have an abortion. Some states view pregnancy itself as an emancipating condition that puts the decision in her hands. (Others, like Texas, say she has to have consent from her parents--or prove to a judge that she's "mature" enough.  Because if she's not mature enough, you know, she should become a mom and fulltime caretaker of a tiny helpless human being.)

The Connecticut court considered the "mature minor" argument and rejected it wholesale.  Among other things, they said no mature minor would promise under oath to get chemo and then run away from home to avoid it.  (Conveniently absent from this argument was the part where, while she was under oath and being asked to make this promise, the minor in question was also told she'd be allowed to go home if she said yes--and she was incarcerated in a hospital room at the time.  I think that's called "consent under coercion", which renders it essentially meaningless.) But even if she was a mature minor, Connecticut law didn't recognize such a thing, so she had to have the chemo anyway.

Which, I think, amounts to, "You aren't doing what we want, so we're going to force you to do what we want, because we can do that."  Look, most people in this kid's situation would opt to have the chemo.  If she has it, she has an 85% chance of surviving at least five years (which isn't the same as being "cured", but is pretty good odds).  But this kid is not most people and she said no. What was more, she discussed with her mother and her mother agreed that it was her call.  However, the opinion of the court seems to be that it was the mother's job to force her to have the chemo, and since she didn't do it, she had to be punished by losing custody of her daughter.  It seems like the overriding theme here is, "Do what most people would do, and we'll leave you alone; do something different, and boy are you in trouble."

So why is this such a big deal, you may ask. So a court can force a kid to have chemo.  Well, there are plenty of situations where medical care is inflicted on adults because they are seen as not being competent enough to refuse it.  DNRs are ignored; people are placed on ventilators even though it says clearly in their living wills that they don't want one; brain-dead pregnant women are kept on life support on the small and dwindling chances that their fourteen-week-old fetuses might make it to viability (update: it didn't). Women are told by their states that they must submit to a medically unnecessary vaginal ultrasound before they can have an abortion (state sanctioned rape, in other words).  I could go on, but you get the idea.  It's rapidly becoming more acceptable and legally permissible not just to have access to medical care, but to require it of some people. Usually poor, dark-skinned people. And children. And women. Which seems to be a theme.

In closing, civil rights need to begin at the skin.  I want an amendment to the Constitution stating that the right of persons to be not-messed-with shall not be abridged.  And I think seventeen is plenty old enough to accept or reject chemotherapy.  Because, seriously, they let you drive when you're sixteen, and then you're not taking just your own life into your hands but the lives of every other driver around you. And driving is a lot more dangerous than chemotherapy.  I'm just sayin'.

1 comment:

Marcia Wall said...

I am so glad you wrote this. I was hopping mad when I read about the decision. I don't want any treatment forced upon me.