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'.

Can't See The Giant Soul-Sucking Club-Wielding Trolls in the Forest for the Trees

There's some stuff I've been wanting to get off my chest for months, so let's just start there:

1. The First Amendment of the U.S. Constitution states that freedom of speech and of the press shall not be abridged.  That means you have the right to an opinion.

2.  You also have the right to speak that opinion, or express or publish it in any way that's open to you.

3.  You do not have the right to be free from any and all criticism once you express that opinion.

4.  Because, shocking as it may seem, all other people also have the equal right to an opinion.  

5.  You do not have any absolute right to be paid for speaking that opinion.  

6.  Further, if you are being paid for speaking that opinion, you can be fired at any time.  There's nothing in the Constitution that says anybody paying you for speaking that opinion cannot at some point decide to fire you.

7.  Ferexample, if you're getting paid to advise your clients on, say, their investment portfolios, and you suddenly decide to opine on the ugliness of your client's tie and the degree to which he was an idiot for voting for McCain, your boss would have every right to fire you.  

8.  So if your opinion, and your manner of choosing to speak it, ends up costing your employer a lot more money than it would have cost him/her if you'd just kept your big yap shut, you should really not be surprised at all if you get fired.  

9.  And that goes for everyone around you.

Okay? Okay.  Let's move on: 

The rumors are true, everybody.  Various press factions are actually agreeing about this.  After spending ten months locked in a psychiatric ward because her parents and the state of Massachusetts disagreed about what was best for her, fifteen-year-old Justina Pelletier is finally getting out.  Well, not OUT out.  She's not going HOME home. But she's leaving the psychiatric ward and going back to Tufts University Hospital, where this whole sordid saga started out. She's going to a "step-down" unit because she's still "medically fragile."  She's still in state custody, and her parents still want her back (naturally).  But that can happen later. She's leaving the psych ward. She might even able to (gasp!) go outside.  And maybe, instead of being restricted to a 20-minute phone call once a week and a one-hour supervised visit, she can actually start seeing some of her friends and family members.  

At some point, the ongoing argument between her parents and the Tufts doctors vs. the doctors at Boston Childrens' Hospital  needs to be resolved.Interesting, though, that the Judge decided to send her back to Tufts.  That sounds like a vote.

Now, this case hasn't been reported extensively in the media. (And why not? Fifteen-year-old sick girl? Incarcerated with crazy people when there's no evidence she's homicidal or suicidal? For ten MONTHS?  Hello? Anderson Cooper?  You need to start reading my emails.) Well, actually there's a gag order, which means we don't have a fresh set of facts every time there's a court hearing. Media needs sound bites, so that's a problem.  It's also problematical that this whole thing has become a big debate about parental rights -- that is, your right to choose who cares for your sick child and under what circumstances.  Methinks that focus is entirely off.  

In a nutshell, Justina is a sick little kid. I won't elaborate because it's out there if you want to find it but myself, personally, feel a little weird about reporting the medical symptoms of someone I've never met, much less a minor.  I feel weird enough using her name, though it's been around the media for a while. (I can see it now; ten years in the future, Justina graduates from college, goes on her first job interview and the interviewer says, "Oh yeah. You were the kid who spent ten months in the psych ward.")  She had one diagnosis from the Tufts doctors, who had prescribed medication and on which she was doing pretty well.  She was even a competitive ice skater back before all this began. Then one night she came down with unrelated pneumonia and her parents took her to Boston Childrens' on the advice of the pediatrician.  Within a few days, the doctors at Childrens' decided this was a child abuse case, called in the Department of Family Services and took custody of Justina under an emergency court order.  The hospital told Justina's parents that her illness was all in her head, in a manner of speaking, and sent her to the psych ward without letting her parents seek a second opinion.  And there the matter rested, while Mom and Dad and the State fought about it in court.  

For ten months.  Ten MONTHS. Truly, I'm ill.  Look, people, both the WHO (Principles 4 through 8) and the AACAP have guidelines about who needs to be in a locked psychiatric ward. Both of them talk about this thing called the "least restrictive environment."  And both of them pretty much agree that kids don't need to be locked up in any way, shape or form unless they're homicidal or suicidal, and some lesser variations on the theme. Justina's in a wheelchair.  She can't walk by herself.  She's not very likely to kill anybody.  I don't know if she's suicidal (I would have been), but even if she was, why did it take ten MONTHS to stabilize her? That's pretty sucky medical care.  Most patients take a few days, a few weeks at most. And then if she still needed to be in the hospital, they could have sent her back downstairs to the pediatric ward. 

But that's what tends to happen, when two opposing forces get into a pissing match about who's right.  In the meantime, the thing they're fighting about tends to get totally overlooked.  That thing, in this case, was Justina. Everybody just kind of forgot that she had any civil rights at all, including the right to personal liberty.  Justina had a court-appointed guardian (which is typical in cases like this), and not even the guardian thought to bring up to the Judge that Justina hadn't done anything wrong.  That maybe being behind bars was not in her best interest.  It took a civilian complaint from a psychiatric nurse, made as part of the mandatory reporter rule (if you're a health care provider, and you suspect a child is being abused, you have to make a report--yes, that's what started all this, but this time it worked in Justina's favor) to get that issue even looked at.  And I'm still not sure it's really been looked at.  Justina wasn't at her own hearing.  Why is that? She's fifteen, not six.  She probably has an opinion. Even if it isn't followed, it should be heard.  

  Like most people, I think I'm right about certain things.  In fact, there are some things where I'm so sure I'm right that if you think otherwise, I'm likely to dismiss you out of hand.  If you don't know what those things are, you probably haven't been reading this blog very long.  But I try to be very careful about this whole concept of absolute rightness.  You may be an elephant-hugging Republican while I'm a kiss-my-ass Democrat (85% liberal, according to this survey from Time Magazine)  but we can still probably talk about some things and who knows, I might even learn something from you.  

But if we can't be respectful of each other and remember that we both have the right to an opinion, we might start arguing about who's right, and bring reams of statistics and telling personal anecdotes to illustrate the points.  By the time we're that far, all we're going to do is drive each other crazy.  Sort of the pounding of the unstoppable forces on the immovable objects.  And we'll each leave thinking the other is nuts or mean or stupid, which isn't true (no, it's never true), which both demeans the other person and drags us down (because we become the kind of person who would write off another human being because he or she disagrees with us, and who wants to be that kind of person?) 

So anyway, the next time somebody's driving you crazy in a long ridiculous argument that doesn't seem to have any frickin' point, maybe you can catch yourself and say, "Why am I so gung-ho to prove I'm right, here?" And maybe, once you do that, you'll realize that nobody's right, anyway.  Everything changes all the time.  What you're right about now, you may realize tomorrow is completely wrong.  Meanwhile you've expended all that time and energy, made yourself angry, made the other person angry and in the middle of it all, you've lost all sight of the basic point.

Which, I think, is what happened to Justina.  I doubt she gave a shit which doctors were right as long as she could see the sunlight and be with her family.  I hope she has calmer days, blue skies and no locked doors ahead.