Monday, November 15, 2010

Healthcare, autonomy, and no easy answers.

When I went to the ER a couple weeks ago with a high fever and severe abdominal pain, they did a pelvic exam and a vaginal ultrasound. These were absolutely necessary to rule out life-threatening conditions--I could have had an ectopic pregnancy or an ovarian torsion, and no one wants me to die because they were too demure to check out my no-no places.

But I was sick to the edge of rationality and had been given a combination of medications that were extremely sedating and confusing. I was in and out of consciousness, and when I was conscious it was in a numbed, blunted, incoherent sort of way. It was not a condition in which I would customarily be able to consent to vaginal penetration. Not that I was really asked; the conversation was more like:
"This is going to go in your vagina now. Scoot down a little."
"Mmmrf?"
"Nurse, scoot her down a little."
"Mrrf."

In the world I normally live in, "mrrf" is not considered enthusiastic consent.

Medicine isn't subject to the same rules as sex, and for good reason. The doctor wasn't doing this for his personal enjoyment, and my life was potentially on the line. The medications weren't given to make me more malleable but because I was crying and puking. Messing with the vagina of a confused sick woman isn't an evil scheme but an unfortunate necessity in a bad situation.

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My least favorite thing to do when I'm working in the ER is restraining children for catheterization. It's not so bad with babies, but with kids who are old enough to say "no, no," it makes me fucking hate myself. I don't think "sometimes you can't stop strangers from holding you down and doing painful things to your genitals, and your parents will just sit there and watch" is a message I ever want to send to a kid.

I can't even always play the "but it's necessary" card on this one, either. Most of our child catheterizations are not because the kid can't pee, but because the kid can't pee on command and we need a urine specimen. A lot of the time with some patience the kid probably could pee in a cup or stick-on external bag. Or, very often, we find the kid's problem by other means and it has nothing to do with their urinary tract, and if we'd waited thirty minutes we'd have known we didn't need to catheterize. So we're not doing this stuff because it's fun, sure, but we're doing it for convenience, not necessity.

I've considered refusing to participate in this sort of thing, but then someone else will just do it, and what the hell difference does that make? If I made a big enough stink I'd get fired while someone else went on and did it anyway.

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Later in my hospital stay, I started feeling much better. Not great, sure, but no longer dependent on hospital services. My problem had been diagnosed, I could walk, and I could take adequate fluids by mouth. I asked to leave.

And I was told "well, we'll see about that." The nurse and the first doctor I asked told me it was simply out of their hands, so sorry, but they'd try and pass it along, the whole "competent non-criminal adult would like to leave" thing. I thought about removing my IV since it was very uncomfortable and I knew I didn't need it, but I was afraid that being a competent non-criminal troublemaker would lose me what little respect I had.

Of course, I could have walked out the door and nobody would have physically grabbed me, but there's this thing called "AMA." Against Medical Advice. If you leave AMA--without your doctor's permission and all the proper paperwork--your insurance doesn't pay. So sure, you can have your freedom, as long as you've got twenty thousand dollars handy.

Four hours after I asked to leave, the correct doctor came and talked to me. He told me he wanted to keep me another night just to be safe. I begged to go. I negotiated. I felt scared as fuck because he could have said no and that would have been it. My freedom was up to this stranger's personal opinion. In the end, though, I managed to plead my way out. Five hours after that, the correct paperwork was done and I was allowed to leave.

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My second least favorite thing in the ER is dealing with psych patients. If you walk into an emergency room of your own free choice and tell us that you are having hallucinations or you feel suicidal, we will take you back, take away and lock up your clothing and possessions, and tell you that you cannot leave. If you ask to leave, we will first calmly explain that you cannot, then badger and condescend to you, then threaten to physically restrain and forcibly medicate you.

Policy states that if someone attempts to leave non-violently, if they simply walk toward the door, we should try to talk them into staying but not lay hands on, and call the police when they cross the property line. (The police, of course, will lay all the hands they need to, as will we when we take the patient from the police and throw them in restraints.)

This policy is not followed. If you are deemed a psych hold and you walk towards the door, several burly men will throw you to the ground and hold you down. A bed with straps will be brought. You will be taken to a private room ("private" from the public, not from the five or six strangers in there with you) and have psychoactive medications injected into your buttock. They will then secure you spread-eagle to the bed. With good behavior you might be released in as little as an hour. Acting upset or angry about being restrained, or being aggressive in your requests to be released, are not considered good behavior.

Of course, most of the people we do this to really are completely psychotic. They really wouldn't be safe out on the street and they might be a threat to others as well. Of course you can't let a guy who randomly attacks people at Satan's behest just walk out because Satan told him to. But far too often we restrain people who talk to Satan but don't hurt anyone. Once someone gets the label "crazy," all's fair. And if they don't like it that's just evidence of how damn crazy they must be.

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Like the title said, there's no easy answers. Healthcare can't follow the same rules as casual social interactions. Procedures on the genitals aren't sex and keeping someone until their safety can be assured isn't kidnapping. A healthcare system that made it easy for patients to opt out of everything unpleasant would be up to its ass in corpses and lawsuits within a week.

But a healthcare system that makes it difficult or impossible for human beings to opt out of pain and confinement is... it's enough to get me reading the "Help Wanted"s again, I'll tell you that.

21 comments:

  1. "Most of our child catheterizations are not because the kid can't pee, but because the kid can't pee on command and we need a urine specimen.

    I've considered refusing to participate in this sort of thing, but then someone else will just do it, and what the hell difference does that make? "

    And, sometimes you get lucky and the parent refuses for you. When my kids were little, they were in the ER for the usual kid nastiness. They wanted to do UAs to check for dehydration and this was after they put in IVs. My reasoning was, they have IVs and you're giving fluids. Is treatment going to change if they're dehydrated? No? Then no U-Cath. Thanks for the stink-eye doc and fuck you, too.

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  2. I wish I heard sentiments like those expressed in this blog entry and in the comment above mine more often. I've had some more than unpleasant experiences with health professionals. Doctors (& etc.) need to recognize the rights and dignity of their patients, regardless of if that patient is a child, mentally ill, or anything else.

    (Note: I have a lot of respect for most doctors and other people in the health professions. I'm hoping to be a doctor one day myself. But, like with anything else, there are those few out there who are inconsiderate, irresponsible, and honestly a fucking disgrace.)

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  3. This reminds me of my experiences teaching high school. We didn't do anything quite as drastic, physically, but we were still expected to keep the students in class and only let them out rarely to go to the bathroom or whatever. We had to force them to do work, so as not to set a bad example for the other students, force them to not access their phones, etc etc. And it makes sense, to an extent. If one person's doing it, everyone will think they can do it and then half the class won't pay attention, they'll do poorly on the end of course test, they'll fail, you'll have too many students who fail and potentially get punished, and the school will have too many students who fail and get punished.

    But I hated it. I wanted to let these 17 and 18 year olds who were having sex, driving cars, potentially serving in the military, making significant life choices decide when they could go to the goddamn bathroom. And that made me a bad teacher.

    As you say, there's no easy answer. But regardless of whether others will do the same after I quit, I just couldn't do it myself.

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  4. This stuff is hard, as a mad person and a mad activist I struggle with it, I have problems with restraining anyone who isn't a dangerous to others. I realise this is a fairly extreme view and I struggle with it because I know that being implemented would probably lead to more deaths in the mental illness community.

    Another place this comes up is in family based treatment for anorexia which is fundamentally anti atonamy. From what I have read this has the best outcomes around but I flinch at the idea of taking power away.
    (http://en.wikipedia.org/wiki/Maudsley_Family_Therapy)

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  5. "...keeping someone until their safety can be assured isn't kidnapping..."

    I think I agree with everything else here, including (especially) the many many nuances of it, but... I think this pretty much is kidnapping, even if it's Kidnapping For Good or something.

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  6. I work in an intensive rehab facility (Level 4) for mentally ill, and my agency is zero-restraint. It pretty much touts "Don't touch, stay away and be safe!" Which is quite different from other agencies I've worked for.

    Many of my clients love going to the hospital because they get to dope up legally. What's spending a few days in a highly restrictive setting as long as you don't have to feel anything?

    Seriously though, I hate the stigma associated with the psych ward and the way patients are treated. As for what you have to deal with... it's exactly why I switched out of that field. Taking away someone's agency is just too much for me.

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  7. Glad to hear you are the picture of health. It's a different experience being on the gurney and not beside it. And I think we all expect to face a few indignities and relinquish control in these situations.

    Nice hearing a medical perspective on it.

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  8. June Clever - Good for you. Medical staff are at such a loss when people say "no"; usually they (we) aren't offended so much as baffled by the Impossible Paradox before their eyes. But the doctor ordered it, ma'am. A thing has to happen if it's an order.

    1:33 Anon - The things I describe in this post aren't really "one bad apple" situations; they're systemic. While individual doctors and nurses can be more or less polite about it, the entire model of healthcare delivery is based around the idea that the patient doesn't know what's best for them.

    Cheshire - "Danger to self" situations are really sticky. On the one hand, I think that suicidal people really want to stop suffering rather than die, and anorexic people really want to like their bodies rather than starve. On the other hand, taking away someone's freedom purely "for their own good," when they pose no harm to others, really bothers me ethically. I don't want people to die in premature and unhappy ways, but I'm not sure that always justifies violating their human rights.

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  9. As a radical individualist market anarchist personal sovereignity type entering the EMS field... Yeah. These sorts of things have been preying on my mind quite heavily. Along with "hrm, crap, I pretty much have to take tax money as at least part of my paychecks if I want to participate in this."

    I cringe a bit every time the phrase "implied consent" is uttered in class.

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  10. Ugh, I could write a really long rant on this as it relates to parents and especially to giving birth. Wow, the things we accept because we are told to by an authority figure! And I'm sure the more marginalized someone is, the less likely they are to have the clout to resist without consequences.

    I was just on a tear about this story:
    http://criminaljustice.change.org/blog/view/losing_a_baby_over_a_poppy_seed
    There is NO EXCUSE for a hospital to routinely drug-test after birth (in the absence of any probable cause). Seems like such a clear 4th AND 5th Amendment violation, the only way this could be happening is a War on Drugs Trump Card.

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  11. A lot of this is just setting out what bothers me about healthcare. It's not generally an immediate issue because I've never actually needed to go to the hospital (and because I don't have insurance, it's been about six years since I've been to a doctor even for a check-up), but there seems to be a general lack of respect for autonomy that I find creepy and upsetting.

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  12. 1:33 anon back.
    That's what I was trying to get at. I think. I was pretty sleep-deprived last night and I don't think I expressed myself very well.

    Basically, I was just happy to see someone write about this issue - the taking away of a person's agency in healthcare and other situations. It's something that's always really, really bothered me.
    I think I should do a little more research into this. Perhaps I'll be able to express my viewpoints more clearly.

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  13. Hopefully if we can reduce the number of frivolous malpractice lawsuits down to a minority doctors will be more willing to release patients that are not 100% in perfect health but will still be just fine at home.

    My hopes are not high for this outcome though.

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  14. The problem of reduced agency is just huge for aged patients who appear to have a reduced mental capacity. I've seen doctors ignore the wishes of my grandparents too many times to count, and assume that they are unaware of their own medical needs.

    If my mum hadn't been with my grandfather in hospital recently (my grandfather who has impaired speech thanks to a stroke, but not impaired cognition, but is routinely treated like he's addled), he would have been given an insulin shot that could have killed him - because the doctor took his blood sugar and refused to believe he wasn't diabetic, notwithstanding the fact that he'd had a hospital-provided high-sugar dessert an hour beforehand, and the fact that both my mother and grandfather were insisting that he had never in his life had any major indicators of diabetes not entirely explained by his other health issues.

    Ok, sometimes the issue's about incompetence rather than agency.

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  15. Holly

    You didn't ask properly. It's not MAY I leave? The phrase is "I am going to leave, where are my clothes?" or, better yet, "I am leaving."

    Another phrase you can use for a doctor who is not listening to you "You're fired." The doctor patient relationship is built on trust, and if you have no trust, there is no relationship.

    They might give you the stink eye, but they cannot DO anything.

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  16. @william: sure, you can leave -- if you want to fight your insurance company over the bill, or at a minimum have them refuse to cover the cost of the return visit if you DO end up back in the hospital for the same illness. Dunno about you, I ain't got that kind of money.

    In the world I normally live in, "mrrf" is not considered enthusiastic consent.

    Uhh... we've been to some of the same gatherings, and I think I've heard you make EXACTLY that noise in enthusiastic consent...

    The medications weren't given to make me more malleable but because I was crying and puking. Messing with the vagina of a confused sick woman isn't an evil scheme but an unfortunate necessity in a bad situation.

    Y'know, if you ever decide you're tired of using 'The Pervocracy' as your blog name, 'Messing With The Vagina Of A Confused Sick Woman' ain't a bad second choice...

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  17. @Jack

    You refused to consent to treatment. Don't pay the bill. Of if you do pay the bill, pay it $5.00/month. I used to work for a hospital. Trust me, they get stiffed all the time. Oh, medicare rule force them to send letters and such, but if the bill is low enough, it's not worth the hassle.

    The patient has more power than they think. Refuse to pay, pay slowly, threaten lawsuits, make Press-Gainey complaints and fuck up patient satisfacton scores.

    Besides, if you're really poor, they don't sue you, as you have no assets to take.

    William the Coroner

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  18. Williamthecoroner - I do have enough money for them to take, but not enough to be okay with them taking it. I also have my credit rating to worry about.

    Plus, I just don't think it's a reasonable solution to expose myself to that. I shouldn't have to risk getting sued or going to collections or being in massive debt. I didn't want to screw the hospital or fuck stuff up for them. I just wanted to go home.

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  19. On psych patients: one of my worst memories is being brought to the hospital after overdosing. All I really remember is walking into the ER with the friend who brought me, collapsing into a wheelchair, and being strapped to a bed by my wrists and ankles. I had come of my own free will and had no intention of leaving, but I had to pee, and I kept asking them to undo the straps so I could go to the bathroom, but they wouldn't. I think I passed out at that point.
    The next morning, I woke up in a different hospital bed, still strapped down, with a nurse staring at me. About three seconds after I opened my eyes, she started pestering me about God and faith and selfishness and I got so fed up that I finally asked if I could have a different nurse. They said no. When I asked why, it was because she worked with all suicidal patients and all had reported her as being "soothing".
    Finally a psychiatrist came in and told me I was a selfish little child who needed to stop faking things for attention. I started crying, and told him to get the hell out of the room, and they gave me a tranquilizer in my butt, because apparently I was irrational.

    It was a fun couple of days.

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  20. Give me liberty or give me death.

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  21. It makes me glad I'm living in the UK, I've had big problems with self-injury and being suicidle, ended up in A+E alot (our version of the ER) I find hospitals pretty stressful at the best of times, and quite a lot it was friends who brought me to the A+E to get stiches...and sometimes I just couldn't make myself stay. ok, quite often they were quite glad to see me go (they were never ever happy about treating me) but they never made me stay...that would have been infinatly worse.

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