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August 23, 2017 3:37 PM Subscribe
Do patients who hear voices have the right to refuse psychiatric medicine? A growing movement says yes.
This approach underlies a controversial international movement that raises fundamental questions about what it means to be mentally ill. The question at the heart of the debate: Do patients who hear voices — and suffer other symptoms that psychiatrists would consider severe — have the right to direct their treatment, even if that means rejecting conventional therapies, such as psychiatric medication?
This approach underlies a controversial international movement that raises fundamental questions about what it means to be mentally ill. The question at the heart of the debate: Do patients who hear voices — and suffer other symptoms that psychiatrists would consider severe — have the right to direct their treatment, even if that means rejecting conventional therapies, such as psychiatric medication?
Kind of a strange framing...everyone has the right to refuse psychiatric medicine in the US except under fairly narrow circumstances. Merely hearing voices, by itself, would not generally be the basis for a long-term order for involuntary medication.
But...man. The more we expand and fuzz out the limits of psychiatric and neurological illnesses, the more the categories pull in people who are well able to function in life. That's good in that they can advocate effectively...but not good in that many of them seem to feel that their experience of the disorder must be typical and/or are deeply invested in the idea that their disorder is not much of a disorder at all, so that their advocacy more or less pretends that the more seriously-afflicted sufferers, the ones who genuinely can't function, the ones in severe distress, don't exist. The people in this article are not the filthy, urine-reeking people ranting at the air or at strangers who I see on the subway on a regular basis. You will not persuade me that such people have meaningfully chosen to be that way and are better off unmedicated, nor that we should recognize a "right" to be aggressive and threatening to strangers in public as they unfortunately sometimes are. I had such an encounter just last night, when walking by someone on the street and glancing at her because she was partially bent over as if she might be in stomach or chest pain was enough to set off a string of profane threats. Just threats, and I didn't engage...but whose life is made better by her being unmedicated?
posted by praemunire at 3:55 PM on August 23, 2017 [58 favorites]
But...man. The more we expand and fuzz out the limits of psychiatric and neurological illnesses, the more the categories pull in people who are well able to function in life. That's good in that they can advocate effectively...but not good in that many of them seem to feel that their experience of the disorder must be typical and/or are deeply invested in the idea that their disorder is not much of a disorder at all, so that their advocacy more or less pretends that the more seriously-afflicted sufferers, the ones who genuinely can't function, the ones in severe distress, don't exist. The people in this article are not the filthy, urine-reeking people ranting at the air or at strangers who I see on the subway on a regular basis. You will not persuade me that such people have meaningfully chosen to be that way and are better off unmedicated, nor that we should recognize a "right" to be aggressive and threatening to strangers in public as they unfortunately sometimes are. I had such an encounter just last night, when walking by someone on the street and glancing at her because she was partially bent over as if she might be in stomach or chest pain was enough to set off a string of profane threats. Just threats, and I didn't engage...but whose life is made better by her being unmedicated?
posted by praemunire at 3:55 PM on August 23, 2017 [58 favorites]
. You will not persuade me that such people have meaningfully chosen to be that way and are better off unmedicated, nor that we should recognize a "right" to be aggressive and threatening to strangers in public as they unfortunately sometimes are.
I am inclined to think that medication is a less urgent issue here than access to food, shelter, clean drinking water, and basic medical care. There are a lot of people whose mental health issues are very bad, but what's ruining their life is the stigma against mental illness and poverty and the US's failure to provide basic services to its citizens in an accessible, equitable way.
posted by restless_nomad at 3:58 PM on August 23, 2017 [68 favorites]
I am inclined to think that medication is a less urgent issue here than access to food, shelter, clean drinking water, and basic medical care. There are a lot of people whose mental health issues are very bad, but what's ruining their life is the stigma against mental illness and poverty and the US's failure to provide basic services to its citizens in an accessible, equitable way.
posted by restless_nomad at 3:58 PM on August 23, 2017 [68 favorites]
Merely hearing voices, by itself, would not generally be the basis for a long-term order for involuntary medication.
Of course not. But if you have decent insurance they will 5150 you (or your state's equivalent) and demand compliance to your psychiatrist's treatment regime before you get out.
If you don't have decent insurance, ¯\_(ツ)_/¯
posted by Talez at 4:00 PM on August 23, 2017 [4 favorites]
Of course not. But if you have decent insurance they will 5150 you (or your state's equivalent) and demand compliance to your psychiatrist's treatment regime before you get out.
If you don't have decent insurance, ¯\_(ツ)_/¯
posted by Talez at 4:00 PM on August 23, 2017 [4 favorites]
This seems like kind of a no-brainer to me. Why should merely hearing voices telling you to do bad stuff make you dangerous? I hear voices telling me to do things all the time—buy this product, watch this show, vote for this politician. I generally pay them no heed. Why should the source of the voice matter? The test should be whether or not the person feels compelled to obey the voices in their head, not merely whether they hear them. We're talking about taking away someone's agency, denying them control over their own mental state. The bar should be very high.
posted by Anticipation Of A New Lover's Arrival, The at 4:00 PM on August 23, 2017 [15 favorites]
posted by Anticipation Of A New Lover's Arrival, The at 4:00 PM on August 23, 2017 [15 favorites]
nor that we should recognize a "right" to be aggressive and threatening to strangers in public as they unfortunately sometimes are
No one is arguing that. But I think there's an interesting question in - why do we treat people who have 'voices' telling them to do bad things differently, and as inherently more dangerous, as people whose own conscience tells them it's okay to do bad things?
posted by corb at 4:05 PM on August 23, 2017 [13 favorites]
No one is arguing that. But I think there's an interesting question in - why do we treat people who have 'voices' telling them to do bad things differently, and as inherently more dangerous, as people whose own conscience tells them it's okay to do bad things?
posted by corb at 4:05 PM on August 23, 2017 [13 favorites]
I hear voices telling me to do things all the time
Wait--literally?
posted by Joseph Gurl at 4:07 PM on August 23, 2017
Wait--literally?
posted by Joseph Gurl at 4:07 PM on August 23, 2017
Wait--literally?
I think they're referring to Paul Harvey.
posted by Talez at 4:09 PM on August 23, 2017 [3 favorites]
I think they're referring to Paul Harvey.
posted by Talez at 4:09 PM on August 23, 2017 [3 favorites]
Yeah, literally. On the radio, on TV, etc.
posted by Anticipation Of A New Lover's Arrival, The at 4:11 PM on August 23, 2017 [1 favorite]
posted by Anticipation Of A New Lover's Arrival, The at 4:11 PM on August 23, 2017 [1 favorite]
Is that something I'd need to have a radio, TV, etc. to understand?
posted by Joseph Gurl at 4:13 PM on August 23, 2017 [5 favorites]
posted by Joseph Gurl at 4:13 PM on August 23, 2017 [5 favorites]
their advocacy more or less pretends that the more seriously-afflicted sufferers, the ones who genuinely can't function, the ones in severe distress, don't exist.
I think that understates the extent to which 'more severe distress' and 'less severe distress' can coexist in the same person, or how a person can be functioning fine at some things and very badly at other things; like, if I have a panic attack on the bus, most people probably don't assume I'm one of Those Crazy People, but that's only because I wear clean clothes that aren't too stained or worn; outside those markers of relative economic privilege and enough mental health to do a laundry every couple of weeks, there is very little to distinguish me-in-the-midst-of-a-panic-attack from the lady with the cat-pee smell and the unwashed hair.
So my feeling on this is very much informed by the fact that I've been all the way down to genuinely almost not being able to function at all, and at those times I was still a person who needed and wanted and deserved autonomy.
posted by Jeanne at 4:17 PM on August 23, 2017 [21 favorites]
I think that understates the extent to which 'more severe distress' and 'less severe distress' can coexist in the same person, or how a person can be functioning fine at some things and very badly at other things; like, if I have a panic attack on the bus, most people probably don't assume I'm one of Those Crazy People, but that's only because I wear clean clothes that aren't too stained or worn; outside those markers of relative economic privilege and enough mental health to do a laundry every couple of weeks, there is very little to distinguish me-in-the-midst-of-a-panic-attack from the lady with the cat-pee smell and the unwashed hair.
So my feeling on this is very much informed by the fact that I've been all the way down to genuinely almost not being able to function at all, and at those times I was still a person who needed and wanted and deserved autonomy.
posted by Jeanne at 4:17 PM on August 23, 2017 [21 favorites]
I've been multiple my whole life (selves-aware since 1998) and never yet stood on a street corner screaming at people. Perhaps when I retire and have more time on my hands.
I have, however, edited pieces on homelessness and worked in a settlement house-modelled agency providing housing to vulnerable communities which is why I can say that actually, homelessness is very likely to give you a mental illness. I don't deny that mental illness makes people vulnerable to homelessness but the equation goes both ways...and plenty of people are entirely capable of advocating for support for mental health treatment while advocating for their own unique needs.
I also was speaking to a researcher about, oh, 6? Years ago who said people who hear voices and identify as multiple run around 1-3% of the population. If so that's a lot of people not screaming at you. Like me.
posted by warriorqueen at 4:18 PM on August 23, 2017 [55 favorites]
I have, however, edited pieces on homelessness and worked in a settlement house-modelled agency providing housing to vulnerable communities which is why I can say that actually, homelessness is very likely to give you a mental illness. I don't deny that mental illness makes people vulnerable to homelessness but the equation goes both ways...and plenty of people are entirely capable of advocating for support for mental health treatment while advocating for their own unique needs.
I also was speaking to a researcher about, oh, 6? Years ago who said people who hear voices and identify as multiple run around 1-3% of the population. If so that's a lot of people not screaming at you. Like me.
posted by warriorqueen at 4:18 PM on August 23, 2017 [55 favorites]
not good in that many of them seem to feel that their experience of the disorder must be typical and/or are deeply invested in the idea that their disorder is not much of a disorder at all, so that their advocacy more or less pretends that the more seriously-afflicted sufferers, the ones who genuinely can't function, the ones in severe distress, don't exist
If 1 in 8 people experiences hearing a voice or voices, then it would seem far more likely that the typical experience is not that of the nonfunctioning person. The article even quotes a psychology professor who says that hearing voices is "unusual, but is not in itself pathological." Another psychology professor says there is a "big difference" between people who are aware that the voices they hear are internal and those who are not.
Part of the stigma around mental health is the immediate association with "filthy, urine-reeking people ranting at the air." Those may be the most visible people with mental illness, but they don't represent the majority, and I don't think anyone quoted in this article is unaware that such people might exist. The issue at hand is whether these advocates deserve to be treated as if the only thing keeping them from becoming "filthy, ranting people" is a treatment regimen over which they have no control. I think they have a right to say they do not.
posted by shapes that haunt the dusk at 4:22 PM on August 23, 2017 [8 favorites]
If 1 in 8 people experiences hearing a voice or voices, then it would seem far more likely that the typical experience is not that of the nonfunctioning person. The article even quotes a psychology professor who says that hearing voices is "unusual, but is not in itself pathological." Another psychology professor says there is a "big difference" between people who are aware that the voices they hear are internal and those who are not.
Part of the stigma around mental health is the immediate association with "filthy, urine-reeking people ranting at the air." Those may be the most visible people with mental illness, but they don't represent the majority, and I don't think anyone quoted in this article is unaware that such people might exist. The issue at hand is whether these advocates deserve to be treated as if the only thing keeping them from becoming "filthy, ranting people" is a treatment regimen over which they have no control. I think they have a right to say they do not.
posted by shapes that haunt the dusk at 4:22 PM on August 23, 2017 [8 favorites]
Of course they should, and they are able to. I have a current client that is on a less-restrictive order to maintain med compliance, and he's been refusing medication since the day he was released from the hospital. He is still not being forced to take medication and won't be unless the threats he is making daily to female staff are specific and clear, or he kicks in another plate glass window and is involved in a altercation with 12 police officers. He was accused of assaulting them, of course, when they forcibly detained him for the property damage. And even with that trumped up charge hanging over his head he still has the right to refuse medication. This is truly not the battle to fight. Perhaps social pressure for people that are educated and have healthcare makes it frowned upon for certain demographics to decline medication, but I promise the problem isn't forcing people to medicate these symptoms.
warriorqueen is right, and praemanuire is right too but also offensive in their phrasing. The problem we should be addressing is how to avoid the traumatic effect that homelessness has on people, especially the mentally ill. If you know how being tired or hungry or having shoes that don't quite fit just right can exacerbate your own frustrations or anxiety or depression, imagine being schizophrenic and depressed and having been sexually harassed multiple times a day for the past 3 months and wearing the same underwear for 3 days. We truly do not comprehend the effects that constant trauma can have on what would otherwise be a manageable illness.
posted by kittensofthenight at 4:28 PM on August 23, 2017 [45 favorites]
warriorqueen is right, and praemanuire is right too but also offensive in their phrasing. The problem we should be addressing is how to avoid the traumatic effect that homelessness has on people, especially the mentally ill. If you know how being tired or hungry or having shoes that don't quite fit just right can exacerbate your own frustrations or anxiety or depression, imagine being schizophrenic and depressed and having been sexually harassed multiple times a day for the past 3 months and wearing the same underwear for 3 days. We truly do not comprehend the effects that constant trauma can have on what would otherwise be a manageable illness.
posted by kittensofthenight at 4:28 PM on August 23, 2017 [45 favorites]
No one is arguing that. But I think there's an interesting question in - why do we treat people who have 'voices' telling them to do bad things differently, and as inherently more dangerous, as people whose own conscience tells them it's okay to do bad things?
Honestly? I think in part because of the way the medical model of mental health (it's even in the name! I don't have an alternative term besides "the differing ways people cognize and how it affects their functioning") makes it the default thing to take any behavior that's not typical, especially if it can (doesn't have to be 100%, just some chance) impair functioning, or correlates with impaired functioning, and pathologize it. This is why involuntary medication is such a hard call to make, I think --- it surely isn't sufficient or correct to make the question, "would the person consent after the fact," but we also have to place some condition of competency to evaluate whether to accept treatment --- I have to know what I'm refusing for that refusal to be meaningful, I think, and the question is at what level of correctness and specificity.
NB: I love me my psych meds (they're not for voices though --- the only voice in my head is mine and he's a mean SOB) and I have no particular desire to stop taking them and they are a necessary condition for me to behave in not-self-destructive ways --- but they're not a sufficient condition. Moreover, people have to be allowed to choose for themselves what trade-offs to make. I'm lucky, I have good insurance and no side effects, the trade-offs are basically nil. Other people have a different set of trade-offs, and I should be very very reluctant to be so certain that they're not capable of evaluating them meaningfully that I choose for them.
posted by PMdixon at 4:28 PM on August 23, 2017 [6 favorites]
Honestly? I think in part because of the way the medical model of mental health (it's even in the name! I don't have an alternative term besides "the differing ways people cognize and how it affects their functioning") makes it the default thing to take any behavior that's not typical, especially if it can (doesn't have to be 100%, just some chance) impair functioning, or correlates with impaired functioning, and pathologize it. This is why involuntary medication is such a hard call to make, I think --- it surely isn't sufficient or correct to make the question, "would the person consent after the fact," but we also have to place some condition of competency to evaluate whether to accept treatment --- I have to know what I'm refusing for that refusal to be meaningful, I think, and the question is at what level of correctness and specificity.
NB: I love me my psych meds (they're not for voices though --- the only voice in my head is mine and he's a mean SOB) and I have no particular desire to stop taking them and they are a necessary condition for me to behave in not-self-destructive ways --- but they're not a sufficient condition. Moreover, people have to be allowed to choose for themselves what trade-offs to make. I'm lucky, I have good insurance and no side effects, the trade-offs are basically nil. Other people have a different set of trade-offs, and I should be very very reluctant to be so certain that they're not capable of evaluating them meaningfully that I choose for them.
posted by PMdixon at 4:28 PM on August 23, 2017 [6 favorites]
(I somehow left out: The part that the medical model leaves out is exactly the social conditions that kittensofthenight, warriorqueen, et al., are calling out. Isolation and trauma fuck you up, there's a lot of forms of both, and we're coming up with new ones daily)
posted by PMdixon at 4:30 PM on August 23, 2017 [6 favorites]
posted by PMdixon at 4:30 PM on August 23, 2017 [6 favorites]
And just to pop back in between my commute to a busy job, feeding my kids, and going to martial arts to say...you really have no idea how many unmediated people hear voices because most of us know that it's something of a career- and social status-killer and...we're not dumb or out of touch with that. I actually did come out at one workplace in the blush of youthful advocacy and it didn't hold me back, but that was kind of dumb luck.
That said, medication also is fine and you have no idea how many medicated people are around either.
I think people who need help should get it but hearing voices is not inherently that bad, in my experience anyway.
Unfortunately movies and TV have led you to believe you can identify people with voices in their head by their serial killing but it's not that simple. My martial arts academy is no Fight Club even.
I'm also using I loosely, since the people heading to martial arts may or may not be the people who are engaged on Metafilter.
posted by warriorqueen at 4:42 PM on August 23, 2017 [16 favorites]
That said, medication also is fine and you have no idea how many medicated people are around either.
I think people who need help should get it but hearing voices is not inherently that bad, in my experience anyway.
Unfortunately movies and TV have led you to believe you can identify people with voices in their head by their serial killing but it's not that simple. My martial arts academy is no Fight Club even.
I'm also using I loosely, since the people heading to martial arts may or may not be the people who are engaged on Metafilter.
posted by warriorqueen at 4:42 PM on August 23, 2017 [16 favorites]
This was really interesting. One thing that struck me (and I'm not a psychiatrist/psychologist so I'm kinda out of my depth here) was the parallel with mindfulness-based approaches to mental health, where you acknowledge thoughts regardless of their content, but do not necessarily believe or engage them. It makes sense to me that if people can manage to achieve a similar understanding with their voices, i.e., listening without being swept up in what they are saying, that they would improve in mental health regardless of whether the voices go away. I was reminded especially of OCD, where thoughts can be extremely vivid and intrusive, and where in treatment people typically learn not to try to banish those thoughts from their head (which often worsens the problem) but instead to change how they react to them.
posted by en forme de poire at 4:59 PM on August 23, 2017 [3 favorites]
posted by en forme de poire at 4:59 PM on August 23, 2017 [3 favorites]
The more we expand and fuzz out the limits of psychiatric and neurological illnesses, the more the categories pull in people who are well able to function in life. That's good in that they can advocate effectively...but not good in that many of them seem to feel that their experience of the disorder must be typical and/or are deeply invested in the idea that their disorder is not much of a disorder at all, so that their advocacy more or less pretends that the more seriously-afflicted sufferers, the ones who genuinely can't function, the ones in severe distress, don't exist.
This is exactly the same kind of reasoning that gets trotted out against Autistic people who self-advocate, that we're not thinking enough about the "low-functioning" people. Never mind that functioning labels are vastly oversimplifying, that they assume I as a "high-functioning" Autistic never have "low-functioning" moments like going non-verbal or struggling to brush my teeth. (I try to prevent those moments when I can, mostly to take pressure off my wife who then has to shovel me into bed by herself – but still. Sometimes the mind goes blarp and there's little I can do about it. But I digress.)
Which is a very roundabout way to say that disabled people who advocate for their particular flavor of disability (including people with mental illness) do so for everyone that would benefit from that advocacy, "low-functioning" included. We're aware the "severe" cases exist. Sometimes the people on the other end of the monitor are the severe ones! Never assume just because a person can compose an online essay (or a metafilter comment) that we're not also dealing with some capital-S Stuff.
posted by The demon that lives in the air at 4:59 PM on August 23, 2017 [32 favorites]
This is exactly the same kind of reasoning that gets trotted out against Autistic people who self-advocate, that we're not thinking enough about the "low-functioning" people. Never mind that functioning labels are vastly oversimplifying, that they assume I as a "high-functioning" Autistic never have "low-functioning" moments like going non-verbal or struggling to brush my teeth. (I try to prevent those moments when I can, mostly to take pressure off my wife who then has to shovel me into bed by herself – but still. Sometimes the mind goes blarp and there's little I can do about it. But I digress.)
Which is a very roundabout way to say that disabled people who advocate for their particular flavor of disability (including people with mental illness) do so for everyone that would benefit from that advocacy, "low-functioning" included. We're aware the "severe" cases exist. Sometimes the people on the other end of the monitor are the severe ones! Never assume just because a person can compose an online essay (or a metafilter comment) that we're not also dealing with some capital-S Stuff.
posted by The demon that lives in the air at 4:59 PM on August 23, 2017 [32 favorites]
Mod note: Deleted a comment and some replies. Please refresh, folks. Thanks!
posted by restless_nomad (staff) at 5:15 PM on August 23, 2017 [2 favorites]
posted by restless_nomad (staff) at 5:15 PM on August 23, 2017 [2 favorites]
I don't have this sort of problem, but I do have a skin-picking disorder, which is one of those things where I have learned to play it down heavily when dealing with psychiatrists, because I'm able to manage it reasonably well on its own--but I know people who've been put on antipsychotics just for the mostly-cosmetic sake of stopping the impulse. I know it looks kind of gross, and I'd rather not do it, but it doesn't have a huge quality-of-life impact for me at this point, and I've learned to manage it quite well on my own.
I don't blame anybody for being super wary when reporting symptoms for this kind of thing. I want everybody to have great, understanding mental health providers, but antipsychotic medications are some of the worst offenders on side effects, and I don't think the current establishment handles things well where they're an early line of treatment. It's one thing if you're actively dangerous to yourself or anybody else, but that seems to often not be the definition of "severe". I get the feeling that people have a hard time with understanding that any hearing of voices could potentially become a routine non-issue in one's life, but I also think a lot of people don't get that, like, if my arms are only covered with sores for a few days in a given month, eh, I'm doing pretty well and it's fine and I just need to get better at getting enough sleep.
posted by Sequence at 5:33 PM on August 23, 2017 [12 favorites]
I don't blame anybody for being super wary when reporting symptoms for this kind of thing. I want everybody to have great, understanding mental health providers, but antipsychotic medications are some of the worst offenders on side effects, and I don't think the current establishment handles things well where they're an early line of treatment. It's one thing if you're actively dangerous to yourself or anybody else, but that seems to often not be the definition of "severe". I get the feeling that people have a hard time with understanding that any hearing of voices could potentially become a routine non-issue in one's life, but I also think a lot of people don't get that, like, if my arms are only covered with sores for a few days in a given month, eh, I'm doing pretty well and it's fine and I just need to get better at getting enough sleep.
posted by Sequence at 5:33 PM on August 23, 2017 [12 favorites]
>Is that something I'd need to have a radio, TV, etc. to understand?
Possibly, but the larger point stands. People, as a whole, are constantly bombarded by commands to do this, that, and the other. It's an interesting observation in the context of the assumption that the voice automatically become more dangerous when they're merely subjectively real.
Demon that lives in the air, exactly. The way I saw it put, which has stayed with me, is "lack of self-advocacy is used to deny agency; presence of self-advocacy is used to deny support."
posted by a power-tie-wearing she-capitalist at 5:34 PM on August 23, 2017 [5 favorites]
Possibly, but the larger point stands. People, as a whole, are constantly bombarded by commands to do this, that, and the other. It's an interesting observation in the context of the assumption that the voice automatically become more dangerous when they're merely subjectively real.
Demon that lives in the air, exactly. The way I saw it put, which has stayed with me, is "lack of self-advocacy is used to deny agency; presence of self-advocacy is used to deny support."
posted by a power-tie-wearing she-capitalist at 5:34 PM on August 23, 2017 [5 favorites]
I know people who've been put on antipsychotics just for the mostly-cosmetic sake of stopping the impulse. I know it looks kind of gross, and I'd rather not do it, but it doesn't have a huge quality-of-life impact
Yeah, that's a great point (and one I think the article gets at)--shouldn't the pertinent factor be whether or not the "problem" is actually a problem?
posted by Joseph Gurl at 5:37 PM on August 23, 2017 [3 favorites]
Yeah, that's a great point (and one I think the article gets at)--shouldn't the pertinent factor be whether or not the "problem" is actually a problem?
posted by Joseph Gurl at 5:37 PM on August 23, 2017 [3 favorites]
Hearing voices (usually single words) as you fall asleep is extremely common.
In fact, hearing voices is not at all the same as schizophrenia. See this NYT article by Oliver Sacks. He has a related book.
Medication for schizophrenia has more or less side effects (tremors, sleepiness, weight gain, ... I'm thinking Haloperidol), and in general dulls the mind a lot.
No wonder sometimes people prefer to go off the medication, but the couple of acquaintances I have seen do that have not fared well until they took them again. Schizophrenia itself is also very limiting, it goes way beyond hearing voices, and seems to imbue the external world with random hidden meaning (based on my size 2 cohort anecdotal evidence).
As far as the stigma: in most European countries, the "reeking, waving madman" is not as prevalent as in the USA, so people latch more on the occasional media-magnified murder.
posted by haemanu at 5:47 PM on August 23, 2017 [9 favorites]
In fact, hearing voices is not at all the same as schizophrenia. See this NYT article by Oliver Sacks. He has a related book.
Medication for schizophrenia has more or less side effects (tremors, sleepiness, weight gain, ... I'm thinking Haloperidol), and in general dulls the mind a lot.
No wonder sometimes people prefer to go off the medication, but the couple of acquaintances I have seen do that have not fared well until they took them again. Schizophrenia itself is also very limiting, it goes way beyond hearing voices, and seems to imbue the external world with random hidden meaning (based on my size 2 cohort anecdotal evidence).
As far as the stigma: in most European countries, the "reeking, waving madman" is not as prevalent as in the USA, so people latch more on the occasional media-magnified murder.
posted by haemanu at 5:47 PM on August 23, 2017 [9 favorites]
Haloperidol
In my experience, only people who have been on Haldol since the seventies and eighties and like it are still on it. We're on the fourth or fifth generation of psychiatric meds now, with ones trying to target Gaba along with the traditional Dopamine and Serotonin. That being said, I've yet to run into a client who heard voices that I could track based on their reports whose medications did anything more than make it easier to ignore them. Ditto for delusions - if they were externally trackable, medications made them less insistent but no less existent.
posted by Deoridhe at 6:11 PM on August 23, 2017 [6 favorites]
In my experience, only people who have been on Haldol since the seventies and eighties and like it are still on it. We're on the fourth or fifth generation of psychiatric meds now, with ones trying to target Gaba along with the traditional Dopamine and Serotonin. That being said, I've yet to run into a client who heard voices that I could track based on their reports whose medications did anything more than make it easier to ignore them. Ditto for delusions - if they were externally trackable, medications made them less insistent but no less existent.
posted by Deoridhe at 6:11 PM on August 23, 2017 [6 favorites]
I've taken the Minnesota Multiphasic Personality Inventory a couple of times, both for employment offer evaluations. Both times I was presented with the question: True or False: Sometimes I hear voices calling my name.
Now, you know what, that is TRUE. Sometimes I hear the voices of my FRIENDS calling my name as I walk into the venue where we are to meet and I am looking around for them.
Also, my name is Jane. Anyone yelling in the street "Hey!" or ANY other single syllable word with a long A often sounds to me like my name. (It's taken years, but I mostly have learned to ignore this).
Is it my imagination, however, that if I had answered "True", I would have been marked as a scary unemployable hallucinator?
Also, in the last few... months? maybe as much as a year? I have actually heard whispers in the back of my head. I think it is my brain taking ambient noise and trying to interpret it as language, but I think it would be so easy to believe whatever it's saying. I don't, but I attribute that to my many years of meditation practice, which has given me a solid understanding that the role of the mind is to create thoughts and I have no obligation to believe the thoughts just because they are in my head.
Oh one more thing. I was surprised not to see Elyn Saks quoted in the article, in part because she has spent many years writing about the rights of the mentally ill. I was privileged to have her as a professor when I was in law school, prior to her public revelation that she herself is schizophrenic. It's funny how few of my law professors remain vivid in my mind, but she always has and I'm so happy whenever I see her receive acclaim.
posted by janey47 at 6:47 PM on August 23, 2017 [9 favorites]
Now, you know what, that is TRUE. Sometimes I hear the voices of my FRIENDS calling my name as I walk into the venue where we are to meet and I am looking around for them.
Also, my name is Jane. Anyone yelling in the street "Hey!" or ANY other single syllable word with a long A often sounds to me like my name. (It's taken years, but I mostly have learned to ignore this).
Is it my imagination, however, that if I had answered "True", I would have been marked as a scary unemployable hallucinator?
Also, in the last few... months? maybe as much as a year? I have actually heard whispers in the back of my head. I think it is my brain taking ambient noise and trying to interpret it as language, but I think it would be so easy to believe whatever it's saying. I don't, but I attribute that to my many years of meditation practice, which has given me a solid understanding that the role of the mind is to create thoughts and I have no obligation to believe the thoughts just because they are in my head.
Oh one more thing. I was surprised not to see Elyn Saks quoted in the article, in part because she has spent many years writing about the rights of the mentally ill. I was privileged to have her as a professor when I was in law school, prior to her public revelation that she herself is schizophrenic. It's funny how few of my law professors remain vivid in my mind, but she always has and I'm so happy whenever I see her receive acclaim.
posted by janey47 at 6:47 PM on August 23, 2017 [9 favorites]
[...] one theory holds that the phenomenon appears to be similar to the self-talk that everyone does.
This bit just isn't true. The subject came up on Metatalk once and I was relieved to hear that I'm not the only person that doesn't have an interior monologue. I think I've had brief (e.g., single word) hypnogogic hallucinations a few times, but I do not have internal conversations or monologues or hear a "voice in my head" and I have no idea what I'd do if I did.
posted by Joe in Australia at 7:47 PM on August 23, 2017 [5 favorites]
This bit just isn't true. The subject came up on Metatalk once and I was relieved to hear that I'm not the only person that doesn't have an interior monologue. I think I've had brief (e.g., single word) hypnogogic hallucinations a few times, but I do not have internal conversations or monologues or hear a "voice in my head" and I have no idea what I'd do if I did.
posted by Joe in Australia at 7:47 PM on August 23, 2017 [5 favorites]
So, I went to grad school with a guy who had severe mental issues and was on medication that let him function enough to do ok in school, go to parties etc. I liked him quite a bit actually. In his second year he decided to go off his meds and since he was an adult no one really pushed him about it. He started showing up to school and staring at people weird, and telling people in class he could read the professors' minds and stuff. Then one day he walked down the street and started killing people with a rifle . Some of my friends cowered in terror on people's porches and luckily survived. The shooter was a very nice, mellow guy. But he needed his meds and imo he needed someone to check in with and report him to family or someone when he went off them. I know this is a very unusual anecdote but he was definitely not someone who should have made his own choices about whether he wanted meds.
In my own case I was on antidepressants for a long time and hated them but they helped me and I eventuallly was able to get off them by getting a more stable living situation and more exercise, healthy choices etc.
I guess the problem is that it's not always easy for the patient or others to tell which is scenario A and which is scenario B ahead of time.
posted by freecellwizard at 8:16 PM on August 23, 2017 [13 favorites]
In my own case I was on antidepressants for a long time and hated them but they helped me and I eventuallly was able to get off them by getting a more stable living situation and more exercise, healthy choices etc.
I guess the problem is that it's not always easy for the patient or others to tell which is scenario A and which is scenario B ahead of time.
posted by freecellwizard at 8:16 PM on August 23, 2017 [13 favorites]
After more than a decade of taking medications and cycling in and out of mental hospitals, Waddingham has embraced a new way of thinking about her voices. She no longer tries to banish them with drugs, but accepts them as a part of herself. She now considers them a reflection of her feelings and experiences, signals that help her understand when and why she feels overwhelmed — rather than authorities whose commands she should follow.
This kind of treatment response, the development or recovery of insight (or a blend of the metacognitive capacity for self-monitoring, reality testing, and social saliency), is possibly one of the most important goals of the psychiatric treatment of a psychotic disorder and is one of the strongest correlates of continuing remission of the most disabling symptomology and retention of functional abilities. Schizophrenia is not a singular disease but a collection of several dozen if not several hundred different pathological processes. Some manifest early and are rapidly progressing, some demonstrate a relapsing-remitting course more similar to MS, and some have a very late and more indolent course than others. Some benefit from medications to induce and maintain the remission/reduction of positive symptomology, whereas other forms sometimes seem to benefit distressingly little from any particular medication. Some people can get by reasonably well with little or no medications for significant periods of time, but in my experience this is rare for those with a heavy disease burden. Having said that, I have sometimes treated in talk therapy people with mild or indolent psychotic disorders who were sometimes on little or no medications for a prolonged period of time. In my experience many (but not all of them), often resumed medication, sometimes after periods of months or years, when their symptoms or stressors became again intolerable (and for how long the resumption lasts is very individualized). I've treated people with chronic hallucinations, paranoia and delusions of reference who nonetheless manage to hold down stressful jobs and have never been hospitalized (though rare, these people demonstrated quite good insight and/or had quite strong family or friend networks). Overall though, accepting that every person has a unique illness profile and treatment response, I haven't seen any outcome studies that disprove large studies such as FIN11, which show a distinct reduction in mortality for people with chronic psychotic illness who are adherent with recommended medication treatment.
posted by meehawl at 8:49 PM on August 23, 2017 [9 favorites]
This kind of treatment response, the development or recovery of insight (or a blend of the metacognitive capacity for self-monitoring, reality testing, and social saliency), is possibly one of the most important goals of the psychiatric treatment of a psychotic disorder and is one of the strongest correlates of continuing remission of the most disabling symptomology and retention of functional abilities. Schizophrenia is not a singular disease but a collection of several dozen if not several hundred different pathological processes. Some manifest early and are rapidly progressing, some demonstrate a relapsing-remitting course more similar to MS, and some have a very late and more indolent course than others. Some benefit from medications to induce and maintain the remission/reduction of positive symptomology, whereas other forms sometimes seem to benefit distressingly little from any particular medication. Some people can get by reasonably well with little or no medications for significant periods of time, but in my experience this is rare for those with a heavy disease burden. Having said that, I have sometimes treated in talk therapy people with mild or indolent psychotic disorders who were sometimes on little or no medications for a prolonged period of time. In my experience many (but not all of them), often resumed medication, sometimes after periods of months or years, when their symptoms or stressors became again intolerable (and for how long the resumption lasts is very individualized). I've treated people with chronic hallucinations, paranoia and delusions of reference who nonetheless manage to hold down stressful jobs and have never been hospitalized (though rare, these people demonstrated quite good insight and/or had quite strong family or friend networks). Overall though, accepting that every person has a unique illness profile and treatment response, I haven't seen any outcome studies that disprove large studies such as FIN11, which show a distinct reduction in mortality for people with chronic psychotic illness who are adherent with recommended medication treatment.
posted by meehawl at 8:49 PM on August 23, 2017 [9 favorites]
freecallwizard: something similar happened to a friend of mine. He didn't shoot anyone up (phew) but he did threaten me remotely and (semi) anonymously for a few months, and his "break" was correlated with his decision to stop taking his antipsychotic medications. It was pretty frightening.
posted by Joseph Gurl at 9:16 PM on August 23, 2017 [1 favorite]
posted by Joseph Gurl at 9:16 PM on August 23, 2017 [1 favorite]
(Just to be clear: I have no idea if he was hearing voices or anything like that. I just know that he probably shouldn't have been making his own medication decisions.)
posted by Joseph Gurl at 9:17 PM on August 23, 2017
posted by Joseph Gurl at 9:17 PM on August 23, 2017
Deoridhe, great to hear that newer medications have improved with respect to Haloperidol. At the time, the only choice seemed to take too much away.
I wonder what are the side effects for the newer medications, since patients still sometimes would rather skip the medication when they feel their symptoms coming back.
posted by haemanu at 9:25 PM on August 23, 2017
I wonder what are the side effects for the newer medications, since patients still sometimes would rather skip the medication when they feel their symptoms coming back.
posted by haemanu at 9:25 PM on August 23, 2017
Well, the article does mention "such as significant weight gain that can lead to diabetes"
posted by haemanu at 9:28 PM on August 23, 2017
posted by haemanu at 9:28 PM on August 23, 2017
The threat of commital has been known to shock people into taking their meds, to the relief of all.
posted by No Robots at 9:49 PM on August 23, 2017 [1 favorite]
posted by No Robots at 9:49 PM on August 23, 2017 [1 favorite]
One thing that struck me . . . was the parallel with mindfulness-based approaches to mental health, where you acknowledge thoughts regardless of their content, but do not necessarily believe or engage them. It makes sense to me that if people can manage to achieve a similar understanding with their voices, i.e., listening without being swept up in what they are saying, that they would improve in mental health regardless of whether the voices go away.
This resonates with me. I'm bipolar, and while I stay on an even keel with meds, I've gone back to cycling between mania and depression in the past few months. Right now, I'm coming down off of a manic episode (and not even the fun type of mania where I get shit done but the irritating type where I feel like ants are crawling under my skin), and so I know I'm probably going to be laying in bed in a dark room for the weekend.
But even though I'll be going through a depression, I'm not worried about my overall outlook because I know it's part of the process. I call it "mood flu," and I am lucky enough to have a good support system* that will bring me food, make sure I bathe, and keep my life going for me until I am ready to rejoin it. I'm really not looking forward to this, or any depressive episodes, but being able to distance myself from my emotional state - that my feelings are not me but are probably the result of a screwed-up serotonin regulatory system - keep me from feeling like I have to medicate myself into oblivion.
(*Support systems are essential for anyone living with depression, and I do not want to come off as glib about my disorder.)
posted by bibliowench at 9:52 PM on August 23, 2017 [7 favorites]
This resonates with me. I'm bipolar, and while I stay on an even keel with meds, I've gone back to cycling between mania and depression in the past few months. Right now, I'm coming down off of a manic episode (and not even the fun type of mania where I get shit done but the irritating type where I feel like ants are crawling under my skin), and so I know I'm probably going to be laying in bed in a dark room for the weekend.
But even though I'll be going through a depression, I'm not worried about my overall outlook because I know it's part of the process. I call it "mood flu," and I am lucky enough to have a good support system* that will bring me food, make sure I bathe, and keep my life going for me until I am ready to rejoin it. I'm really not looking forward to this, or any depressive episodes, but being able to distance myself from my emotional state - that my feelings are not me but are probably the result of a screwed-up serotonin regulatory system - keep me from feeling like I have to medicate myself into oblivion.
(*Support systems are essential for anyone living with depression, and I do not want to come off as glib about my disorder.)
posted by bibliowench at 9:52 PM on August 23, 2017 [7 favorites]
But if you have decent insurance they will 5150 you (or your state's equivalent) and demand compliance to your psychiatrist's treatment regime before you get out.
No? I can only take it you've never had to deal with a friend or a relative struggling with psychosis. Even with recent liberalization of certain state laws in provision for mandated outpatient treatment (e.g., Kendra's Law in NY), it's still quite challenging to get people who aren't openly threatening harm at the moment an involuntary medication order. Read the summary of the criteria at that link and you'll see that merely hearing voices, or even hearing voices and experiencing subjective distress at them, would not even get you mandated outpatient treatment. (*) So in the U.S., at least, in practice, unless you are at that level, you can always direct your treatment as an adult by simply refusing to comply with a medication regimen. I think probably the better framing of the article would have been "are there alternatives to psychiatric medication which could be used to successfully treat a significant portion of the population whose functioning is meaningfully impaired or who feel seriously distressed by hearing voices?" And there probably are, for at least some people; the side effects of the drugs are certainly serious enough that it's always something worth considering; but there's very real risk involved in forgoing medication when, if you misjudge, you could end up "involuntarily noncompliant" and unable to look after yourself. Dismantling frameworks of care for the mentally ill has not, historically, been done in such a way as to simultaneously improve treatment; instead, we've substituted neglect for some portion of abuse (and then usually pick up the abuse on the back end again in dealing with the resulting crisis).
And of course lack of social support and mental illness have a fiendish synergy. But I'm not sure I see how being more positive about different treatments gives us the world in which people in the screaming-at-strangers condition get the intensive support that might make it easier for (many of) them to stabilize and function.
* It's a really difficult set of competing interests to balance. I'm not sure I could make the laws any better. But then I'm not sure the people who fall through the cracks have been done right by, either. The people who get to be captive audiences on subways probably have the least weighty interests here, but they're not negligible.
posted by praemunire at 10:30 PM on August 23, 2017 [7 favorites]
No? I can only take it you've never had to deal with a friend or a relative struggling with psychosis. Even with recent liberalization of certain state laws in provision for mandated outpatient treatment (e.g., Kendra's Law in NY), it's still quite challenging to get people who aren't openly threatening harm at the moment an involuntary medication order. Read the summary of the criteria at that link and you'll see that merely hearing voices, or even hearing voices and experiencing subjective distress at them, would not even get you mandated outpatient treatment. (*) So in the U.S., at least, in practice, unless you are at that level, you can always direct your treatment as an adult by simply refusing to comply with a medication regimen. I think probably the better framing of the article would have been "are there alternatives to psychiatric medication which could be used to successfully treat a significant portion of the population whose functioning is meaningfully impaired or who feel seriously distressed by hearing voices?" And there probably are, for at least some people; the side effects of the drugs are certainly serious enough that it's always something worth considering; but there's very real risk involved in forgoing medication when, if you misjudge, you could end up "involuntarily noncompliant" and unable to look after yourself. Dismantling frameworks of care for the mentally ill has not, historically, been done in such a way as to simultaneously improve treatment; instead, we've substituted neglect for some portion of abuse (and then usually pick up the abuse on the back end again in dealing with the resulting crisis).
And of course lack of social support and mental illness have a fiendish synergy. But I'm not sure I see how being more positive about different treatments gives us the world in which people in the screaming-at-strangers condition get the intensive support that might make it easier for (many of) them to stabilize and function.
* It's a really difficult set of competing interests to balance. I'm not sure I could make the laws any better. But then I'm not sure the people who fall through the cracks have been done right by, either. The people who get to be captive audiences on subways probably have the least weighty interests here, but they're not negligible.
posted by praemunire at 10:30 PM on August 23, 2017 [7 favorites]
The subject came up on Metatalk once and I was relieved to hear that I'm not the only person that doesn't have an interior monologue. I think I've had brief (e.g., single word) hypnogogic hallucinations a few times, but I do not have internal conversations or monologues or hear a "voice in my head" and I have no idea what I'd do if I did.
This is very interesting to me because I experience the inside of my head verbally--it's almost always words in there. And I routinely, when alone, externalize the words, which is to say, I talk to myself but it's more like I'm talking to someone who isn't there. It's how I think about things and process them, and it's also an important step in my writing. It's fascinating to think of someone's internal experience being so different.
This is not about words in my head, but I've been very lucky to have therapists who use a very functional model when thinking about whether something needs treatment. I have compulsive counting rituals, and they interfere with my life not at all, and when I've brought them up with therapists that has always been the central question when considering whether we should do any work to reduce them.
I also have a chronic illness, and the reality of it is that navigating through many meds on essentially a trial-and-error basis to find what helps, and making constant decisions about whether the benefit of any given drug or combination of drugs outweighs the side effects. Again, here, the best doctors I've worked with are the ones who understand that ultimately it is a patient's decision whether to accept a particular medication or not, that a side effect one person can live with comfortably is a deal-breaker for another.
I recently read an article about the question of euthanasia for people with debilitating chronic ailments that aren't fatal. In dark times, when the pain is really bad and has been for awhile--awhile as in "years of severe daily pain"--I google with kind of thing. One ethicist argued that by virtue of the brain changes brought about by chronic pain, people with chronic pain were ipso facto incompetent to participate in this kind of decision, and therefore under no circumstances should euthanasia be extended to patients with chronic pain. I imagine people dealing with mental health issues come up against this kind of thinking all the time, that their condition automatically makes them incompetent to make decisions about the treatment of their condition.
posted by Orlop at 10:48 PM on August 23, 2017 [5 favorites]
This is very interesting to me because I experience the inside of my head verbally--it's almost always words in there. And I routinely, when alone, externalize the words, which is to say, I talk to myself but it's more like I'm talking to someone who isn't there. It's how I think about things and process them, and it's also an important step in my writing. It's fascinating to think of someone's internal experience being so different.
This is not about words in my head, but I've been very lucky to have therapists who use a very functional model when thinking about whether something needs treatment. I have compulsive counting rituals, and they interfere with my life not at all, and when I've brought them up with therapists that has always been the central question when considering whether we should do any work to reduce them.
I also have a chronic illness, and the reality of it is that navigating through many meds on essentially a trial-and-error basis to find what helps, and making constant decisions about whether the benefit of any given drug or combination of drugs outweighs the side effects. Again, here, the best doctors I've worked with are the ones who understand that ultimately it is a patient's decision whether to accept a particular medication or not, that a side effect one person can live with comfortably is a deal-breaker for another.
I recently read an article about the question of euthanasia for people with debilitating chronic ailments that aren't fatal. In dark times, when the pain is really bad and has been for awhile--awhile as in "years of severe daily pain"--I google with kind of thing. One ethicist argued that by virtue of the brain changes brought about by chronic pain, people with chronic pain were ipso facto incompetent to participate in this kind of decision, and therefore under no circumstances should euthanasia be extended to patients with chronic pain. I imagine people dealing with mental health issues come up against this kind of thinking all the time, that their condition automatically makes them incompetent to make decisions about the treatment of their condition.
posted by Orlop at 10:48 PM on August 23, 2017 [5 favorites]
I had such an encounter just last night, when walking by someone on the street and glancing at her because she was partially bent over as if she might be in stomach or chest pain was enough to set off a string of profane threats. Just threats, and I didn't engage...but whose life is made better by her being unmedicated?
It sounds almost like you think her angry reaction to a stranger's look is the thing that should be medicated by an outside agent, not the severe stomach or chest pain you may have accurately observed. that's weird. why not ask instead, "whose life is made better by her inability to access free medical care?" Because the way you put it is what I'd say if I knew she'd already had her shot at competent doctoring and said No to it, so that the only choice now is between letting her roam free and forcing drugs into her.
and that's possible. it's possible that in the past she's been accurately diagnosed, offered free antipsychotic medication with no excruciating side effects, and refused to take it. it's possible that her ailment is schizophrenia, and not temporary drug-induced psychosis or extreme bad temper caused by the pain of untreated stomach cancer, or regular bad temper caused by indigestion plus homelessness and sleeplessness. nobody could know that from a brief encounter, not even a psychiatrist, not even a good psychiatrist. but it could be.
I was attacked by a crazy [1] woman at work once and got dragged down to testify for a commitment hearing that never happened because she agreed to enter the hospital before witnesses were called. I would certainly have given evidence that she was a danger to others if I'd had the chance, because she was. I am in favor of temporarily abrogating people's civil rights when they attempt to hurt me physically. But in general, it is for all of us and especially all parts of the health industry to make voluntary, consented-to, sought-after care available, accessible, and much much much better in quality across the board. especially the quality part. especially in mental health. antipsychotics will do a lot to quiet down difficult people regardless of the nature of the difficulty. some doctors are fairly open about their usefulness for that purpose. the security of not belonging to a perceived "difficult" population should not be a factor in people's opinions about how easy it should be to forcibly drug someone, but I think that it often is.
[1] I choose to call it that not to be offensive, but because she was out of her mind and I don't know why, specifically, and won't claim I do. I was in no position to tell delusions from hallucinations from meth excitement at the time.
posted by queenofbithynia at 10:52 PM on August 23, 2017 [3 favorites]
It sounds almost like you think her angry reaction to a stranger's look is the thing that should be medicated by an outside agent, not the severe stomach or chest pain you may have accurately observed. that's weird. why not ask instead, "whose life is made better by her inability to access free medical care?" Because the way you put it is what I'd say if I knew she'd already had her shot at competent doctoring and said No to it, so that the only choice now is between letting her roam free and forcing drugs into her.
and that's possible. it's possible that in the past she's been accurately diagnosed, offered free antipsychotic medication with no excruciating side effects, and refused to take it. it's possible that her ailment is schizophrenia, and not temporary drug-induced psychosis or extreme bad temper caused by the pain of untreated stomach cancer, or regular bad temper caused by indigestion plus homelessness and sleeplessness. nobody could know that from a brief encounter, not even a psychiatrist, not even a good psychiatrist. but it could be.
I was attacked by a crazy [1] woman at work once and got dragged down to testify for a commitment hearing that never happened because she agreed to enter the hospital before witnesses were called. I would certainly have given evidence that she was a danger to others if I'd had the chance, because she was. I am in favor of temporarily abrogating people's civil rights when they attempt to hurt me physically. But in general, it is for all of us and especially all parts of the health industry to make voluntary, consented-to, sought-after care available, accessible, and much much much better in quality across the board. especially the quality part. especially in mental health. antipsychotics will do a lot to quiet down difficult people regardless of the nature of the difficulty. some doctors are fairly open about their usefulness for that purpose. the security of not belonging to a perceived "difficult" population should not be a factor in people's opinions about how easy it should be to forcibly drug someone, but I think that it often is.
[1] I choose to call it that not to be offensive, but because she was out of her mind and I don't know why, specifically, and won't claim I do. I was in no position to tell delusions from hallucinations from meth excitement at the time.
posted by queenofbithynia at 10:52 PM on August 23, 2017 [3 favorites]
Do patients who hear voices have the right to refuse psychiatric medicine?
The default answer should be "yes, of course". This could be followed by specific exceptions, e.g., when they are a danger to themselves or others.
I am aware that there have been incredible advances regarding mental health treatment since I worked in social services in the 1970s. At the same time, more than any other field of medicine, psychiatric diagnoses are still based on subjective interpretation of what doctors observe and patients report. There is a whole lot of flying-by-the-seat-of-the-pants going on. One would have to be blinded by hubris to mandate treatment under these circumstances.
posted by she's not there at 11:36 PM on August 23, 2017 [1 favorite]
The default answer should be "yes, of course". This could be followed by specific exceptions, e.g., when they are a danger to themselves or others.
I am aware that there have been incredible advances regarding mental health treatment since I worked in social services in the 1970s. At the same time, more than any other field of medicine, psychiatric diagnoses are still based on subjective interpretation of what doctors observe and patients report. There is a whole lot of flying-by-the-seat-of-the-pants going on. One would have to be blinded by hubris to mandate treatment under these circumstances.
posted by she's not there at 11:36 PM on August 23, 2017 [1 favorite]
This bit just isn't true. The subject came up on Metatalk once and I was relieved to hear that I'm not the only person that doesn't have an interior monologue. I think I've had brief (e.g., single word) hypnogogic hallucinations a few times, but I do not have internal conversations or monologues or hear a "voice in my head" and I have no idea what I'd do if I did.
I do wonder if your situation is like mine with aphantasia. I think, on occasion, I've "seen" a color in my head, but other than that, I have no "mind's eye." I can't picture anything. And the way most of you talk about the phenomenon, it sounds like you're all hallucinating. But I can hear an orchestra in my head on command, and my thoughts are in spoken words, for the most part. I don't have numbers for not having an internal voice, but it appears around 2% of us might have aphantasia.
Basically, I think different brains are different.
And I want to say thanks for the comments here. I learned a lot about mental health and agency in this thread.
posted by greermahoney at 12:00 AM on August 24, 2017 [4 favorites]
I do wonder if your situation is like mine with aphantasia. I think, on occasion, I've "seen" a color in my head, but other than that, I have no "mind's eye." I can't picture anything. And the way most of you talk about the phenomenon, it sounds like you're all hallucinating. But I can hear an orchestra in my head on command, and my thoughts are in spoken words, for the most part. I don't have numbers for not having an internal voice, but it appears around 2% of us might have aphantasia.
Basically, I think different brains are different.
And I want to say thanks for the comments here. I learned a lot about mental health and agency in this thread.
posted by greermahoney at 12:00 AM on August 24, 2017 [4 favorites]
Thanks for the post, Joseph Gurl, it's a really interesting article with good references.
Probably, this is something that is maybe not entirely comparable across different countries, because there are very different social, medical and cultural practices. When I worked with homeless people back in 2005, nearly all homeless in Denmark had severe mental health problems and were unable to live in homes because of their illness. Very often their diagnosis was schizophrenia. For them, their illness went before the homelessness because back then, Denmark's social system was constructed in a way that almost everyone could get a home, and the municipality and healthcare services were trying to treat people in the streets in order to get them well enough to get them in homes, for better treatment. In the streets, you can't use medicine. Today, post recession and refugee crisis, we have a situation more comparable to that in the US or UK with thousands of homeless poor, some of whom become ill from struggling with their squalor. But the homeless I met back then are still there (if they are alive), now almost invisible among the new inhabitants of streets and parks. I wonder how the situation is in The Netherlands? While people often imagine The Netherlands as something similar to Scandinavia, there are profound differences in the way social issues and healthcare are discussed.
The attitude to medicinal treatment is different in different countries, and it changes over time. Italian psychiatrists were once known for experimenting with less medicine in response to a very strong anti-psychiatry movement in Italy, but they could also work with very strong family support structures. I haven't yet revisited the Italian situation, but I wonder if it has changed as families have changed? In Brazil, Adalbert Barreto is doing amazing work (link is the best I could find in English).
What I am hearing in general, across countries, is that psychiatric care is under-funded and medicine is too often used as a replacement for care rather than as part of a holistic treatment.
posted by mumimor at 12:23 AM on August 24, 2017 [7 favorites]
Probably, this is something that is maybe not entirely comparable across different countries, because there are very different social, medical and cultural practices. When I worked with homeless people back in 2005, nearly all homeless in Denmark had severe mental health problems and were unable to live in homes because of their illness. Very often their diagnosis was schizophrenia. For them, their illness went before the homelessness because back then, Denmark's social system was constructed in a way that almost everyone could get a home, and the municipality and healthcare services were trying to treat people in the streets in order to get them well enough to get them in homes, for better treatment. In the streets, you can't use medicine. Today, post recession and refugee crisis, we have a situation more comparable to that in the US or UK with thousands of homeless poor, some of whom become ill from struggling with their squalor. But the homeless I met back then are still there (if they are alive), now almost invisible among the new inhabitants of streets and parks. I wonder how the situation is in The Netherlands? While people often imagine The Netherlands as something similar to Scandinavia, there are profound differences in the way social issues and healthcare are discussed.
The attitude to medicinal treatment is different in different countries, and it changes over time. Italian psychiatrists were once known for experimenting with less medicine in response to a very strong anti-psychiatry movement in Italy, but they could also work with very strong family support structures. I haven't yet revisited the Italian situation, but I wonder if it has changed as families have changed? In Brazil, Adalbert Barreto is doing amazing work (link is the best I could find in English).
What I am hearing in general, across countries, is that psychiatric care is under-funded and medicine is too often used as a replacement for care rather than as part of a holistic treatment.
posted by mumimor at 12:23 AM on August 24, 2017 [7 favorites]
Why should merely hearing voices telling you to do bad stuff make you dangerous?
I can only guess you've never been close to anyone having a bad schizophrenic break. It's not just dangerous but terrified, tormented, and seeing the world burn around them and feeling as though all the people around them were zombie chimaeras. If love and support could have made our relative better they would never have been sick in the first place. It was actually really alarming, being a bit detached from the situation, seeing the close siblings (and their little kids) interacting with their relative who perceived them as encroaching monsters.
posted by glasseyes at 1:37 AM on August 24, 2017 [4 favorites]
I can only guess you've never been close to anyone having a bad schizophrenic break. It's not just dangerous but terrified, tormented, and seeing the world burn around them and feeling as though all the people around them were zombie chimaeras. If love and support could have made our relative better they would never have been sick in the first place. It was actually really alarming, being a bit detached from the situation, seeing the close siblings (and their little kids) interacting with their relative who perceived them as encroaching monsters.
posted by glasseyes at 1:37 AM on August 24, 2017 [4 favorites]
I was surprised that this article didn't raise the extreme cross-cultural differences in how voices manifest.
posted by showbiz_liz at 4:32 AM on August 24, 2017 [4 favorites]
posted by showbiz_liz at 4:32 AM on August 24, 2017 [4 favorites]
The author of that article also wrote a fascinating article on the Hearing Voices movement in 2012
posted by showbiz_liz at 4:40 AM on August 24, 2017 [2 favorites]
posted by showbiz_liz at 4:40 AM on August 24, 2017 [2 favorites]
But he needed his meds and imo he needed someone to check in with and report him to family or someone when he went off them. I know this is a very unusual anecdote but he was definitely not someone who should have made his own choices about whether he wanted meds.
I'm so sorry that happened to you, and for other people in the thread who have experienced the tragedy of watching someone who needs medication to stay at all stable not take it. That's legit.
I personally believe (and experience) that "hearing voices" on its own is an insufficient marker for psychosis, and additionally there's a difference between internal experience and external behaviour. But I would definitely not argue that there is never a time for forced medication, just that it's a pretty high bar. Also there are a lot of misconceptions which I think the article does a great job in addressing.
I also wanted to drop into this thread this fairly recent article published in the Harvard Review of Psychiatry about DID myths just for anyone who is interested in the view that people who say they are hearing voices are de facto making it up.
posted by warriorqueen at 7:39 AM on August 24, 2017 [2 favorites]
I'm so sorry that happened to you, and for other people in the thread who have experienced the tragedy of watching someone who needs medication to stay at all stable not take it. That's legit.
I personally believe (and experience) that "hearing voices" on its own is an insufficient marker for psychosis, and additionally there's a difference between internal experience and external behaviour. But I would definitely not argue that there is never a time for forced medication, just that it's a pretty high bar. Also there are a lot of misconceptions which I think the article does a great job in addressing.
I also wanted to drop into this thread this fairly recent article published in the Harvard Review of Psychiatry about DID myths just for anyone who is interested in the view that people who say they are hearing voices are de facto making it up.
posted by warriorqueen at 7:39 AM on August 24, 2017 [2 favorites]
I wanted to add two comments that might contribute to the conversation, or just as information:
1) The new antipsychotic medications, commonly called "atypicals" or second generation antipsychotics (SGAs), are not any better than the older medications. They are not better at symptom control, not more tolerable, and have a different (not better) side effect profile. (See the NIMH CATIE study, which was a huge study designed to assess whether SGAs were better than FGAs)
2) Also per the CATIE study, the big finding from the study was actually that the vast vast majority of people (75%) prescribed antipsychotics don't take them for very long before discontinuing.
Oh, a third:
John Nash didn't take medications and recovered from his schizophrenia without them.
posted by OmieWise at 8:18 AM on August 24, 2017 [8 favorites]
1) The new antipsychotic medications, commonly called "atypicals" or second generation antipsychotics (SGAs), are not any better than the older medications. They are not better at symptom control, not more tolerable, and have a different (not better) side effect profile. (See the NIMH CATIE study, which was a huge study designed to assess whether SGAs were better than FGAs)
2) Also per the CATIE study, the big finding from the study was actually that the vast vast majority of people (75%) prescribed antipsychotics don't take them for very long before discontinuing.
Oh, a third:
John Nash didn't take medications and recovered from his schizophrenia without them.
In a 2009 al-Jazeera interview with a journalist, Riz Khan, Nash expressed some reservations about the way in which his life was portrayed in A Beautiful Mind. Most significantly, he objected to the fact that in the film he is shown as remaining on medication. Indeed, in a scene set around the time of his Nobel nomination in 1994, Nash’s character, played by Russell Crowe, explicitly credits his recovery, at least in part, to newer medication. The truth is that Nash stopped taking any medication in 1970. The line is a fabrication, and a conscious one.Medications are not the only form of treatment.
posted by OmieWise at 8:18 AM on August 24, 2017 [8 favorites]
I wonder what are the side effects for the newer medications, since patients still sometimes would rather skip the medication when they feel their symptoms coming back.
Medication compliance is tricky. Even with medication that produces little or no side effects, people will want to stop. I know I've wanted to stop meds that seem to only have positive benefits. Because who wants to take another pill, right? If someone is feeling "better" due to the medication, they often think they no longer need said medication. Flawed thinking, of course. Throw in the moralizing around medication and nobody wants to take their meds. I can't imagine people taking anti-psychotic medication are any different.
posted by [insert clever name here] at 8:24 AM on August 24, 2017 [1 favorite]
Medication compliance is tricky. Even with medication that produces little or no side effects, people will want to stop. I know I've wanted to stop meds that seem to only have positive benefits. Because who wants to take another pill, right? If someone is feeling "better" due to the medication, they often think they no longer need said medication. Flawed thinking, of course. Throw in the moralizing around medication and nobody wants to take their meds. I can't imagine people taking anti-psychotic medication are any different.
posted by [insert clever name here] at 8:24 AM on August 24, 2017 [1 favorite]
I give a sharp side-eye to the way mainstream medicine deals with internal experiences of all sorts.
Psychiatry likes to pretend that religion doesn't exist, or that it's nothing more than, if good, a collection of coping strategies; if bad, a neurotic abdication of logic and responsibility. It really doesn't deal well with any religion that involves communication with spirits, whether those are deities, ghosts, nature elementals, or something else.
I'm sure plenty of MeFites also believe those don't exist and anyone who claims to be communicating with them is at best delusional. I'm not out to persuade anyone, just pointing out that, in a culture that didn't promote the idea that religion is all a mental exercise, such experiences would be addressed very differently.
In NeoPagan and related religions, when an issue of "I hear voices" comes up, the question isn't "are they really voices or just from inside your head?" We're aware that's nigh-impossible to establish. Instead we ask: are they dangerous? Can you trust the facts they tell you? Are they demanding you do something? Are you happier when you hear them? Do you want them to go away? Who can you trust to help you sort out their meanings and intents?
Sometimes the end result is, these are hostile voices; make them go away; if meds will do that, get me meds. Sometimes the result is, I don't know if they're hostile but they're talking to me and I don't want them gone - help me figure out how to tell okay messages from dangerous ones.
posted by ErisLordFreedom at 9:42 AM on August 24, 2017 [4 favorites]
Psychiatry likes to pretend that religion doesn't exist, or that it's nothing more than, if good, a collection of coping strategies; if bad, a neurotic abdication of logic and responsibility. It really doesn't deal well with any religion that involves communication with spirits, whether those are deities, ghosts, nature elementals, or something else.
I'm sure plenty of MeFites also believe those don't exist and anyone who claims to be communicating with them is at best delusional. I'm not out to persuade anyone, just pointing out that, in a culture that didn't promote the idea that religion is all a mental exercise, such experiences would be addressed very differently.
In NeoPagan and related religions, when an issue of "I hear voices" comes up, the question isn't "are they really voices or just from inside your head?" We're aware that's nigh-impossible to establish. Instead we ask: are they dangerous? Can you trust the facts they tell you? Are they demanding you do something? Are you happier when you hear them? Do you want them to go away? Who can you trust to help you sort out their meanings and intents?
Sometimes the end result is, these are hostile voices; make them go away; if meds will do that, get me meds. Sometimes the result is, I don't know if they're hostile but they're talking to me and I don't want them gone - help me figure out how to tell okay messages from dangerous ones.
posted by ErisLordFreedom at 9:42 AM on August 24, 2017 [4 favorites]
Another interesting finding is that the majority of people who quit taking anti-psychotics and never look back actually do better than people who continually take medications over a 20 year period. There have been a number of 20 year longitudinal studies that really challenge the idea that the meds are even helping at all. Like for example this study
"The work performance of the patients who were continuously prescribed antipsychotics was at a low rate and did not improve over time. Multiple other factors also interfere with work functioning. The data suggest that some patients with schizophrenia not prescribed antipsychotics for prolonged periods can function relatively well. Multiple other factors are associated with poor post-hospital work performance. The longitudinal data raise questions about prolonged treatment of schizophrenia with antipsychotic medications."
or this one
"The 20-year data indicate that, longitudinally, after the first few years, antipsychotic medications do not eliminate or reduce the frequency of psychosis in schizophrenia, or reduce the severity of post-acute psychosis, although it is difficult to reach unambiguous conclusions about the efficacy of treatment in purely naturalistic or observational research. Longitudinally, on the basis of their psychotic activity and the disruption of functioning, the condition of the majority of SZ prescribed antipsychotics for multiple years would raise questions as to how many of them are truly in remission."
and this one
"At each follow-up, 30-40% of SZ patients were no longer on antipsychotics. Starting at the 4.5-year follow-ups and continuing thereafter, SZ patients not on antipsychotics for prolonged periods were significantly less likely to be psychotic and experienced more periods of recovery; they also had more favorable risk and protective factors. SZ patients off antipsychotics for prolonged periods did not relapse more frequently."
Or this one indicating those who refuse medication do NOT actually just have more social support and the meds themselves might be causing harm
"Symptom severity and distress did not differ between the groups. However, the non-medicated participants had significantly higher levels of general functioning than medicated participants and a longer duration of being non-medicated was significantly associated with a higher level of general functioning. In contrast to the hypotheses, not taking medication was not associated with more effective coping strategies or with higher levels of social support. Medicated participants more frequently reported the use of professional help as a coping strategy.
Our results corroborate previous studies finding improved functioning in individuals with schizophrenia spectrum disorders who do not take medication compared with those who take medication, but do not support the notion that this difference is explicable by better coping or higher levels of social support. Alternative explanations and avenues for research are discussed."
Given the fact that there is a potential to be doing more harm than good for a large portion of people, I was surprised to not see a lot more 20 year longitudinal studies in the last year to tease these variables out. I hope more are done and people become willing to face that patients might actually have a point when they say they feel better off meds instead of culturally shaming and refusing to listen to their perspective. It's possible to put someone in a safe environment temporarily until they can get stable and to use methods other than meds to do that. And yes I'm even talking about severe and dangerous mental illness. If getting someone stable happens faster with meds but makes it worse long term--- is that a gain?
posted by xarnop at 10:13 AM on August 24, 2017 [3 favorites]
"The work performance of the patients who were continuously prescribed antipsychotics was at a low rate and did not improve over time. Multiple other factors also interfere with work functioning. The data suggest that some patients with schizophrenia not prescribed antipsychotics for prolonged periods can function relatively well. Multiple other factors are associated with poor post-hospital work performance. The longitudinal data raise questions about prolonged treatment of schizophrenia with antipsychotic medications."
or this one
"The 20-year data indicate that, longitudinally, after the first few years, antipsychotic medications do not eliminate or reduce the frequency of psychosis in schizophrenia, or reduce the severity of post-acute psychosis, although it is difficult to reach unambiguous conclusions about the efficacy of treatment in purely naturalistic or observational research. Longitudinally, on the basis of their psychotic activity and the disruption of functioning, the condition of the majority of SZ prescribed antipsychotics for multiple years would raise questions as to how many of them are truly in remission."
and this one
"At each follow-up, 30-40% of SZ patients were no longer on antipsychotics. Starting at the 4.5-year follow-ups and continuing thereafter, SZ patients not on antipsychotics for prolonged periods were significantly less likely to be psychotic and experienced more periods of recovery; they also had more favorable risk and protective factors. SZ patients off antipsychotics for prolonged periods did not relapse more frequently."
Or this one indicating those who refuse medication do NOT actually just have more social support and the meds themselves might be causing harm
"Symptom severity and distress did not differ between the groups. However, the non-medicated participants had significantly higher levels of general functioning than medicated participants and a longer duration of being non-medicated was significantly associated with a higher level of general functioning. In contrast to the hypotheses, not taking medication was not associated with more effective coping strategies or with higher levels of social support. Medicated participants more frequently reported the use of professional help as a coping strategy.
Our results corroborate previous studies finding improved functioning in individuals with schizophrenia spectrum disorders who do not take medication compared with those who take medication, but do not support the notion that this difference is explicable by better coping or higher levels of social support. Alternative explanations and avenues for research are discussed."
Given the fact that there is a potential to be doing more harm than good for a large portion of people, I was surprised to not see a lot more 20 year longitudinal studies in the last year to tease these variables out. I hope more are done and people become willing to face that patients might actually have a point when they say they feel better off meds instead of culturally shaming and refusing to listen to their perspective. It's possible to put someone in a safe environment temporarily until they can get stable and to use methods other than meds to do that. And yes I'm even talking about severe and dangerous mental illness. If getting someone stable happens faster with meds but makes it worse long term--- is that a gain?
posted by xarnop at 10:13 AM on August 24, 2017 [3 favorites]
There are rights, and there is safety and there is compassion. Sometimes, people who have severe diseases hurt themselves - fairly often, in fact, and sometimes, less often, they hurt other people. In my experience, which isn't wide but is non-zero, people with severe brain disease, typically schizophrenia, that causes them to hear voices experience profound misery and suffering. If it's possible to learn to manage a severe psychiatric disease, that's incredibly good news. In the US, it's a mess. To stay on health insurance you either need to be competent to manage your financial affairs or have a manager. Support for food, housing, and treatment is being slashed and looks to be slashed further. The US 'healthcare' system is profit-driven, notably the pharmaceutical industry. No, they're not all evil ogres, but the free market is not effective at addressing mental health. A super-healthy person has to put in effort to stay healthy. Someone with a serious brain disease has a much steeper hill to climb.
When the person in my family with schizophrenia was involuntarily committed and ended up in a well-managed group home, his life got better, he didn't abuse his family or behave aggressively any more, and he was happy to be calmer and have a rigidly structured and organized life imposed on him. It ended up being the most compassionate option.
The right to decline treatment is one thing. If you are well enough to decline treatment, you live on the streets rather than an institution, and you then break the law because you actually aren't able to manage your disease, are you able to accept consequences? There was a case in NYC, I can't find it, where a woman sued and won the right to not be in an institution, but then was homeless, and was arrested for public defecation, I think. In theory, and IANAL, if you have the ability to choose not to be hospitalized or medicated, then you go to jail for law-breaking actions. That's not compassionate.
Like many health problems, money would help. The US could be funding better research, treatment and social supports. We could and should look at how people can live with a really terrible disease with as little harm to themselves and other as possible, and as much self-direction. If you are looking for anything remotely resembling compassion in the US these days, the government is the last place to look.
posted by theora55 at 10:19 AM on August 24, 2017 [4 favorites]
When the person in my family with schizophrenia was involuntarily committed and ended up in a well-managed group home, his life got better, he didn't abuse his family or behave aggressively any more, and he was happy to be calmer and have a rigidly structured and organized life imposed on him. It ended up being the most compassionate option.
The right to decline treatment is one thing. If you are well enough to decline treatment, you live on the streets rather than an institution, and you then break the law because you actually aren't able to manage your disease, are you able to accept consequences? There was a case in NYC, I can't find it, where a woman sued and won the right to not be in an institution, but then was homeless, and was arrested for public defecation, I think. In theory, and IANAL, if you have the ability to choose not to be hospitalized or medicated, then you go to jail for law-breaking actions. That's not compassionate.
Like many health problems, money would help. The US could be funding better research, treatment and social supports. We could and should look at how people can live with a really terrible disease with as little harm to themselves and other as possible, and as much self-direction. If you are looking for anything remotely resembling compassion in the US these days, the government is the last place to look.
posted by theora55 at 10:19 AM on August 24, 2017 [4 favorites]
I work in disability law, which means I've encountered a fairly large number of people who have various kinds of psychosis (and many, many other kinds of mental illness). By the nature of the kind of work I do, the people I see are people who have psychotic symptoms that significantly interfere with their lives. Many are or have been homeless, have lost relationships, are unable to hold jobs. But as with any other kind of mental illness, I know I am not seeing the average person who has these symptoms - I'm seeing people who have severe symptoms. I know that a lot of people hear voices and are able to keep that from interfering with their lives for a long time, to stay in the workforce, to maintain relationships, to stay housed.
What I know about the condition from talking to people is that it can be very scary and distracting, and for most people it is extremely embarrassing. Like, people would rather talk about losing bowel control. People who have these symptoms are also, and I think understandably, terrified that just having the symptoms will be enough to institutionalize them involuntarily. They are afraid of the condition, but often even more of the stigma of the condition and how it will impact them.
The medication for these conditions is harsh, and it has nasty side effects for a lot of people. Many are not able to tolerate it for various reasons. Given how heavy the meds for this are, I think this is a really good reason to want to check out alternatives or see what can be done short of these medications - while they are lifechanging in good ways for some, for others they are awful. The long-term consequences are significant too.
Also,
In my experience, only people who have been on Haldol since the seventies and eighties and like it are still on it.
I've encountered people who have been prescribed it more recently than that, including a few who find it very valuable. I've encountered more people who have tried it and hated it. Many of them have experiences much more recent than the 80s.
Some of the worst things I've seen happening to people with psychotic symptoms are, of course, their greater vulnerability to various abuses and crimes, and also how they are treated within the disability system. There's an expectation that people should be on antipsychotics, and people in positions of authority often have limited sympathy for people who find the medications intolerable but don't get this documented in a particular way: getting marked as "noncompliant", even if it's that the medication is awful and your provider won't listen to you about it, is hard to deal with.
I don't have psychotic symptoms, thankfully, but I do have depression, anxiety, and rheumatoid arthritis, all of which have been hard to medicate because lots of meds do not agree with me. I can only imagine how awful it would be to have the baseline expected side effects to be even more severe, and to have even more pressure about it in addition to a stigma that I might be a danger to others. It's so easy to say what other people should be doing, when we're not the ones paying the personal price and when we don't necessarily understand what it is going to involve.
All of this is to say that even if we don't understand why someone else makes a decision, we should respect their right to make it and preserve their autonomy as much as we can.
posted by bile and syntax at 1:41 PM on August 24, 2017 [15 favorites]
What I know about the condition from talking to people is that it can be very scary and distracting, and for most people it is extremely embarrassing. Like, people would rather talk about losing bowel control. People who have these symptoms are also, and I think understandably, terrified that just having the symptoms will be enough to institutionalize them involuntarily. They are afraid of the condition, but often even more of the stigma of the condition and how it will impact them.
The medication for these conditions is harsh, and it has nasty side effects for a lot of people. Many are not able to tolerate it for various reasons. Given how heavy the meds for this are, I think this is a really good reason to want to check out alternatives or see what can be done short of these medications - while they are lifechanging in good ways for some, for others they are awful. The long-term consequences are significant too.
Also,
In my experience, only people who have been on Haldol since the seventies and eighties and like it are still on it.
I've encountered people who have been prescribed it more recently than that, including a few who find it very valuable. I've encountered more people who have tried it and hated it. Many of them have experiences much more recent than the 80s.
Some of the worst things I've seen happening to people with psychotic symptoms are, of course, their greater vulnerability to various abuses and crimes, and also how they are treated within the disability system. There's an expectation that people should be on antipsychotics, and people in positions of authority often have limited sympathy for people who find the medications intolerable but don't get this documented in a particular way: getting marked as "noncompliant", even if it's that the medication is awful and your provider won't listen to you about it, is hard to deal with.
I don't have psychotic symptoms, thankfully, but I do have depression, anxiety, and rheumatoid arthritis, all of which have been hard to medicate because lots of meds do not agree with me. I can only imagine how awful it would be to have the baseline expected side effects to be even more severe, and to have even more pressure about it in addition to a stigma that I might be a danger to others. It's so easy to say what other people should be doing, when we're not the ones paying the personal price and when we don't necessarily understand what it is going to involve.
All of this is to say that even if we don't understand why someone else makes a decision, we should respect their right to make it and preserve their autonomy as much as we can.
posted by bile and syntax at 1:41 PM on August 24, 2017 [15 favorites]
beautifully stated bile and syntax!
posted by xarnop at 1:45 PM on August 24, 2017 [2 favorites]
posted by xarnop at 1:45 PM on August 24, 2017 [2 favorites]
I posted about this on Facebook, and a trans friend of mine immediately responded that it reminded her of the recent developments in how trans people are treated psychiatrically - from 'we have to get your brain in alignment with your current life' to 'we have to get your life in alignment with your brain.'
posted by showbiz_liz at 4:59 PM on August 24, 2017 [4 favorites]
posted by showbiz_liz at 4:59 PM on August 24, 2017 [4 favorites]
the meds themselves might be causing harm
Define "harm".
For the studies you list (and some of them are are the same cohort, just remixed slightly), the sample size of people with schizophrenia diagnoses are n=~90+/-40. This is problematic, since it's powered too low to make such sweeping generalizations and lends itself to p hacking. That the cohorts are themselves followed is concerning for selection and survivor bias, since there's little attrition analysis for mortality and drop-outs, which may reduce sampling of those with more severe symptomatology. The FIN11 study I linked to above has an n of 66,881 and controls of 5.2 million. For behavioral outcomes, any study with sample size less than a few hundred is speculative at best when it comes to such determinations. One of the drawbacks of the US's fractured healthcare system is that it is much more difficult to do these kind of massive, nationwide outcome studies. In this regard, US-originated psychiatric epidemiology can feel like it's decades behind what's possible in some other parts of the world.
posted by meehawl at 4:41 PM on August 25, 2017 [3 favorites]
Define "harm".
For the studies you list (and some of them are are the same cohort, just remixed slightly), the sample size of people with schizophrenia diagnoses are n=~90+/-40. This is problematic, since it's powered too low to make such sweeping generalizations and lends itself to p hacking. That the cohorts are themselves followed is concerning for selection and survivor bias, since there's little attrition analysis for mortality and drop-outs, which may reduce sampling of those with more severe symptomatology. The FIN11 study I linked to above has an n of 66,881 and controls of 5.2 million. For behavioral outcomes, any study with sample size less than a few hundred is speculative at best when it comes to such determinations. One of the drawbacks of the US's fractured healthcare system is that it is much more difficult to do these kind of massive, nationwide outcome studies. In this regard, US-originated psychiatric epidemiology can feel like it's decades behind what's possible in some other parts of the world.
posted by meehawl at 4:41 PM on August 25, 2017 [3 favorites]
"Define "harm"."
Ok. "Antipsychotics, and to a more restricted degree antidepressants and mood stabilizers, are associated with an increased risk for several physical diseases, including obesity, dyslipidemia, diabetes mellitus, thyroid disorders, hyponatremia; cardiovascular, respiratory tract, gastrointestinal, haematological, musculoskeletal and renal diseases, as well as movement and seizure disorders. Higher dosages, polypharmacy, and treatment of vulnerable (e.g., old or young) individuals are associated with greater absolute (elderly) and relative (youth) risk for most of these physical diseases."
What happens to people who have bad reactions to the drugs is that instead of being permitted to stop they are often given MORE drugs increasing the risk of a poor outcome and serious long term damage. I would say that constitutes harm. Also forcing people to continue living a few years longer even when you are making them feel worse is not necessary a service to them in the opinion of many. Also 11 years (even 20 years) is not really long enough to show that the life protective effects hold into older ages. If there is an initial reduction in say suicide partnered with an increase in physical illness and death in middle and later ages after 30 years of use, is the overall lifespan of people using anti-psychotics actually improved? And if coming of anti-psychotics suddenly causes adverse reactions which are being confused with a naturally occurring episode of psychosis, how do we tease that out of the data before assuming it's proof that being medicated is better overall than not?
I chose to throw what they gave me in the trash after first episode. Thankfully. I only had an episode while ON medication. I have never had seizures or psychotic episodes while unmedicated. Instead of continuing the path of polypharmacy and increasingly risky treatment measures I was pressured toward; I opted for lifestyle changes, trauma care, bodywork, and neurofeedback and have never dealt with the horrible experiences I had while medicated since, thank the goddess. I noticed many of my fellows in treatment who were the most treatment adherent started having far more and long term psychosis and have watched friends go from momentary lapses to their functioning deteriorating while obeying their course of treatment with antipsychotics.
While I think forcing people to take drugs with the kind of side effects we are talking about simply based on a diagnosis is ultimately wrong regardless, I think we aren't putting enough effort into how this really impacts people long term.
I hope to continue to read research and further my education in this area to protect the vulnerable from being harmed by the very people claiming to help them.
Why does pulling up what I can find on clozapine lead to a huge number of studies saying things like this? I would call this harm and it doesn't appear increases in antipsychotic use are actually extending the overall lifespan of people with schizophrenia like they are claimed to from what I can tell. While I haven't finished my degree, I have been taking coursework in psychology for a long while and done internships in mental health facilities, followed organizations like Icarus Project and Mad in America from their beginnings, worked in social services as a case manager and received professional trainings in mental health, as well as my own experiences being harmed by the system.
Speaking up is courageous, terrifying, and damaging to those of us who do and I am so proud of those who have managed to keep it up because I dropped off to focus on expanding my education so I can better battle those who I believe are contributing these harms with a deeper understanding of the research methods and language since that is how those with social status and power within the current system shut down our lived experiences.
"Patients with schizophrenia die on average 25 years earlier than the general population, and this gap appears to be increasing.
Most of the excess mortality is due to premature cardiovascular deaths rather than suicide.
Many psychotropic agents are orexigenic and can increase weight and promote dyslipidaemia.
Traditional cardiac risk factors are undertreated among patients with schizophrenia, and they are less likely to receive cardiac revascularisation than those without a mental illness.
Clozapine is an atypical antipsychotic medication effective for treatment of refractory schizophrenia, but is associated with the risk of myocarditis and cardiomyopathy."
posted by xarnop at 7:56 AM on August 26, 2017 [1 favorite]
Ok. "Antipsychotics, and to a more restricted degree antidepressants and mood stabilizers, are associated with an increased risk for several physical diseases, including obesity, dyslipidemia, diabetes mellitus, thyroid disorders, hyponatremia; cardiovascular, respiratory tract, gastrointestinal, haematological, musculoskeletal and renal diseases, as well as movement and seizure disorders. Higher dosages, polypharmacy, and treatment of vulnerable (e.g., old or young) individuals are associated with greater absolute (elderly) and relative (youth) risk for most of these physical diseases."
What happens to people who have bad reactions to the drugs is that instead of being permitted to stop they are often given MORE drugs increasing the risk of a poor outcome and serious long term damage. I would say that constitutes harm. Also forcing people to continue living a few years longer even when you are making them feel worse is not necessary a service to them in the opinion of many. Also 11 years (even 20 years) is not really long enough to show that the life protective effects hold into older ages. If there is an initial reduction in say suicide partnered with an increase in physical illness and death in middle and later ages after 30 years of use, is the overall lifespan of people using anti-psychotics actually improved? And if coming of anti-psychotics suddenly causes adverse reactions which are being confused with a naturally occurring episode of psychosis, how do we tease that out of the data before assuming it's proof that being medicated is better overall than not?
I chose to throw what they gave me in the trash after first episode. Thankfully. I only had an episode while ON medication. I have never had seizures or psychotic episodes while unmedicated. Instead of continuing the path of polypharmacy and increasingly risky treatment measures I was pressured toward; I opted for lifestyle changes, trauma care, bodywork, and neurofeedback and have never dealt with the horrible experiences I had while medicated since, thank the goddess. I noticed many of my fellows in treatment who were the most treatment adherent started having far more and long term psychosis and have watched friends go from momentary lapses to their functioning deteriorating while obeying their course of treatment with antipsychotics.
While I think forcing people to take drugs with the kind of side effects we are talking about simply based on a diagnosis is ultimately wrong regardless, I think we aren't putting enough effort into how this really impacts people long term.
I hope to continue to read research and further my education in this area to protect the vulnerable from being harmed by the very people claiming to help them.
Why does pulling up what I can find on clozapine lead to a huge number of studies saying things like this? I would call this harm and it doesn't appear increases in antipsychotic use are actually extending the overall lifespan of people with schizophrenia like they are claimed to from what I can tell. While I haven't finished my degree, I have been taking coursework in psychology for a long while and done internships in mental health facilities, followed organizations like Icarus Project and Mad in America from their beginnings, worked in social services as a case manager and received professional trainings in mental health, as well as my own experiences being harmed by the system.
Speaking up is courageous, terrifying, and damaging to those of us who do and I am so proud of those who have managed to keep it up because I dropped off to focus on expanding my education so I can better battle those who I believe are contributing these harms with a deeper understanding of the research methods and language since that is how those with social status and power within the current system shut down our lived experiences.
"Patients with schizophrenia die on average 25 years earlier than the general population, and this gap appears to be increasing.
Most of the excess mortality is due to premature cardiovascular deaths rather than suicide.
Many psychotropic agents are orexigenic and can increase weight and promote dyslipidaemia.
Traditional cardiac risk factors are undertreated among patients with schizophrenia, and they are less likely to receive cardiac revascularisation than those without a mental illness.
Clozapine is an atypical antipsychotic medication effective for treatment of refractory schizophrenia, but is associated with the risk of myocarditis and cardiomyopathy."
posted by xarnop at 7:56 AM on August 26, 2017 [1 favorite]
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posted by Pendragon at 3:53 PM on August 23, 2017 [5 favorites]