The Daniel Hauser story, recently in the news, highlights some of the dilemma which burdens the treatment of serious mental illness. Dan is the 13 year-old Sleepy Eye boy whose parents “support his decision to” refuse chemo-therapy for Hodgkin’s Lymphoma, triggering a legal showdown with child-protection authorities.
Dan’s case stirs up familiar controversies: the efficacy of modern/western medical science versus alternative medicine; the right of an individual to refuse treatment; and the legal/moral criteria for over-riding such rights. I see both similarities and contrasts between Dan’s situation and the plight of adults with schizophrenia.
Untreated Hodgkin’s Lymphoma is likely fatal – schizophrenia rarely gets listed as the official cause-of-death, but untreated schizophrenia can totally destroy a person’s life. However, Hodgkin’s Lymphoma generally responds to chemotherapy, usually allowing the patient to live a long and happy life – schizophrenia generally responds to treatment (medication) which can be referred to as chemotherapy, which (in combination with the ideal support) allows the patient to live a long, happy and productive life. And chemotherapy for Hodgkin’s Lymphoma isn’t 100% successful, and has really nasty side-effects. The medications used to treat schizophrenia are also effective but has some horrible side-effects. The only difference is that treatment for schizophrenia is for a life-time.
Typically, in our legal tradition, a patient has the right to refuse treatment. But Dan, too young to vote, drink, or get married, doesn’t possess the legal right to consent to or refuse medical treatment, because we recognize that most 13 year-olds don’t possess sound judgment – and neither do people in the throes of untreated schizophrenia. Generally, the parents of a minor are granted the authority to make legal decisions on the minor’s behalf, and mostly, this seems to work, i.e., the parents consent and the patient receives treatment – no such presumption exists in the case of adults with schizophrenia, who generally retain their rights, despite the impaired judgment, and frequently refuse treatment.. But Dan’s parents “support his decision to” refuse treatment, raising the ire of civil authorities – just as adults with schizophrenia sometimes, but statistically infrequently, are involuntarily committed for treatment.
I find it ironic that public opinion strongly (though not unanimously) supports intervention by authorities to force treatment on young Dan, whereas, if he were 18 and severely impaired by schizophrenia, we would typically value his right to refuse above his right to receive treatment, thus making him an unnecessary burden to society for the next 50 years.
Showing posts with label schizophrenia. Show all posts
Showing posts with label schizophrenia. Show all posts
Wednesday, May 27, 2009
Monday, March 30, 2009
Medications...Good? Bad?
Many people with serious mental illness believe that they are over-medicated. Their family members and even most people in our society at large share this perception. But it’s not true; actually, most Americans with serious mental illness are under-medicated.
Today's medications have the potential to bring great relief to almost everyone with serious mental illness. Many of these medications have unpleasant side-effects. HOWEVER, there is not a single drug or a single dose that works for everyone; often it takes months of trial and error to determine the med-regime which produces the best possible result, and some drugs make the problem worse.
They don’t “cure” mental illness like penicillin cures strep throat; they merely relieve the symptoms like aspirin relieves the pain of arthritis, and that means you have to keep taking them to achieve optimal results. Many of these medications are expensive – so drug companies, doctors and pharmacies get rich. But in spite of all these negatives, the big problem, by far, is that people aren’t taking enough of them.
One might assume that anyone in a hospital, a jail, or a licensed mental health facility is required to take whatever meds a doctor prescribes, but it isn’t true. A person perceived to be "out of control" can be given medications involuntarily, but only for a day or two. A court can order involuntary meds on a permanent basis (called a “Jarvis order” in Minnesota), but this is a complicated and expensive process. Only a tiny fraction of the people with serious mental illness are ever subject to a Jarvis. Everyone else takes meds voluntarily, which mostly means they don’t take them.
Besides the many real negatives listed above, taking pills is inconvenient. And since schizophrenia is primarily a thought disorder, which distorts one’s sense of reality, people with this illness often don’t realize that they need them.
Complicating this issue is a significant time-lag; most of the medications used in treating schizophrenia have are moderately long-acting. This is often described in terms of a half-life, which means that if you take a pill today, half of the drug is still in your body two weeks from now. So if you take 20 milligrams of some drug every day, the agent levels out at somewhere over 100 milligrams in your bloodstream. And if you stop taking it, you enjoy the effects, decreasingly, for several weeks, and don’t notice much difference.
By the time the level of the agent drops enough that you aren’t getting any benefit, you forgot you were ever taking it.
Today's medications have the potential to bring great relief to almost everyone with serious mental illness. Many of these medications have unpleasant side-effects. HOWEVER, there is not a single drug or a single dose that works for everyone; often it takes months of trial and error to determine the med-regime which produces the best possible result, and some drugs make the problem worse.
They don’t “cure” mental illness like penicillin cures strep throat; they merely relieve the symptoms like aspirin relieves the pain of arthritis, and that means you have to keep taking them to achieve optimal results. Many of these medications are expensive – so drug companies, doctors and pharmacies get rich. But in spite of all these negatives, the big problem, by far, is that people aren’t taking enough of them.
One might assume that anyone in a hospital, a jail, or a licensed mental health facility is required to take whatever meds a doctor prescribes, but it isn’t true. A person perceived to be "out of control" can be given medications involuntarily, but only for a day or two. A court can order involuntary meds on a permanent basis (called a “Jarvis order” in Minnesota), but this is a complicated and expensive process. Only a tiny fraction of the people with serious mental illness are ever subject to a Jarvis. Everyone else takes meds voluntarily, which mostly means they don’t take them.
Besides the many real negatives listed above, taking pills is inconvenient. And since schizophrenia is primarily a thought disorder, which distorts one’s sense of reality, people with this illness often don’t realize that they need them.
Complicating this issue is a significant time-lag; most of the medications used in treating schizophrenia have are moderately long-acting. This is often described in terms of a half-life, which means that if you take a pill today, half of the drug is still in your body two weeks from now. So if you take 20 milligrams of some drug every day, the agent levels out at somewhere over 100 milligrams in your bloodstream. And if you stop taking it, you enjoy the effects, decreasingly, for several weeks, and don’t notice much difference.
By the time the level of the agent drops enough that you aren’t getting any benefit, you forgot you were ever taking it.
Monday, March 16, 2009
Am I Paranoid?
In the last 30 years working with people with various levels of schizophrenia, one thing that I've come to understand is paranoia. Not everyone diagnosed with schizophrenia experiences paranoia, and even those that do aren’t paranoid all the time.
Paranoia is commonly understood to mean a feeling of persecution. But the real definition is broader, more fundamental; it really means an unwarranted perception of one’s importance. What? If a person feels that Al Qaeda is following them around, the main flaw in their thinking is not so much a distorted perception of Al Qaeda as it is the perception that they are so important that Al Qaeda would be interested.
Sometimes I hear a song or an opinion on the radio and I think “that song describes an event/emotion from my life,” or “that guy just said what I’ve been thinking for years,” but I don’t dwell on such thoughts. People with schizophrenia sometimes think, “Hey, that guy must be following me around, observing my life, stealing my thoughts.”
Most of the time, people with schizophrenia realize that such thoughts are mere distractions, but they can’t quite shake them. I have often discussed people’s delusions with them and persuaded them to admit that they made no sense, but even then the delusions persist.
Once I had a long conversation with someone who wouldn’t take a shower because of a movie poster he had seen where snakes came out of the drain. He accepted the fact that big snakes like that wouldn’t fit through the tiny holes in the drain, and he even understood that we don’t have poisonous snakes living in the Mpls sewer system, but he still wouldn’t take a shower because he perceived the poster as a warning meant specifically for him. That’s paranoia.
Paranoia is commonly understood to mean a feeling of persecution. But the real definition is broader, more fundamental; it really means an unwarranted perception of one’s importance. What? If a person feels that Al Qaeda is following them around, the main flaw in their thinking is not so much a distorted perception of Al Qaeda as it is the perception that they are so important that Al Qaeda would be interested.
Sometimes I hear a song or an opinion on the radio and I think “that song describes an event/emotion from my life,” or “that guy just said what I’ve been thinking for years,” but I don’t dwell on such thoughts. People with schizophrenia sometimes think, “Hey, that guy must be following me around, observing my life, stealing my thoughts.”
Most of the time, people with schizophrenia realize that such thoughts are mere distractions, but they can’t quite shake them. I have often discussed people’s delusions with them and persuaded them to admit that they made no sense, but even then the delusions persist.
Once I had a long conversation with someone who wouldn’t take a shower because of a movie poster he had seen where snakes came out of the drain. He accepted the fact that big snakes like that wouldn’t fit through the tiny holes in the drain, and he even understood that we don’t have poisonous snakes living in the Mpls sewer system, but he still wouldn’t take a shower because he perceived the poster as a warning meant specifically for him. That’s paranoia.
Tuesday, March 10, 2009
Mythbusting - Part 5
Myth: Most mental illnesses are actually schizophrenia.
I just want to say that schizophrenia is more a category of poorly-understood conditions than it is a single disease. My hope is that within the next few years, researchers can isolate several distinct brain diseases, with distinct causes and distinct cures/treatments, all of which are currently being diagnosed as schizophrenia.
For now, let's say that schizophrenia involves a naturally-occuring checmical imbalance of the brain fluid. The embalance causes hyper-activity of the impulses we call "thoughts." This is counter-intuitive, because when you observe people with untreated schizophrenia, they frequently seem flat, lethargic, even vacant of thought. What apprently is going on here is that they have too many thoughts - so many that they can't sort out what is real and what is not.
There's lots of stuff going on in my brain as I type this: A conversation in the next room, overly-oud stereos on Nicollet Avenue, other work I need to do, the ballgame on TV tonight, food, sex, etc. But, not having this checmical imbalance called schizophrenia, I have the ability to focus enought brain power to finish this article. People with untreated chemical imbalance often find themselves unable to focus sufficiently to complete even the simplest of tasks; that's schizophrenia.
I just want to say that schizophrenia is more a category of poorly-understood conditions than it is a single disease. My hope is that within the next few years, researchers can isolate several distinct brain diseases, with distinct causes and distinct cures/treatments, all of which are currently being diagnosed as schizophrenia.
For now, let's say that schizophrenia involves a naturally-occuring checmical imbalance of the brain fluid. The embalance causes hyper-activity of the impulses we call "thoughts." This is counter-intuitive, because when you observe people with untreated schizophrenia, they frequently seem flat, lethargic, even vacant of thought. What apprently is going on here is that they have too many thoughts - so many that they can't sort out what is real and what is not.
There's lots of stuff going on in my brain as I type this: A conversation in the next room, overly-oud stereos on Nicollet Avenue, other work I need to do, the ballgame on TV tonight, food, sex, etc. But, not having this checmical imbalance called schizophrenia, I have the ability to focus enought brain power to finish this article. People with untreated chemical imbalance often find themselves unable to focus sufficiently to complete even the simplest of tasks; that's schizophrenia.
Monday, February 23, 2009
Mythbusting 4
Myth: Schizophrenia is a hopeless condition.
In my opinion, Schizophrenia isn’t really a disease so much as it is a diagnostic category. And even then, not a well-defined one, or one for which there is a clear diagnostic test. In the preface to Lodge Magic (2000), I defined it as “out of money, acts goofy, we don’t know why.”
The out-of-money part has to do with the fact that the medical establishment considers schizophrenia to be a horrible, hopeless diagnosis, one you would never offer to a well-heeled patient likely to seek a second opinion. (As a matter of fact, they wouldn’t tell my wife she had Lymphoma either; we didn’t catch on until we walked into the area where the “specialist’s” office was located and the sign said “Oncology.”)
And schizophrenia is definitely an unpleasant condition, not something one would choose to have, or wish on a loved-one. The assumption, even among many mental health professionals, is that people with schizophrenia can’t hold a job – and are therefore eternally-dependent on some sort of welfare, won’t have any friends, will be a constant embarrassment to their families, and – here’s the best part, will die 25 years early.
But these assumptions describe undiagnosed, or poorly treated schizophrenia. If a person with schizophrenia gets good quality treatment and support services, he/she can live a life not that much different from the average American.
At Tasks Unlimited, for example, 100% of our clients with schizophrenia are employed, 35% work full time (and by doing so don't need or recieve any income subsidy), have lots of friends, and are no more of an embarrassment to their families than I am. We don’t have good data on the dying that substantiates them dying a little ahead of schedule, but nothing like 25 years early. In fact, the lives of Tasks clients with schizophrenia are very similar to the lives of the average American, including watching too much TV and eating too much junk food.
Every once in a while, I manage to get some media outlet interested in a story about a Tasks client. Often they send a reporter who has done previous stories about how badly the mental health system works, and this reporter gets excited to see how well our clients are doing. But they always run in to trouble when their editor sees the story. The disappointed editor says, “This is a story about guys getting up in the morning, doing a few chores, going to work, coming home, having a pizza, watching the game, and going to bed. BORING!”
It is true that most people with schizophrenia lead miserable lives, but it doesn’t have to be that way. With the proper services, they can be as boring as the rest of us.
In my opinion, Schizophrenia isn’t really a disease so much as it is a diagnostic category. And even then, not a well-defined one, or one for which there is a clear diagnostic test. In the preface to Lodge Magic (2000), I defined it as “out of money, acts goofy, we don’t know why.”
The out-of-money part has to do with the fact that the medical establishment considers schizophrenia to be a horrible, hopeless diagnosis, one you would never offer to a well-heeled patient likely to seek a second opinion. (As a matter of fact, they wouldn’t tell my wife she had Lymphoma either; we didn’t catch on until we walked into the area where the “specialist’s” office was located and the sign said “Oncology.”)
And schizophrenia is definitely an unpleasant condition, not something one would choose to have, or wish on a loved-one. The assumption, even among many mental health professionals, is that people with schizophrenia can’t hold a job – and are therefore eternally-dependent on some sort of welfare, won’t have any friends, will be a constant embarrassment to their families, and – here’s the best part, will die 25 years early.
But these assumptions describe undiagnosed, or poorly treated schizophrenia. If a person with schizophrenia gets good quality treatment and support services, he/she can live a life not that much different from the average American.
At Tasks Unlimited, for example, 100% of our clients with schizophrenia are employed, 35% work full time (and by doing so don't need or recieve any income subsidy), have lots of friends, and are no more of an embarrassment to their families than I am. We don’t have good data on the dying that substantiates them dying a little ahead of schedule, but nothing like 25 years early. In fact, the lives of Tasks clients with schizophrenia are very similar to the lives of the average American, including watching too much TV and eating too much junk food.
Every once in a while, I manage to get some media outlet interested in a story about a Tasks client. Often they send a reporter who has done previous stories about how badly the mental health system works, and this reporter gets excited to see how well our clients are doing. But they always run in to trouble when their editor sees the story. The disappointed editor says, “This is a story about guys getting up in the morning, doing a few chores, going to work, coming home, having a pizza, watching the game, and going to bed. BORING!”
It is true that most people with schizophrenia lead miserable lives, but it doesn’t have to be that way. With the proper services, they can be as boring as the rest of us.
Monday, February 9, 2009
Mythbusting 3
Myth: Schizophrenia involves dual or split personalities.
Fortunately, this myth is not wide-spread among mental health professionals, but it is still a common misunderstanding among the general public. Despite years of effort by the professional community to set the record straight, most people still believe this myth. Hardly a week goes by that I don’t hear some public figure (okay, maybe I listen to too much sports-talk radio) refer to a quarterback’s performance or a politician’s positions as “schizophrenic” – meaning inconsistent.
Apparently, people sometimes actually experience multiple personalities. The clinical term, or diagnosis, for this condition is “dis-associative disorder.” This was a very trendy diagnosis back in the 90s, but it is my impression that people with multiple, fully-developed personalities (of the sort frequently depicted by Hollywood) are extremely rare. I have worked in the field of schizophrenia for almost 35 years and I’ve never met one.
The popularity of multiple personalities began with Robert Louis Stevenson’s 19th century novel, Dr. Jekyl and Mr. Hyde and it has been a staple of popular culture at least since then. Why does the myth that multiple personalities are common phenomena persist? I guess for the same reason that we believe in flying saucers and that strangers abduct children – we love bizarre, scary stuff.
The truth is that multiple personality or dis-associative disorder is extremely rare and has nothing to do with schizophrenia. Neither share similar symptoms and are totally different diagnosis.
Why is our culture so resistant to the fact that “schizophrenia” is the wrong label? I haven’t got a clue.
Fortunately, this myth is not wide-spread among mental health professionals, but it is still a common misunderstanding among the general public. Despite years of effort by the professional community to set the record straight, most people still believe this myth. Hardly a week goes by that I don’t hear some public figure (okay, maybe I listen to too much sports-talk radio) refer to a quarterback’s performance or a politician’s positions as “schizophrenic” – meaning inconsistent.
Apparently, people sometimes actually experience multiple personalities. The clinical term, or diagnosis, for this condition is “dis-associative disorder.” This was a very trendy diagnosis back in the 90s, but it is my impression that people with multiple, fully-developed personalities (of the sort frequently depicted by Hollywood) are extremely rare. I have worked in the field of schizophrenia for almost 35 years and I’ve never met one.
The popularity of multiple personalities began with Robert Louis Stevenson’s 19th century novel, Dr. Jekyl and Mr. Hyde and it has been a staple of popular culture at least since then. Why does the myth that multiple personalities are common phenomena persist? I guess for the same reason that we believe in flying saucers and that strangers abduct children – we love bizarre, scary stuff.
The truth is that multiple personality or dis-associative disorder is extremely rare and has nothing to do with schizophrenia. Neither share similar symptoms and are totally different diagnosis.
Why is our culture so resistant to the fact that “schizophrenia” is the wrong label? I haven’t got a clue.
Monday, January 26, 2009
Mythbusting 2
Unless you work in the field, you are unlikely to understand the many complexities of mental illness. In recent years, for example, Tasks started programs for mothers with serious mental illness, and for ex-felons with serious mental illness, and asked professionals in those fields to refer clients; but this hasn’t worked especially well because these systems are not staffed by mental health experts.
Neurotic behavior, unnatural fear of heights, impulsivity, gambling addictions, even dyslexia are all forms of mental pathology in the sense that one’s brain is not processing data in a completely healthy, efficient manner. But only three conditions are typically classified as “serious” mental illnesses: schizophrenia, major depression/bi-polar disorder, and border-line personality disorder.
Generally, these three are considered the most serious in the sense that they cause the greatest disruption to an individual’s life and are the most difficult to treat. I know that people who work with Autism or Fetal-Alcohol Syndrome or Alzheimer’s will be inclined to argue, but you would be wasting your time arguing with me, because I’m not the one who defined “serious” mental illness. I’m just saying that schizophrenia, bi-polar disorder, and border-line are the three diagnosis that Tasks Unlimited is certified to treat.
But even these three are quite different from each other, and lumping them together creates major problems. Policy-makers, even those deemed “expert” in the field of serious mental illness, often attempt to apply rules and expectations to all three diagnostic categories as though they were the same or very similar. I frequently attend conferences where panels of college-graduate bi-polars lecture a crowd of professionals about what people with serious mental illness think/want/need. But in fact, people with bi-polar disorder have no special insight into what people with schizophrenia think/want/need – these are different illnesses, and generally different socio-economic classes as well.
The poorly named “border-line personality disorder” is like a lifelong, bad attitude, which does not respond well to medications. People with this condition love to start fights; the layman’s term for these people is “asshole.” But it is important to remember that they actually can’t help themselves, there is something wrong with their brain (science knows even less about this than they do about schizophrenia) that literally makes them act like that. Tasks doesn’t have much success we these folks, and neither does anyone else that I know of.
“Bi-polar disorder” is what used to be called “manic-depression.” This is fundamentally a mood disorder, which often responds very well to medications – so well that many people with this condition live reasonably normal lives. Tasks tends to serve those whose condition is not completely stabilized by meds.
“Schizophrenia” is Tasks Unlimited’s special area of expertise, and the subject of my next blog.
Neurotic behavior, unnatural fear of heights, impulsivity, gambling addictions, even dyslexia are all forms of mental pathology in the sense that one’s brain is not processing data in a completely healthy, efficient manner. But only three conditions are typically classified as “serious” mental illnesses: schizophrenia, major depression/bi-polar disorder, and border-line personality disorder.
Generally, these three are considered the most serious in the sense that they cause the greatest disruption to an individual’s life and are the most difficult to treat. I know that people who work with Autism or Fetal-Alcohol Syndrome or Alzheimer’s will be inclined to argue, but you would be wasting your time arguing with me, because I’m not the one who defined “serious” mental illness. I’m just saying that schizophrenia, bi-polar disorder, and border-line are the three diagnosis that Tasks Unlimited is certified to treat.
But even these three are quite different from each other, and lumping them together creates major problems. Policy-makers, even those deemed “expert” in the field of serious mental illness, often attempt to apply rules and expectations to all three diagnostic categories as though they were the same or very similar. I frequently attend conferences where panels of college-graduate bi-polars lecture a crowd of professionals about what people with serious mental illness think/want/need. But in fact, people with bi-polar disorder have no special insight into what people with schizophrenia think/want/need – these are different illnesses, and generally different socio-economic classes as well.
The poorly named “border-line personality disorder” is like a lifelong, bad attitude, which does not respond well to medications. People with this condition love to start fights; the layman’s term for these people is “asshole.” But it is important to remember that they actually can’t help themselves, there is something wrong with their brain (science knows even less about this than they do about schizophrenia) that literally makes them act like that. Tasks doesn’t have much success we these folks, and neither does anyone else that I know of.
“Bi-polar disorder” is what used to be called “manic-depression.” This is fundamentally a mood disorder, which often responds very well to medications – so well that many people with this condition live reasonably normal lives. Tasks tends to serve those whose condition is not completely stabilized by meds.
“Schizophrenia” is Tasks Unlimited’s special area of expertise, and the subject of my next blog.
Tuesday, January 13, 2009
Mythbusting part 1
I talk to a lot of people every day and the same questions come up all the time. With all the information available these days, I'm still shocked that mental illness is still so misunderstood. So, when someone came up to me the other and told me that he thought that mental illness isn't real, I knew I had to do something.
Most mental health professionals forget that most members of our society do not believe in mental illness. What do you think of when you hear the term "mental illness"?
Certainly there are individuals with mental illness who are stupid, lazy, weak of character, dangerous, drug-addled, and out-of-touch with God - but these conditions are conincidental; not the primary nature of their condition.
We, in the mental health profession have confused the issue by talking about "physical vs "mental illnesses, as though mental illnesses were meta-physical. they are not. Mental illnesses are real illness, which operate under the laws of physics, physiology and bio-chemistry.
People with major mental illness, schizophrenia for example, have brains that don't look or work the same as those with healthy brains. Autopsies reveal striking differences in the size and texture of different cerebral lobes; brain scans reveal different patterns of electrical activity; fluid samples reveal different concentrations of the chemicals which transmit thoughts.
Schizophrenia's effect on the brain: while
patients performed a working memory task,
the less the prefrontal cortex (red)
activated, the more dopamine increased
in the striatum (green). Source: Andreas
Meyer-Lindenberg, M.D., Ph.D., NIMH Clinical Brain Disorders Branch
Image source wikimedia commons
We don't understand the physics of the brain very well because the brain is our most complex organ and we have only recently begun to study it, but there is little doubt that hallucinations and delusions are based on organic dysfunction. We may not believe the guy who is claiming to receive radio signals though his dental work but that doesn't mean that he isn't experiencing it.
The fact that we don't understand these diseases very well, and can't cure them, doesn't mean they aren't real.
Most mental health professionals forget that most members of our society do not believe in mental illness. What do you think of when you hear the term "mental illness"?
- Mental illness is imaginary
- Those people are stupid
- Those people are lazy
- Those people are weak
- Those people have screwed their minds with drugs
- Those people need to find God
- They are controlled by "spiritual possession"
- (and worst of all) those people are dangerous
Certainly there are individuals with mental illness who are stupid, lazy, weak of character, dangerous, drug-addled, and out-of-touch with God - but these conditions are conincidental; not the primary nature of their condition.
We, in the mental health profession have confused the issue by talking about "physical vs "mental illnesses, as though mental illnesses were meta-physical. they are not. Mental illnesses are real illness, which operate under the laws of physics, physiology and bio-chemistry.
People with major mental illness, schizophrenia for example, have brains that don't look or work the same as those with healthy brains. Autopsies reveal striking differences in the size and texture of different cerebral lobes; brain scans reveal different patterns of electrical activity; fluid samples reveal different concentrations of the chemicals which transmit thoughts.
Schizophrenia's effect on the brain: whilepatients performed a working memory task,
the less the prefrontal cortex (red)
activated, the more dopamine increased
in the striatum (green). Source: Andreas
Meyer-Lindenberg, M.D., Ph.D., NIMH Clinical Brain Disorders Branch
Image source wikimedia commons
We don't understand the physics of the brain very well because the brain is our most complex organ and we have only recently begun to study it, but there is little doubt that hallucinations and delusions are based on organic dysfunction. We may not believe the guy who is claiming to receive radio signals though his dental work but that doesn't mean that he isn't experiencing it.
The fact that we don't understand these diseases very well, and can't cure them, doesn't mean they aren't real.
Friday, August 29, 2008
Myth: Consumer Input
Obviously, consumers have opinions and legitimate perspectives; it’s the term “input” that I call a myth, because it implies that someone is listening.
In my job, I bump up against numerous efforts to solicit “consumer input.” One thing I’ve noticed is that mental health professionals are really bad at it. Professionals come to these events with our own personal bias about what the “problem” is and what should be done about it. We “listen” only for corroboration and validation of our existing opinions, and we close our ears to any opinions which conflict.
A hearing I attended last week was typical. A small group of well-intentioned professionals recruited a large group of “consumers” to an “Open Forum” regarding mental health policy. After the standard introduction about how interested professionals are in knowing what consumers think, they “opened” the floor.
Consumer after consumer rose to express their frustration with how the mental health system had failed/was continuing to fail to meet their needs. And as always happens, the professionals cut them off, explaining that “we really don’t have time today to discuss all these individual issues and misunderstandings; we’re here to talk about the big picture.”
I am sympathetic with the people who run these meetings to a degree; they didn’t personally cause the problem and they sure can’t fix it. But they entirely miss the point when they refuse to listen. The big picture is that the system doesn't work...for EVERYONE.
If they would have listened, they would understand that people's needs are not being met by the mental health system. Fact is, most people with serious mental illness are served poorly or not at all. Aren't they being paid to help people get the services they need? We need to start listening! Otherwise, what's the point of Consumer Input anyway?
In my job, I bump up against numerous efforts to solicit “consumer input.” One thing I’ve noticed is that mental health professionals are really bad at it. Professionals come to these events with our own personal bias about what the “problem” is and what should be done about it. We “listen” only for corroboration and validation of our existing opinions, and we close our ears to any opinions which conflict.
A hearing I attended last week was typical. A small group of well-intentioned professionals recruited a large group of “consumers” to an “Open Forum” regarding mental health policy. After the standard introduction about how interested professionals are in knowing what consumers think, they “opened” the floor.
Consumer after consumer rose to express their frustration with how the mental health system had failed/was continuing to fail to meet their needs. And as always happens, the professionals cut them off, explaining that “we really don’t have time today to discuss all these individual issues and misunderstandings; we’re here to talk about the big picture.”
I am sympathetic with the people who run these meetings to a degree; they didn’t personally cause the problem and they sure can’t fix it. But they entirely miss the point when they refuse to listen. The big picture is that the system doesn't work...for EVERYONE.
If they would have listened, they would understand that people's needs are not being met by the mental health system. Fact is, most people with serious mental illness are served poorly or not at all. Aren't they being paid to help people get the services they need? We need to start listening! Otherwise, what's the point of Consumer Input anyway?
Thursday, July 10, 2008
Giving Back
This is unusual for me to post 2 blogs in a day but today, I'm so proud.
A few weeks ago, a client who usually cleans our offices, Steve Erickson, asked "Why don't we help Iowa?" I have to admit that I was a little apathetic about it but I asked if any staff would be willing to help put a trip together.
On Wednesday, a crew of 6, 3 clients and 3 staff, left to go to Iowa City to help the United Way of Johnson County with flood clean-up.
This morning, I woke up to 2 articles written about our crew who were cleaning up rancid garbage and moving sandbags. And of course, there was Steve, in his humble way saying that he was just moved by the disaster areas he saw on TV. He just wanted to help.
This isn't the first time Tasks clients have given back using their own vacation time to volunteer and help others. There were crews that went to Grand Forks, ND and Appalachia. But this time, people noticed that those who are so often mistaken to be burdens of society are not, they can be regular people. No, they're not regular people, they're extraordinary people.
Thursday, July 3, 2008
It's a Hoax. Part II
A few weeks ago, I responded to a Minneapolis Star Tribune series regarding Minnesota's Sex Offender Program (MSOP) which is located in Moose Lake. The Strib says that the facts raise the question, "Is MSOP really mental health treatment, or just permanent incarceration?" This is a good question but I can think of some much better questions:
QUESTION 1 - Who gets "committed" to MSOP, and why?
- Eerily similar to Guantanamo, the Strib could only identify two-thirds of detainees.
- A couple, identified by the Strib, seem like pretty bad dudes:
- Dennis Linehan, famous enough that the Strib had a stock photo of him, bears, with missing teeth, a strikin resemblance to Hannibal Lechter.
- Lorenzo Sanchez raped and murdered a 12 year-old. Why doesn't that deserve an old fashioned "life without parole" sentence to prison?
But others identified seem odd choices for a life sentence:
- 10 percent were juveniles when they committed their crime.
- Ben Alverson was in his early 20's when he had "consensual" sex with two girls ages 13 & 14. Where's the pathology here? When I was 20, I was attracted to teenage girls who looked older than they really were. Yes I understand there is no such thing as consensual sex between a 22 year old and a 13 year old (in this state) we have defined such acts as crimes (which is why I backed away when I found out how old the girls were). But Alverson, now 32 years old, already served his prison sentence for said crime.
- Dwane Peterson was convicted of kidnapping an elderly man (the Strib didn't mention a motive, but it did not involve sex) and served his prison sentence for said crime. Then, despite never having committed a sex crime, he was committed to MSOP because of fantasies he admitted to during therapy.
- Isaiah Swedeen was committed to MSOP after disclosing, during treatment, a vaguely homosexual incident from his past, unrelated to any crime he had been charged with. And treatment officials admit that Swedeen doesn't respond to psycho-tropic meds - presumably because he doesn't have mental illness.
QUESTION 2 - Who Works at MSOP?
Stay tuned...
Friday, May 23, 2008
The Price of a Life
The Pioneer Press published a three-part series May 18-20, 2008 regarding the death of a person with mental illness which raised allegations of unethical practices by a U of MN (U) psychiatrist in connection with drug company-sponsored research . It brings me to wonder how we value the life of a person with schizophrenia. Is their life worth the same as anyone else’s?
THE FACTS (as reported by the PP, I have not verified them):
- Dr. Stephen Olson, the U psychiatrist in question, has attracted and conducted several studies sponsored by AstraZeneca, manufacturer of the anti-psychotic drug Seroquel.
- One of the studies focused on people newly diagnosed with/treated for schizophrenia, comparing the effectiveness of Seroquel to two competing drugs.
- Dan Markingson was a participant in this study. Markingson’s mother felt his treatment wasn’t working and asked Olson to drop her son from the study, but to no avail.
- Markingson eventually committed suicide in the bathroom of a St. Paul group home.
- An autopsy revealed no sign of Seroquel or any other anti-psychotic drug in Markinsin’s body.
- Mom sued Olson ,the U and AstraZeneca for causing her son’s death, but the University and AstraZeneca were found to have no responsibility. Mom won a judgment of $75,000 against Olson, reportedly just enough to cover her legal expenses.
- In the end, the study found little difference between the three drugs.
- One in four Minnesota psychiatrists receives “research” money from drug manufacturers.
- According to 2007 figures, 167 Minnesota doctors accepted at least $100,000 from drug companies since 2002.
THE ALLEGATIONS (implied in the PP articles) and TREPP’S TAKES:
But first, a few disclosures:
- As far as I know, I never met Markingson; he has never been served by Tasks Unlimited.
- I have met both Olson and Schulz. Dr Schulz, Director of Psychiatry at the U of MN, is a donor of Tasks Unlimited.
- I am a former Gopher.
- In 2002, my wife received an experimental bone-marrow transplant at the U of MN hospital, which saved her life.
- I wrote the first draft of this blog using a drug company’s ball-point pen.
- Tasks clients have participated in research conducted by Drs. Olson and/or Schulz – but actually very few, because their studies of schizophrenia presume that patients will be motivated to participate by token compensation ($10- 20/visit). Unfortunately, they’re right, because, except at Tasks, schizophrenia renders its victims destitute. [I am intrigued, by the way, that the PP article never refers to the compensation paid directly to Markingson for his participation in the study.]
Allegation: AstraZeneca uses selective information to promote Seroquel.
TT: Duh! That’s what advertising is – every advertisement for a product, service or political candidate that ever appeared in the Pioneer Press uses selective information to promote.
Allegation: Drug companies shouldn’t be allowed to sponsor research on their own products, and it was unethical for the U or Olson to accept money from drug companies, in part because then Olson became financially dependent on AstraZeneca.
TT: Drug manufacturers are the only source of funding for research on the treatment of schizophrenia. The government doesn’t sponsor any Bill Gates doesn’t, that I know of. Is drug company-sponsored research a bargain with the devil? Maybe. But without it, there would be no research at all! And, of course Olson’s salary comes from research money; that’s what sponsorship means. Do you think Pawlenty wants to pay for it? Should they take it out of tuition?
Allegation: Olson (and maybe Dr. Charles Schulz) were recruited by the U for his/their ability to attract research dollars.
TT: No kidding? Next the Pioneer Press is going to reveal that Tubby Smith was recruited to win basketball games.
Allegation: The U’s Institutional Review Board (IRB) is suppose to protect people like Markingson from unscrupulous researchers, and its guidelines specifically prohibit “power-based” coercion, but it doesn’t actually work. Markingson was not competent to consent to participate in the study.
TT: IRB’s are probably a joke, in general, but when it comes to research involving people with schizophrenia, they are a cruel joke, adding time and expense to every research project, but no actual value. IRBs focus on informed consent and full disclosure; neither of which is remotely possible when working with people experiencing psychosis. Of course Markingson wasn’t competent to understand what he was consenting to – the target population for the study was actively psychotic patients. If we really want to insist on informed consent of the subject, there would be no research involving psychosis.
In fact, Olson once told me that the IRB wouldn’t allow him to pay Tasks’ clients more than $20 per visit because adequately compensating them for their time would be coercive. Kind of a Catch 22, don’t you think? You can only participate in this research if you fully understand that it might cause you to commit suicide, and only if you consider $20 adequate compensation for that risk.
Allegation: Olson’s dual/triple role as treating physician, researcher, and witness in involuntary commitment proceedings against Markingson, was improper.
TT: This is not merely common; it’s the norm. Three psychiatrists involved with one patient doesn’t provide better care; it creates chaos. Plus, there is a shortage of psychiatrists in the Twin Cities; and a critical shortage of psychiatrists willing to treat schizophrenics. Quite frankly, it’s not very rewarding, financially or otherwise (unless you work for Tasks, where patients actually recover) – and they get sued a lot.
Allegation: Now the U is suing mom for their legal expenses.
TT: Classy move; makes me proud of that big Maroon M
But ultimately, it’s the facts of this case that are more revealing than the allegations:
- It seems likely (obviously, this is just speculation based on limited data) that the real cause of Markingson’s suicide was untreated schizophrenia. It doesn’t seem to matter whether Markingson was in a research study, whether Olson and the U were profiting from the study, or what medication Olson or anyone else might have prescribed because MARKINGSON WASN’T TAKING IT ANYWAY! [I don’t exactly understand the point of a study comparing patients not taking one drug to other patients not taking something else.]
- Schizophrenia doesn’t respond to psycho-therapy. Effective treatment requires (among other things) the prescribing and taking of medication. The psychiatrist’s role is to prescribe the right medication, but that’s only half the battle. The Tasks program and staff happen to be very good at motivating our clients to take their meds as prescribed. Tragically, only a small percentage of Minnesotans with schizophrenia receive comparable support for this, and Markingson wasn’t one of them.
- The $75,000 Markingson’s mom recovered from Olson seems low. Unless you consider that our legal system routinely assesses the value of a schizophrenics life at less than $75,000. Which also doesn’t seem fair.
On the other hand, if we don’t value these individuals, while they are alive, enough to publicly fund research into their illness, if we don’t care enough to create a system that actually guarantees they will take the medication and get the other services we know will help them, why should we value them at death?
Thursday, May 15, 2008
Veterans Can Lie?
Last week, the federal government announced a new policy related to security clearances for government jobs. They still ask applicants if they have consulted a health care professional in the past 7 years, but as of last week, it is no longer a federal crime to deny having sought mental health counseling IF “the condition was related to service in a combat zone.”
It’s Good News because even though over 4,064 American soldiers have been killed in Iraq, and 29,829 physically maimed, and tens of thousands psychologically damaged by an ill-conceived war, and even though the Veteran’s Administration seems horribly ill-prepared to provide appropriate mental health treatment for the returning hordes of traumatized soldiers, at least our heroic soldiers, many of whom have paid a terrible price in service to their country, won’t be prosecuted for lying on their job application.
But it’s Bad News because we all know that anyone who has ever sought counseling for any sort of emotional stress is forever after incapable productive activity, and thus this new policy will frustrate our burgeoning security-clearance industry’s efforts to ensure that no such persons are ever given an opportunity to earn a living.
The new policy is also bad in that it may provide access, for disabled people, into government-work environments which, as we know, are widely regarded as models of efficiency and productivity – what if one of these veterans landed a job at the post office, a place never previously exposed to mental instability?
But actually, it’s No News because the new policy applies to such a tiny fraction of the workforce – only those traumatized by service in Iraq, and only those applying for government jobs, and, worst of all, only those who have sought treatment. We need to realize that 20% of the population experiences some form of mental health problem during their lifetimes; we need to ensure that none of these damaged Americans ever gets a job.
It’s Good News because even though over 4,064 American soldiers have been killed in Iraq, and 29,829 physically maimed, and tens of thousands psychologically damaged by an ill-conceived war, and even though the Veteran’s Administration seems horribly ill-prepared to provide appropriate mental health treatment for the returning hordes of traumatized soldiers, at least our heroic soldiers, many of whom have paid a terrible price in service to their country, won’t be prosecuted for lying on their job application.
But it’s Bad News because we all know that anyone who has ever sought counseling for any sort of emotional stress is forever after incapable productive activity, and thus this new policy will frustrate our burgeoning security-clearance industry’s efforts to ensure that no such persons are ever given an opportunity to earn a living.
The new policy is also bad in that it may provide access, for disabled people, into government-work environments which, as we know, are widely regarded as models of efficiency and productivity – what if one of these veterans landed a job at the post office, a place never previously exposed to mental instability?
But actually, it’s No News because the new policy applies to such a tiny fraction of the workforce – only those traumatized by service in Iraq, and only those applying for government jobs, and, worst of all, only those who have sought treatment. We need to realize that 20% of the population experiences some form of mental health problem during their lifetimes; we need to ensure that none of these damaged Americans ever gets a job.
Tuesday, April 22, 2008
Cycle of Criminalization
Our society tends toward confusion regarding the needs of people with mental illness; unnecessarily, because it isn’t really so complicated. Even those with serious mental illnesses, like schizophrenia, want, first and foremost, to be normal. They want a good job, a comfortable home, and friends – they want what you want.
Unfortunately, the good job has become almost unattainable, not only because of the very real disability, but also because of numerous barriers our society has created, including the stigma created by Hollywood and a system of financial dis-incentives which penalize a person for entering the work force. Punishing and locking up those with mental illness is not a new idea. .But the most pernicious barrier is the criminalization of mental illness.
We like to imagine that we provide “community treatment” in lieu of hospitalization, and for a small percentage, effective community treatment is a fortunate reality. But has anyone noticed that as the hospital population shrinks, the prison population grows? Does anyone seriously think that’s a coincidence? The National Alliance on Mental Illness (NAMI) reports that, on any given day, there are four times as many people with mental illness in jails and prisons than in hospitals and one in seven inmates in U.S. prisons and jails has a mental illness.
How did they get there? Well, if you call 911 to report a friend or relative experiencing a psychiatric crisis, they don’t send a social worker, they send a cop. It has been explained to me that sending a social worker would be prohibitively expensive. Odd, considering that cops earn more per-hour than social workers. It has also been explained that it would be much too complicated to determine when to dispatch a social worker versus a cop. Odd, considering that when my power goes out, they never send a plumber.
Minneapolis’s Chief of Police brags that 15 percent of his force have had a full week of mental health training. Is that adequate since they report that 40 percent of the calls involve mental illness. And even if a cop has sufficient training to distinguish a mental health crisis from criminal intent, where will he/she take the person? (Hint: the hospitals are always full.)
About 50 years ago, we realized that asylums were a flawed (and expensive) approach, and started closing them. Today, there is less than one-tenth the number of psychiatric hospital beds per-capita than 50 years ago. Does anyone think we have less mental illness? Mental illness, in fact, is on the rise. And yet, resources have decreased. In Minnesota, people who need psychiatric hospitalization are routinely turned away for lack of space.
I know that some will argue that America doesn’t put people in prison unless they actually commit a crime. Okay let’s go with that. But imagine that you were homeless, unemployed, friendless, confused and scared, so you sought help at your local hospital, only to be turned away because your condition didn’t seem as severe as that of others in the waiting room. After a few years, do you think you might commit a crime?
If it were me, and I am thinking fairly straight, I would try for a “victimless” crime – hmmm, I don’t have $4300, so I guess Spitzer’s friend is out. Maybe I could jaywalk or something. But here is a surprising fact: most people experiencing a mental health crisis are not thinking real straight. So they steal food, or they buy drugs, or they scream and holler, or they drive their car into bridge abutments. Whatever it takes…
So now that gaining admittance into any form of health-care facility has become increasingly difficult, and acquiring a criminal record has become increasingly easy, and a criminal record of any kind prevents one from obtaining employment, the circle is complete. If you have schizophrenia, we’re never going to let you have a job. I wonder if that will help with your mental illness?
So, we find ourselves in a peculiar predicament. Mental illnesses are on the rise in our country and adequate resources are diminishing so those who have mental illness can only access varying types of help if they commit crimes. Does that make any sense? There has to be a better way to help those suffering from these very real diseases. There has to be a better way to break this cycle of criminalization and give them the treatment that works so that they can have what all of want: a good job, a comfortable home, and friends.
Unfortunately, the good job has become almost unattainable, not only because of the very real disability, but also because of numerous barriers our society has created, including the stigma created by Hollywood and a system of financial dis-incentives which penalize a person for entering the work force. Punishing and locking up those with mental illness is not a new idea. .But the most pernicious barrier is the criminalization of mental illness.
We like to imagine that we provide “community treatment” in lieu of hospitalization, and for a small percentage, effective community treatment is a fortunate reality. But has anyone noticed that as the hospital population shrinks, the prison population grows? Does anyone seriously think that’s a coincidence? The National Alliance on Mental Illness (NAMI) reports that, on any given day, there are four times as many people with mental illness in jails and prisons than in hospitals and one in seven inmates in U.S. prisons and jails has a mental illness.
How did they get there? Well, if you call 911 to report a friend or relative experiencing a psychiatric crisis, they don’t send a social worker, they send a cop. It has been explained to me that sending a social worker would be prohibitively expensive. Odd, considering that cops earn more per-hour than social workers. It has also been explained that it would be much too complicated to determine when to dispatch a social worker versus a cop. Odd, considering that when my power goes out, they never send a plumber.
Minneapolis’s Chief of Police brags that 15 percent of his force have had a full week of mental health training. Is that adequate since they report that 40 percent of the calls involve mental illness. And even if a cop has sufficient training to distinguish a mental health crisis from criminal intent, where will he/she take the person? (Hint: the hospitals are always full.)
About 50 years ago, we realized that asylums were a flawed (and expensive) approach, and started closing them. Today, there is less than one-tenth the number of psychiatric hospital beds per-capita than 50 years ago. Does anyone think we have less mental illness? Mental illness, in fact, is on the rise. And yet, resources have decreased. In Minnesota, people who need psychiatric hospitalization are routinely turned away for lack of space.
I know that some will argue that America doesn’t put people in prison unless they actually commit a crime. Okay let’s go with that. But imagine that you were homeless, unemployed, friendless, confused and scared, so you sought help at your local hospital, only to be turned away because your condition didn’t seem as severe as that of others in the waiting room. After a few years, do you think you might commit a crime?
If it were me, and I am thinking fairly straight, I would try for a “victimless” crime – hmmm, I don’t have $4300, so I guess Spitzer’s friend is out. Maybe I could jaywalk or something. But here is a surprising fact: most people experiencing a mental health crisis are not thinking real straight. So they steal food, or they buy drugs, or they scream and holler, or they drive their car into bridge abutments. Whatever it takes…
So now that gaining admittance into any form of health-care facility has become increasingly difficult, and acquiring a criminal record has become increasingly easy, and a criminal record of any kind prevents one from obtaining employment, the circle is complete. If you have schizophrenia, we’re never going to let you have a job. I wonder if that will help with your mental illness?
So, we find ourselves in a peculiar predicament. Mental illnesses are on the rise in our country and adequate resources are diminishing so those who have mental illness can only access varying types of help if they commit crimes. Does that make any sense? There has to be a better way to help those suffering from these very real diseases. There has to be a better way to break this cycle of criminalization and give them the treatment that works so that they can have what all of want: a good job, a comfortable home, and friends.
Monday, March 31, 2008
Introduction
It seems appropriate that I would introduce myself...this being my very first blog. I am John Trepp. I'm still not quite sure what it means to blog. I think it's where I can call bullshit, bullshit.
I have worked for Tasks Unlimited for the last 30 years. Tasks is a non-profit based in Minneapolis serving adults with mental illness. We follow the Fairweather Model which creates an environment where people with schizophrenia and bi-polar disorders can manage their illnesses and lead productive, “normal” lives. I am constantly amazed by the accomplishments of Tasks clients – people who have been told they can’t work or lead normal lives because of their illness, but do so anyway.
Along the way, I have been involved in The Barbara Schneider Foundation, the Coalition for Community Living, the Minnesota Association of Community Rehabilitation Organizations, the Minnesota Extended Employment Advisory Committee, the Hennepin County Mental Health Advisory Committee, the Task Force for Redesign of the Civilian Review Authority, and other related activities. I also wrote a collection of short stories, Lodge Magic, and a stage play (a dark comedy) by the same name, which was a big hit at the Minnesota Fringe Festival.
Through my years, I have found our public mental health care system dysfunctional – mostly because it is designed to meet the needs of staff, not the needs of the service consumer, nor the interests of the general public. My hope is to influence and empower those interested in mental health care to make real change. My passion is to see those with mental illness find what they want most in life, a good job, a nice place to live, and meaningful relationships. My dream is a system which is accountable to those served and those who pay for it.
I have worked for Tasks Unlimited for the last 30 years. Tasks is a non-profit based in Minneapolis serving adults with mental illness. We follow the Fairweather Model which creates an environment where people with schizophrenia and bi-polar disorders can manage their illnesses and lead productive, “normal” lives. I am constantly amazed by the accomplishments of Tasks clients – people who have been told they can’t work or lead normal lives because of their illness, but do so anyway.
Along the way, I have been involved in The Barbara Schneider Foundation, the Coalition for Community Living, the Minnesota Association of Community Rehabilitation Organizations, the Minnesota Extended Employment Advisory Committee, the Hennepin County Mental Health Advisory Committee, the Task Force for Redesign of the Civilian Review Authority, and other related activities. I also wrote a collection of short stories, Lodge Magic, and a stage play (a dark comedy) by the same name, which was a big hit at the Minnesota Fringe Festival.
Through my years, I have found our public mental health care system dysfunctional – mostly because it is designed to meet the needs of staff, not the needs of the service consumer, nor the interests of the general public. My hope is to influence and empower those interested in mental health care to make real change. My passion is to see those with mental illness find what they want most in life, a good job, a nice place to live, and meaningful relationships. My dream is a system which is accountable to those served and those who pay for it.
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