Posts
Tuesday, December 22, 2009
why not permanent housing?
It must be near the top complaint of parents and individuals with mental illness in the state-assisted so-called treatment apartments that the state considers these apartments only temporary for that tenant. Why can't the state people accept reality that our relatives don't want to be told they must move within three years or less once they've been placed in a decent, suitable apartment, where they meet friends and get used to transportation routines and feel safe and familiar in it. For years NAMI members have banged the door of the state poobahs in Albany and exhorted policy makers to change the policy that declares these licensed congregate care units (there are several thousand statewide) non-permanent housing. Anyone who has ever been forced from their home knows the anguish it causes to be told to move. Our not for profit housing providers in Schenectady have shown good sense while observing state policy. They've often recognized that a person's needs come first rather than slavishly observing a poor policy that doesn't always fit. So they let some tenants stay on many years in a licensed unit. We were told years ago by a manager for Mohawk Opportunities that they won't move out someone who has greater need for that level of supervision (case manager visits, for example) than if he or she were placed in supported housing. They work this out with the tenant who has leeway to stay on if satisfied where he or she is. The state Office of Mental Health, meanwhile, seems to have a policy it knows doesn't always work, agreeing people should be moved out only if they've gained skills while in the treatment apartments to live more independently. And if they haven't advanced, at least upstate, they can stay on. We hope the good sense prevails, that people still in need of supervision won't be forced to move from assisted housing and the state will add to its housing inventory to solve the bigger problem. (Roy Neville)
Wednesday, December 9, 2009
People with mental illness are getting muscled to kick the cigarette habit-- why not leave some of them alone?
This is a bit contrary. Let's start with observations. Cigarette smoking is on the decline except for people with mental illness who now smoke about half the cigarettes sold in the US (who's counting?) These people must therefore find personal satisfaction with cigarettes despite the state's attempt to paint them as evil and price them beyond what poor people can afford. Smoking causes early death from health problems that include emphysema, heart disease, high blood pressure and cancer. But overweight causes these too, and smoking keeps your weight down. It's the medicines' side effects and peoples' lifestyles that cause overweight so why do doctors prescribe medicines that have such pernicious effects? Well, they are more concerned with regulating symptoms of your disease; that's why you get Risperdal or Zyprexa which blow you up like a ball in a matter of weeks.
Why are so many smokers lounging around outside the club? Doctors writing in the OMH News,August 2009, say family, friends and clients have viewed cigarettes as a way to ease the stress associated with mental illness. Nicotine is seen as helping to relieve symptoms and lessen the side effects of medicines. So, whether true or false, nobody's riding herd on these patients and the doctors want professionals to push people to quit more aggressively. They now counsel treatment to reduce tobacco dependence in combination with nicotine replacement therapy or medication that reduces craving.
That's all well and good but what feels good to someone who experiences the unpleasantness of stress as part of daily life, won't be exchanged for nicotine gum, some pills or pushups at the health spa without really pressing incentives. There's another point. Withdrawal brings its own pains, something these people are going to avoid like the plague. One explanation is that withdrawal symptoms can be confused with worsening of the emotional symptoms of their illness—people get irritable, depressed, anxious, or intense--and they fear this happening.
The state Office of Mental Health is adding muscle to its campaign for tobacco cessation. It wants outpatient clinic programs in state facilities to regularly check on their clients' smoking status and urge smokers to enter a smoking cessation project. Personalized recovery services (PROS), coming to Schenectady's Ellis mental health clinic soon, will pay Ellis to feature tobacco abstinence treatment. Providers are to receive training online to work on this. It will become more prominently part of combined mental health and addiction treatment.
A more guarded approach from NAMI
NAMI national has a guarded policy for smoking and wellness, trying to accommodate voices of smokers who are patients with the role of the guardians over their lives. NAMI wants education and support so people can make healthy choices in their lives. It says “smoking has been inappropriately accepted and even encouraged in therapeutic settings for treatment and recovery. Access to smoking is sometimes used coercively and can be a source of disruption in treatment facilities. Smoking and other tobacco use also increase stigma. NAMI encourages smoke free and tobacco free environments in treatment and other health care facilities, group centers and common areas in housing, including prohibiting smoking and other tobacco use by health care providers, caregivers and others working in and visiting such facilities, centers and housing. NAMI opposes any practice that uses access to smoking and tobacco as a form of coercion or reward.”
At the same time, the policy continues, “NAMI recognizes that the best time to provide and support smoking and other tobacco use cessation is not when consumers are in crisis because such treatment may exacerbate psychiatric symptoms and other conditions. Nicotine addiction is powerful and withdrawal is difficult for the general population, so it is particularly difficult for individuals experiencing a psychiatric crisis.”
A personal view is that the state and various hospitals and health authorities have mobilized huge resources to go after smokers at this late hour. We've known for almost half a century about cancer producing effects of cigarette smoking from huge federal studies done back then. State hospitals have forbidden smoking by patients and staff on campus for at least 10 years. It's against state law to smoke in restaurants, hospitals, almost every public facility and most places of employment. Millions of dollars are being spent to wring the habit out of the last remnant of smokers. The ones who persist can't or won't give it up. Many of them are mentally ill. Why not let them continue? Is this really an epidemic? The relatively small number involved does not seem to justify the massive resources aligned against them. Like children with a natural tendency to be hyperactive, do we need to classify them as disordered and stick them on Prozac?
For the smokers who puff their cigarettes outside in the cold these days, finding solace in the company of others like themselves, giving up the habit may be too much. With an eye on all the dollars the state throws at the problem, a better answer might be to Let them be! (Roy Neville)
Why are so many smokers lounging around outside the club? Doctors writing in the OMH News,August 2009, say family, friends and clients have viewed cigarettes as a way to ease the stress associated with mental illness. Nicotine is seen as helping to relieve symptoms and lessen the side effects of medicines. So, whether true or false, nobody's riding herd on these patients and the doctors want professionals to push people to quit more aggressively. They now counsel treatment to reduce tobacco dependence in combination with nicotine replacement therapy or medication that reduces craving.
That's all well and good but what feels good to someone who experiences the unpleasantness of stress as part of daily life, won't be exchanged for nicotine gum, some pills or pushups at the health spa without really pressing incentives. There's another point. Withdrawal brings its own pains, something these people are going to avoid like the plague. One explanation is that withdrawal symptoms can be confused with worsening of the emotional symptoms of their illness—people get irritable, depressed, anxious, or intense--and they fear this happening.
The state Office of Mental Health is adding muscle to its campaign for tobacco cessation. It wants outpatient clinic programs in state facilities to regularly check on their clients' smoking status and urge smokers to enter a smoking cessation project. Personalized recovery services (PROS), coming to Schenectady's Ellis mental health clinic soon, will pay Ellis to feature tobacco abstinence treatment. Providers are to receive training online to work on this. It will become more prominently part of combined mental health and addiction treatment.
A more guarded approach from NAMI
NAMI national has a guarded policy for smoking and wellness, trying to accommodate voices of smokers who are patients with the role of the guardians over their lives. NAMI wants education and support so people can make healthy choices in their lives. It says “smoking has been inappropriately accepted and even encouraged in therapeutic settings for treatment and recovery. Access to smoking is sometimes used coercively and can be a source of disruption in treatment facilities. Smoking and other tobacco use also increase stigma. NAMI encourages smoke free and tobacco free environments in treatment and other health care facilities, group centers and common areas in housing, including prohibiting smoking and other tobacco use by health care providers, caregivers and others working in and visiting such facilities, centers and housing. NAMI opposes any practice that uses access to smoking and tobacco as a form of coercion or reward.”
At the same time, the policy continues, “NAMI recognizes that the best time to provide and support smoking and other tobacco use cessation is not when consumers are in crisis because such treatment may exacerbate psychiatric symptoms and other conditions. Nicotine addiction is powerful and withdrawal is difficult for the general population, so it is particularly difficult for individuals experiencing a psychiatric crisis.”
A personal view is that the state and various hospitals and health authorities have mobilized huge resources to go after smokers at this late hour. We've known for almost half a century about cancer producing effects of cigarette smoking from huge federal studies done back then. State hospitals have forbidden smoking by patients and staff on campus for at least 10 years. It's against state law to smoke in restaurants, hospitals, almost every public facility and most places of employment. Millions of dollars are being spent to wring the habit out of the last remnant of smokers. The ones who persist can't or won't give it up. Many of them are mentally ill. Why not let them continue? Is this really an epidemic? The relatively small number involved does not seem to justify the massive resources aligned against them. Like children with a natural tendency to be hyperactive, do we need to classify them as disordered and stick them on Prozac?
For the smokers who puff their cigarettes outside in the cold these days, finding solace in the company of others like themselves, giving up the habit may be too much. With an eye on all the dollars the state throws at the problem, a better answer might be to Let them be! (Roy Neville)
Should the mentally ill be allowed to refuse to take their medicine?
It's really the same question all over again, explained very well in an editorial in the Boston Globe back in 2002, as follows: “Research shows that almost half of those with schizophrenia have an impaired awareness of their illness. This impairment, called anosognosia by neurologists, is caused by damage to areas of the brain that mediate self-awareness. The impaired awareness is thus biological in origin, similar to that seen in Alzheimers's disease, and may vary in degree from individual to individual and even in the same individual over time. It is not the same as denial, a psychological mechanism that we all use at times. This lack of awareness may explain why a number of the mentally ill are inconsistent in taking their medications, antipsychotic drugs that can help stabilize moods or eliminate delusions.
Dr. E. Fuller Torrey is one of the authors who supply us with the evidence about anosognosia.“Impaired awareness of illness is a major problem because it is the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications," trumpets a page from the Treatment Advocacy Center in Virginia, where Dr. Torrey is the principal writer. "It is caused by damage to specific parts of the brain, especially the right hemisphere.”
Evidently that's the part that mediates self awareness. But do you mean that people with schizophrenia aren't self aware? The same people get around town every day, get up in the morning, take breakfast, go off to work or program, meet counselors, take pills, talk to friends, enjoy a read in the library? Do they do it all in a trance?
Now for the failure to take medicine. That's mainly because they hate what it does to their mind and body. It stretches them out, knocks them out, makes them listless and foggy minded. They lose any energy, any appetite, any sex drive. And they still have the hallucinations and delusions that are hallmarks of the disease. In Fuller Torrey's “Surviving Schizophrenia” he describes the knockout punch of schizophrenia: “Those of us who have not had this disease should ask ourselves, for example how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically.This would certainly be burden enough for any human being to have to bear, but what if in addition to this, those closest to us began to avoid us or ignore us,to pretend that they didn't hear our comments, to pretend that they didn't notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?”
So there are a lot of reasons, to my mind, for the person who realizes he or she is not thinking clearly or feeling right to act contrary or belligerent. And several reasons why they'll defy others, like parents and doctors, to take medicine when it's urged on them. Sometimes we've found it takes a friend or trusted medical professional to step in and make the visit with them to the clinic or doctor's office. It's always worth trying to get them there, whether it's their lack of self-awareness or just contrariness that keeps them aloof, arbitrary and unwilling to go along with what we want.(Roy Neville)
Dr. E. Fuller Torrey is one of the authors who supply us with the evidence about anosognosia.“Impaired awareness of illness is a major problem because it is the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications," trumpets a page from the Treatment Advocacy Center in Virginia, where Dr. Torrey is the principal writer. "It is caused by damage to specific parts of the brain, especially the right hemisphere.”
Evidently that's the part that mediates self awareness. But do you mean that people with schizophrenia aren't self aware? The same people get around town every day, get up in the morning, take breakfast, go off to work or program, meet counselors, take pills, talk to friends, enjoy a read in the library? Do they do it all in a trance?
Now for the failure to take medicine. That's mainly because they hate what it does to their mind and body. It stretches them out, knocks them out, makes them listless and foggy minded. They lose any energy, any appetite, any sex drive. And they still have the hallucinations and delusions that are hallmarks of the disease. In Fuller Torrey's “Surviving Schizophrenia” he describes the knockout punch of schizophrenia: “Those of us who have not had this disease should ask ourselves, for example how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically.This would certainly be burden enough for any human being to have to bear, but what if in addition to this, those closest to us began to avoid us or ignore us,to pretend that they didn't hear our comments, to pretend that they didn't notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?”
So there are a lot of reasons, to my mind, for the person who realizes he or she is not thinking clearly or feeling right to act contrary or belligerent. And several reasons why they'll defy others, like parents and doctors, to take medicine when it's urged on them. Sometimes we've found it takes a friend or trusted medical professional to step in and make the visit with them to the clinic or doctor's office. It's always worth trying to get them there, whether it's their lack of self-awareness or just contrariness that keeps them aloof, arbitrary and unwilling to go along with what we want.(Roy Neville)
When they don't know they're ill, how can we blame them for what they do?
All together now, say Anosognosia!
This little poke at the establishment divides itself into two parts:1) questioning the claim that anosognosia is a brain disease that psychiatrists say shows that many people with schizophrenia and bipolar disorder can't understand that they are mentally ill. And 2) whether we are correct to let people with an intractable brain disease be freed from responsibility for their acts.
First, according to the neurologists, we seem to be talking about those with a brain “freezeup”-those who are so out of reality they don't know they are sick. And therefore they can thwart the norms and rules of society, refuse to take medicine, fall under the spell of their hallucinations and run afoul of the law. They don't know what they're doing, so why blame them? Well, they may just know more than researchers say they do.
In my experience, for the minority of people with schizophrenia who are profoundly affected, I find people do not act so blindly. Instead, I think they know they're different but they can't change their thinking and behavior--it's wired into their brains. And it's reinforced by society. They won't admit something is wrong with them because of how we react to them. They don't like what medicines make them feel like so they won't take them. They are non-compliant on purpose, not innocently. They can be manipulative and forcefully clear in expressing what they want and don't want to a doctor, counselor or disputing parent. We observe them as young men and women fully able to draw themselves up with whatever dignity and self respect they have to tell off their doting parents and doting doctors and underage social workers. We keep trying to change and repress their behavior. They want to have a good time now and then by drinking beer or smoking a joint. And they catch hell. “What do you want from us?” they seethe. “Look at the life you have for us.” I heard it the other night at the relatives support group-- a parent told how his son screamed back at him: “You don't know what I'm feeling! Give me some space!” Yep, they need space.
And if they are ill, should we hold them responsible for their acts?
This is sanctified territory to talk about blaming. Does someone's mental illness relieve him of responsibility for his acts? That is, is he helpless to change his ways because of a disorder called anosognosia? I think we have to accept that some people because of the illness, whether they know what they do or not, must be treated differently in society and under the law. And our courts are trying here in Schenectady to make allowances, to provide alternative hearings and sentencing and substituting treatment for jail when possible. The prison system hasn't awakened yet, it still treats prisoners who are mentally ill with disdain and a harshness unreserved for any other group; its use of solitary confinement for large numbers of these prisoners is one of the great injustices of our times.
In many other respects people with mental illness are expected to conform to society's rules and norms. We want them to thrive, live among us as independently as possible, accepted by their neighbors, landlords, employers, shopkeepers. Blessed with good treatment, most people with severe brain illness can at least partially recover, reshape their behavior and become responsible citizens.
Still, we know those with schizophrenia and the other severe mental illnesses lack insight, they lack skill in judgment, they act impetuously, they think in their own confining terms and fail to see the larger world around them. Those traits usually don't disappear and mean that someone who is brain-disordered will need life-long help and support. Those who can't live safely and peacefully in society may need to be separated from the others, in humane ways. In NY State we have Kendra's law as a method of shifting someone into outpatient treatment and then into more confined care if he doesn't respond to treatment. Even then, say advocates of a sterner policy, those who demonstrate they are dangerous should not be allowed to live among us. Too many tragic episodes are the clear result of not identifying these individuals ahead of time and putting them in custody.
The view is demonstrably contrary to law and policy, how the courts have ruled on these issues and how police agencies enforce the law. It's the most common complaint heard from families of the mentally ill around the nation that the state won't act to protect their son or daughter, husband or wife from hurting themselves or others. Rising against this are assorted voices in the consumer movement, unwilling to accept that dangerous behavior of a few threatens all of us. They oppose all restrictions on individual liberty and will accept the occasional violence and other personal tragedies as costs to be borne in order to uphold one's priceless liberty. But by letting someone off the hook, they breed contempt for the very people they seek to defend. Society, too, must be blamed for failing to come to grips with the reality that these powerful diseases have devastating effects on the mind. (Roy Neville)
This little poke at the establishment divides itself into two parts:1) questioning the claim that anosognosia is a brain disease that psychiatrists say shows that many people with schizophrenia and bipolar disorder can't understand that they are mentally ill. And 2) whether we are correct to let people with an intractable brain disease be freed from responsibility for their acts.
First, according to the neurologists, we seem to be talking about those with a brain “freezeup”-those who are so out of reality they don't know they are sick. And therefore they can thwart the norms and rules of society, refuse to take medicine, fall under the spell of their hallucinations and run afoul of the law. They don't know what they're doing, so why blame them? Well, they may just know more than researchers say they do.
In my experience, for the minority of people with schizophrenia who are profoundly affected, I find people do not act so blindly. Instead, I think they know they're different but they can't change their thinking and behavior--it's wired into their brains. And it's reinforced by society. They won't admit something is wrong with them because of how we react to them. They don't like what medicines make them feel like so they won't take them. They are non-compliant on purpose, not innocently. They can be manipulative and forcefully clear in expressing what they want and don't want to a doctor, counselor or disputing parent. We observe them as young men and women fully able to draw themselves up with whatever dignity and self respect they have to tell off their doting parents and doting doctors and underage social workers. We keep trying to change and repress their behavior. They want to have a good time now and then by drinking beer or smoking a joint. And they catch hell. “What do you want from us?” they seethe. “Look at the life you have for us.” I heard it the other night at the relatives support group-- a parent told how his son screamed back at him: “You don't know what I'm feeling! Give me some space!” Yep, they need space.
And if they are ill, should we hold them responsible for their acts?
This is sanctified territory to talk about blaming. Does someone's mental illness relieve him of responsibility for his acts? That is, is he helpless to change his ways because of a disorder called anosognosia? I think we have to accept that some people because of the illness, whether they know what they do or not, must be treated differently in society and under the law. And our courts are trying here in Schenectady to make allowances, to provide alternative hearings and sentencing and substituting treatment for jail when possible. The prison system hasn't awakened yet, it still treats prisoners who are mentally ill with disdain and a harshness unreserved for any other group; its use of solitary confinement for large numbers of these prisoners is one of the great injustices of our times.
In many other respects people with mental illness are expected to conform to society's rules and norms. We want them to thrive, live among us as independently as possible, accepted by their neighbors, landlords, employers, shopkeepers. Blessed with good treatment, most people with severe brain illness can at least partially recover, reshape their behavior and become responsible citizens.
Still, we know those with schizophrenia and the other severe mental illnesses lack insight, they lack skill in judgment, they act impetuously, they think in their own confining terms and fail to see the larger world around them. Those traits usually don't disappear and mean that someone who is brain-disordered will need life-long help and support. Those who can't live safely and peacefully in society may need to be separated from the others, in humane ways. In NY State we have Kendra's law as a method of shifting someone into outpatient treatment and then into more confined care if he doesn't respond to treatment. Even then, say advocates of a sterner policy, those who demonstrate they are dangerous should not be allowed to live among us. Too many tragic episodes are the clear result of not identifying these individuals ahead of time and putting them in custody.
The view is demonstrably contrary to law and policy, how the courts have ruled on these issues and how police agencies enforce the law. It's the most common complaint heard from families of the mentally ill around the nation that the state won't act to protect their son or daughter, husband or wife from hurting themselves or others. Rising against this are assorted voices in the consumer movement, unwilling to accept that dangerous behavior of a few threatens all of us. They oppose all restrictions on individual liberty and will accept the occasional violence and other personal tragedies as costs to be borne in order to uphold one's priceless liberty. But by letting someone off the hook, they breed contempt for the very people they seek to defend. Society, too, must be blamed for failing to come to grips with the reality that these powerful diseases have devastating effects on the mind. (Roy Neville)
Paying psychiatric patients to take medicine raises ethical questions
Here's an article in Treatment Advocacy Center e-News about a team at Queen Mary Hospital in London starting a study of the effectiveness of paying patients with schizophrenia and bipolar disorder to take their medicine. It's not a new idea, points out E. Fuller Torrey, the psychiatric researcher who has written the article and advocates for it. The 136 patients “have a very poor track record for taking their medication” and are all on long acting antipsychotics which they receive by injection every two weeks or so, Dr. Torrey explains. Half of them will be paid about $24 each time they come in for their injection and half will receive no money and will thus be controls. Both groups will be followed to see if the payments make a difference in preventing relapses and rehospitalization.
Now I know it's a common practice in research but it feels wrong. Let me start with the question: Why would you pay people to do something they don't want to do as much as you want them to do it? Some answers: the benefits outweigh the costs. The procedure does no harm. The researchers achieve their objectives. There is freedom of choice for subjects not to take part. And when it comes to severely ill mental patients, say researchers, they may not have the ability to judge whether the transaction is good for them or not because their brains are incapable of doing so (a tack that is also used to permit forcible hospitalization of some patients who might be a danger to themselves or society).
My discomfort is that these acts violate the ethics or morality (take your pick) we live by. Ideally we avoid exploiting groups of people like prisoners or hospital patients or nursing home residents, or even giving the perception of doing so. Who said exploitation? Don't they give up some independent choice to abstain from the research offer? Isn't the offer to pay to take your medicine a more subtle way of coercing behavior that does violate ethics in which people should be free at all times to reject the offer? When you pay people to do your bidding, you expect something in return and that includes more than docile acceptance of the terms of the deal. The patients or prisoners in the study are now part of the program, not really free to criticize it or influence others about going along, and they are faced with the anxiety that they can be punished for doing so (or kicked out of the program). Those who refuse to join not only give up the cash but have to wonder if they will be recriminated against by their superiors and “outed” by their peers. People in institutions think this way.
And those in the programs find ways to circumvent the rules. I seem to remember that someone proposed to pay patients at the Capital District Psychiatric Center a few years ago to take medicine or give up smoking,one or the other. What happened, I think, is that those who joined in and followed the rules were paid but this backfired. Patients were using the money to buy cigarettes for themselves and their friends.
The moral objections I raise do have to balance out against the simple utilitarian value of carrying out research that matters and finding enough people to volunteer for a project. Hospital patients, prisoners and those in old peoples' homes are among the easiest to find and most vulnerable to exploitation, as history shows us. It seems clear if the studies will do harm in any way, such as using medicines or treatments on the patients without safeguards and full disclosure, or doing interventions that expose the patients' lives to others through publicity or shoddy record keeping, or interventions that lead to these patients being regarded differently by others in the institution, then there is moral liability on the part of the researcher. If not, paying them as an incentive to take part in scrupulous research seems consistent with common convention. For example, in the latest NAMI Promise (Syracuse) newsletter, SUNY Upstate Medical University asks for volunteers for a genetic study of schizophrenia. It says all you do is complete a questionnaire, participate in an interview and have your blood drawn. For that you are paid $50 for your “time and inconvenience.” Sounds proper enough, who can argue?
What about paying people to give up bad habits?
Just to carry this further about the questionableness of paying people to do whatever we want--like throwing off bad habits or conforming their behavior to the rest of us—I have some illustrations how this can go awry. Health and wellness are goods that we all strive for. The state plays a large role in promoting our good health. But should the state be judging cigarette smokers as evil, going to great lengths to penalize smoking? Should it impose harsh jail sentences on those who smoke street drugs, lumping marijuana in with far more potent drugs? We would do well to try to understand why so many people take illegal drugs in a speed-up culture like ours and expand treatment opportunities for them rather than impose jail on them for even minor offenses.
We have this terrible problem of drug taking. Young people in school and college flaunt the rules and defy the police and treatment regimes. Why not pay them to give up a street drug habit or cigarette smoking? It won't work--it takes more than small money to motivate people to get off drugs or smoking and stay off. The habits are too strong. Some will fall victim to their addictions. They can't get off the drugs without long term counseling and supports from those around them, perhaps a radical change in lifestyle and direction. They have to believe in the benefits of abstaining. We have to believe they are worth saving, not try to pay them off to give up such worldly sins.
Why don't we pay others to get rid of unwholesome behaviors? For example: pay prostitutes to use safe sex. It would make the profession quite popular. How about getting overweight people to cut down on food consumption? Wouldn't it benefit them greatly? Yes, but in a free society people can choose to overeat and ignore their health. Why don't we just pay people to be good? It doesn't work. There was a time when parishioners who confessed their sins had to buy indulgences from the church in order to receive penance for their sins. That brought on a revolution in the 1500s. It proved the church couldn't make people good by having them pay their way out of sinning and it left an indelible mark on church history.
The arguments go even farther afield about the folly of paying people to solve a problem. None is more upstart and outlandish than Jonathan Swift's proposal to have the poor Irish in his home country sell their infants to the well to do British to cook them up for a hearty meal or two, so the Irish can escape starvation. In his essay “A Modest Proposal” (1729) he argued that “I have been assured by an American of my acquaintance, that a young healthy child well nursed is at a year old a most delicious, nourishing, and wholesome food, whether stewed, roasted, baked, or boiled; and I make no doubt that it will equally serve in a fricassee or a ragout.”
And politicians who get caught in payoffs cross the line into bribery and corruption, when the public interest is involved. That's a long shot away from the more ordinary practices we've discussed but it shows the desire to pay people for their compliance in any setting often has a tinge of immorality about it. (Roy Neville)
Now I know it's a common practice in research but it feels wrong. Let me start with the question: Why would you pay people to do something they don't want to do as much as you want them to do it? Some answers: the benefits outweigh the costs. The procedure does no harm. The researchers achieve their objectives. There is freedom of choice for subjects not to take part. And when it comes to severely ill mental patients, say researchers, they may not have the ability to judge whether the transaction is good for them or not because their brains are incapable of doing so (a tack that is also used to permit forcible hospitalization of some patients who might be a danger to themselves or society).
My discomfort is that these acts violate the ethics or morality (take your pick) we live by. Ideally we avoid exploiting groups of people like prisoners or hospital patients or nursing home residents, or even giving the perception of doing so. Who said exploitation? Don't they give up some independent choice to abstain from the research offer? Isn't the offer to pay to take your medicine a more subtle way of coercing behavior that does violate ethics in which people should be free at all times to reject the offer? When you pay people to do your bidding, you expect something in return and that includes more than docile acceptance of the terms of the deal. The patients or prisoners in the study are now part of the program, not really free to criticize it or influence others about going along, and they are faced with the anxiety that they can be punished for doing so (or kicked out of the program). Those who refuse to join not only give up the cash but have to wonder if they will be recriminated against by their superiors and “outed” by their peers. People in institutions think this way.
And those in the programs find ways to circumvent the rules. I seem to remember that someone proposed to pay patients at the Capital District Psychiatric Center a few years ago to take medicine or give up smoking,one or the other. What happened, I think, is that those who joined in and followed the rules were paid but this backfired. Patients were using the money to buy cigarettes for themselves and their friends.
The moral objections I raise do have to balance out against the simple utilitarian value of carrying out research that matters and finding enough people to volunteer for a project. Hospital patients, prisoners and those in old peoples' homes are among the easiest to find and most vulnerable to exploitation, as history shows us. It seems clear if the studies will do harm in any way, such as using medicines or treatments on the patients without safeguards and full disclosure, or doing interventions that expose the patients' lives to others through publicity or shoddy record keeping, or interventions that lead to these patients being regarded differently by others in the institution, then there is moral liability on the part of the researcher. If not, paying them as an incentive to take part in scrupulous research seems consistent with common convention. For example, in the latest NAMI Promise (Syracuse) newsletter, SUNY Upstate Medical University asks for volunteers for a genetic study of schizophrenia. It says all you do is complete a questionnaire, participate in an interview and have your blood drawn. For that you are paid $50 for your “time and inconvenience.” Sounds proper enough, who can argue?
What about paying people to give up bad habits?
Just to carry this further about the questionableness of paying people to do whatever we want--like throwing off bad habits or conforming their behavior to the rest of us—I have some illustrations how this can go awry. Health and wellness are goods that we all strive for. The state plays a large role in promoting our good health. But should the state be judging cigarette smokers as evil, going to great lengths to penalize smoking? Should it impose harsh jail sentences on those who smoke street drugs, lumping marijuana in with far more potent drugs? We would do well to try to understand why so many people take illegal drugs in a speed-up culture like ours and expand treatment opportunities for them rather than impose jail on them for even minor offenses.
We have this terrible problem of drug taking. Young people in school and college flaunt the rules and defy the police and treatment regimes. Why not pay them to give up a street drug habit or cigarette smoking? It won't work--it takes more than small money to motivate people to get off drugs or smoking and stay off. The habits are too strong. Some will fall victim to their addictions. They can't get off the drugs without long term counseling and supports from those around them, perhaps a radical change in lifestyle and direction. They have to believe in the benefits of abstaining. We have to believe they are worth saving, not try to pay them off to give up such worldly sins.
Why don't we pay others to get rid of unwholesome behaviors? For example: pay prostitutes to use safe sex. It would make the profession quite popular. How about getting overweight people to cut down on food consumption? Wouldn't it benefit them greatly? Yes, but in a free society people can choose to overeat and ignore their health. Why don't we just pay people to be good? It doesn't work. There was a time when parishioners who confessed their sins had to buy indulgences from the church in order to receive penance for their sins. That brought on a revolution in the 1500s. It proved the church couldn't make people good by having them pay their way out of sinning and it left an indelible mark on church history.
The arguments go even farther afield about the folly of paying people to solve a problem. None is more upstart and outlandish than Jonathan Swift's proposal to have the poor Irish in his home country sell their infants to the well to do British to cook them up for a hearty meal or two, so the Irish can escape starvation. In his essay “A Modest Proposal” (1729) he argued that “I have been assured by an American of my acquaintance, that a young healthy child well nursed is at a year old a most delicious, nourishing, and wholesome food, whether stewed, roasted, baked, or boiled; and I make no doubt that it will equally serve in a fricassee or a ragout.”
And politicians who get caught in payoffs cross the line into bribery and corruption, when the public interest is involved. That's a long shot away from the more ordinary practices we've discussed but it shows the desire to pay people for their compliance in any setting often has a tinge of immorality about it. (Roy Neville)
Wednesday, October 21, 2009
Letter to John Allen and Tom O'Clair: rating the counties
Family and consumer representatives John Allen and Tom O'Clair of the NY State Office of Mental Health published a survey rating the counties by how many constituents sat on county community services boards and mental health subcommittees. The idea was to stir up interest, should the county be failing its responsibilities. The way they did it, compiling a staggering table of meaningless data, drew the remarks below.
John Allen andTom O'Clair:
I really don't see any meaning in the table you have sent out to the NAMI organization and its affiliates. Someone at OMH has spent a lot of time putting this together at a time when community mental health services budgets are stretched thin and there has been no growth in services to keep up with the population changes and to see that needed jobs are done by provider agencies. The county offices of community services are understaffed, positions are missing and go unfilled and county political leadership does not promote a vigorous attitude for mental health.
This fact gathering is a misrepresentation about the participation level of families and recipients as well as provider personnel. It has inaccurate data about their participation, about the numbers of meetings and frequency. The county by county scores at the end of the table are laughable attempts to show one county does better than another when the grades have no basis.
There is in fact, very little participation by families and recipients on these county boards and committees. In Schenectady I'm sorry to see things on the downgrade with fewer family members attending, almost no consumers, and almost no directors of agencies. This is a high scoring county in your estimation. Instead, there is low morale, even disinterest, I believe, because mental health budgets are kept low and the Office of Community Services can't staff up promptly. Meetings are infrequent and poorly attended by providers.
I'll tell you what's wrong here, besides wasting taxpayer money on such mind numbing number checking. The OMH has abdicated its responsibility to see that the county community services boards and mental health subcommittees act according to law and regulation. These offices are weak and unorganized. The meetings are held infrequently and not on regular schedules, often being cancelled. These are not formal meetings. there are no minutes kept, no votes taken, no agenda published. No attendance is taken, no written record of continuity as to what was planned and what was accomplished. So a citizen cannot tell what the community services board or its mental health committee does nor what it has done over the years to show for its meetings.
For that matter, most of the parents I meet with in family support groups over here wouldnt know there are such boards and committees and if they do, they do not show interest in joining them when we publicize them. Here's what I want to say. The parents are far more interested in the immediate problems facing them and their adult children with mental disorders. they crave more counseling, advice, talking out their situations, which keep changing, particularly when someone is losing touch and uncontrolled with their illness, getting in trouble with the law, lacking housing, needing medicine, looking for social security and medicaid benefits, trying to work free the bureaucracy and waiting lists to get what they need.
I know both of you are trying to help with those things. And we in NAMI and the hospital support groups go over it again and again. But these necessities are never ending. New parents come along with the same problems and need a helping hand all along the way, the kind of support we need from both of you, as well.
What's wrong is that these citizen boards are set up to see there is leadership at county level with citizens invited on them to see that the private agencies in mental health are doing what they're supposed to and they're properly funded. Without the exposure the agencies don't have to do as good a job or they're far less visible. That's why I write. People in need are being left out. A few years ago mental health subcommittee meetings were attended by many more agencies--in housing and homeless services, family and child, mental health clinic and hospital inpatient, crisis-emergency, Catholic Charities, City Mission, YMCA--as well as families and consumers. I can remember healthy debates about where our county was going and what was missing and should be addressed in mental health. People looked to the county agency to step up and lead. It's not happening now. You can't help feel the difference from a few years ago. (Roy Neville)
John Allen andTom O'Clair:
I really don't see any meaning in the table you have sent out to the NAMI organization and its affiliates. Someone at OMH has spent a lot of time putting this together at a time when community mental health services budgets are stretched thin and there has been no growth in services to keep up with the population changes and to see that needed jobs are done by provider agencies. The county offices of community services are understaffed, positions are missing and go unfilled and county political leadership does not promote a vigorous attitude for mental health.
This fact gathering is a misrepresentation about the participation level of families and recipients as well as provider personnel. It has inaccurate data about their participation, about the numbers of meetings and frequency. The county by county scores at the end of the table are laughable attempts to show one county does better than another when the grades have no basis.
There is in fact, very little participation by families and recipients on these county boards and committees. In Schenectady I'm sorry to see things on the downgrade with fewer family members attending, almost no consumers, and almost no directors of agencies. This is a high scoring county in your estimation. Instead, there is low morale, even disinterest, I believe, because mental health budgets are kept low and the Office of Community Services can't staff up promptly. Meetings are infrequent and poorly attended by providers.
I'll tell you what's wrong here, besides wasting taxpayer money on such mind numbing number checking. The OMH has abdicated its responsibility to see that the county community services boards and mental health subcommittees act according to law and regulation. These offices are weak and unorganized. The meetings are held infrequently and not on regular schedules, often being cancelled. These are not formal meetings. there are no minutes kept, no votes taken, no agenda published. No attendance is taken, no written record of continuity as to what was planned and what was accomplished. So a citizen cannot tell what the community services board or its mental health committee does nor what it has done over the years to show for its meetings.
For that matter, most of the parents I meet with in family support groups over here wouldnt know there are such boards and committees and if they do, they do not show interest in joining them when we publicize them. Here's what I want to say. The parents are far more interested in the immediate problems facing them and their adult children with mental disorders. they crave more counseling, advice, talking out their situations, which keep changing, particularly when someone is losing touch and uncontrolled with their illness, getting in trouble with the law, lacking housing, needing medicine, looking for social security and medicaid benefits, trying to work free the bureaucracy and waiting lists to get what they need.
I know both of you are trying to help with those things. And we in NAMI and the hospital support groups go over it again and again. But these necessities are never ending. New parents come along with the same problems and need a helping hand all along the way, the kind of support we need from both of you, as well.
What's wrong is that these citizen boards are set up to see there is leadership at county level with citizens invited on them to see that the private agencies in mental health are doing what they're supposed to and they're properly funded. Without the exposure the agencies don't have to do as good a job or they're far less visible. That's why I write. People in need are being left out. A few years ago mental health subcommittee meetings were attended by many more agencies--in housing and homeless services, family and child, mental health clinic and hospital inpatient, crisis-emergency, Catholic Charities, City Mission, YMCA--as well as families and consumers. I can remember healthy debates about where our county was going and what was missing and should be addressed in mental health. People looked to the county agency to step up and lead. It's not happening now. You can't help feel the difference from a few years ago. (Roy Neville)
Do we need more screening of patients or more treatment?
The NY State Office of Mental Health has a gaudy document--a new set of guidelines for mental health clinic standards of care that is sure to impact on the mental health clinics up here. It's borne out of a planning document undertaken by a NYC team in 2008 meant to improve services to people with mental illnesses who are at risk for poor outcomes or violence. And that document came about after the woman died in the mental health unit of a Brooklyn hospital and episodes of violence seemed to engulf the city that year.
The OMH is taking up the new standards as part of its renewed licensing process. The idea is to help it decide if a clinic has high standards of care, just adequate ones or ones needing improvement, and if it's the latter, to push the clinics in the higher direction. That's all right but they put too much attention on testing and not enough on treatment, in my opinion.
To the OMH Office of Quality Management:
I have a response to the draft Clinic Standards of Care that you have put out for comment. What is being proposed that is new? Don't we do these things now, that is, question patients during an evaluation about mental health history, drug use, violent and suicide ideation, general physical health? If any of these are missing it's obvious the clinic should get its act together. But to propose a horde of extra features for clinics to follow in the column marked "exemplary" and insist these are the ones recommended for all seems extravagant.
It suggests that you've added sophisticated test batteries, the sort run by psychological testing companies and specialists and you've put more emphasis on quality control. While helpful I doubt if they are essential to the good working of a publicly subsidized mental health clinic. I think they are too costly to justify.
To my mind the real problems to be tackled lie in treating the assortment of people with complicated mental and physical conditions who come to the clinic nowadays. Particularly, those whose problems are largely sociological--stemming from their environment. Now, assessment is coupled with treatment. But it's only part of it and you can't have a treatment clinic that only does assessment. The clinic has to identify the most seriously mentally ill and sort them out from behavior problems like "problems of living"and those who come from stressful situations such as living in poverty, or homelessness or who are drug addicted, or sexually deviant, for instance.
I don't think the screening tests get at these kinds of people. Their main problems are simply outside the standard questions. For example, sexual offenders--what are the treatment options for them? Elderly people with dementia and/or serious mental illness require health care, housing and supports outside the mental health system; large numbers of teenagers and young adults have drug addiction and unsocialized behavior coupled with mental disturbance, coming from conditions in which they grow up; men and women coming out of jail and prison need to be reintegrated into society; people who don't speak English, and are among legal and illegal immigrant populations need all kinds of help, as do those with overlapping mental health and developmental and physical disability, and the people in outlying rural areas who can't easily access health care.
As I understand, more and more people are showing up with variations of mental illnesses and physical disorders which can't easily be separated out at a single evaluation. Yet each disorder needs to be treated in its own right. So the patients are presenting with more complications than formerly. And the screening tools won't make their treatment any easier, will it?
So I suggest instead of promoting more elaborate testing schemes for patients entering the system (while it's important to do evaluations right), what is needed more is for the state Office of Mental Health to add high quality staff to the clinics. We need better trained and better paid people working there, to do more than just offer talk therapy. The staff have to become more expert on benefits and entitlements like SSI and Medicaid; in how to place people in jobs, in housing and support services; how to help them find meals and food pantries, overnight shelter, where to get food stamps and cash assistance, child care, bus passes, an affordable lawyer, for example. That's what's missing now. And it's what gets them through a crisis or with confidence to face another day. (Roy Neville)
The OMH is taking up the new standards as part of its renewed licensing process. The idea is to help it decide if a clinic has high standards of care, just adequate ones or ones needing improvement, and if it's the latter, to push the clinics in the higher direction. That's all right but they put too much attention on testing and not enough on treatment, in my opinion.
To the OMH Office of Quality Management:
I have a response to the draft Clinic Standards of Care that you have put out for comment. What is being proposed that is new? Don't we do these things now, that is, question patients during an evaluation about mental health history, drug use, violent and suicide ideation, general physical health? If any of these are missing it's obvious the clinic should get its act together. But to propose a horde of extra features for clinics to follow in the column marked "exemplary" and insist these are the ones recommended for all seems extravagant.
It suggests that you've added sophisticated test batteries, the sort run by psychological testing companies and specialists and you've put more emphasis on quality control. While helpful I doubt if they are essential to the good working of a publicly subsidized mental health clinic. I think they are too costly to justify.
To my mind the real problems to be tackled lie in treating the assortment of people with complicated mental and physical conditions who come to the clinic nowadays. Particularly, those whose problems are largely sociological--stemming from their environment. Now, assessment is coupled with treatment. But it's only part of it and you can't have a treatment clinic that only does assessment. The clinic has to identify the most seriously mentally ill and sort them out from behavior problems like "problems of living"and those who come from stressful situations such as living in poverty, or homelessness or who are drug addicted, or sexually deviant, for instance.
I don't think the screening tests get at these kinds of people. Their main problems are simply outside the standard questions. For example, sexual offenders--what are the treatment options for them? Elderly people with dementia and/or serious mental illness require health care, housing and supports outside the mental health system; large numbers of teenagers and young adults have drug addiction and unsocialized behavior coupled with mental disturbance, coming from conditions in which they grow up; men and women coming out of jail and prison need to be reintegrated into society; people who don't speak English, and are among legal and illegal immigrant populations need all kinds of help, as do those with overlapping mental health and developmental and physical disability, and the people in outlying rural areas who can't easily access health care.
As I understand, more and more people are showing up with variations of mental illnesses and physical disorders which can't easily be separated out at a single evaluation. Yet each disorder needs to be treated in its own right. So the patients are presenting with more complications than formerly. And the screening tools won't make their treatment any easier, will it?
So I suggest instead of promoting more elaborate testing schemes for patients entering the system (while it's important to do evaluations right), what is needed more is for the state Office of Mental Health to add high quality staff to the clinics. We need better trained and better paid people working there, to do more than just offer talk therapy. The staff have to become more expert on benefits and entitlements like SSI and Medicaid; in how to place people in jobs, in housing and support services; how to help them find meals and food pantries, overnight shelter, where to get food stamps and cash assistance, child care, bus passes, an affordable lawyer, for example. That's what's missing now. And it's what gets them through a crisis or with confidence to face another day. (Roy Neville)
Subscribe to:
Posts (Atom)