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What if a person has no goals?
People at the Collage social club and Ellis continuing day treatment center are being asked about their goals for recovery. It's one of the first questions and it's interwoven with asking them about their dreams, hopes and vision as they learn to get ready for the conversion of their programs to a new one called PROS, or personal recovery oriented services.
In it they'll be expected to work at these goals in individual and group settings with the help and support of others. The program isn't to get going till November. People have to enroll in one of the programs that Ellis Hospital will offer, probably at the continuing treatment site downtown, where classes, workshops, counseling sessions and social and recreational activities can be held.
Everybody is expected to have at least one goal and this ties them to enrollment in PROS. If you reach your goal you can drop out of the program or you can go on to achieve further goals, like education or developing skills you'd like to have, their mentors have told us at meetings.
But what if someone is unable to express any personal goals, has lost the spark to want to achieve something? It's another challenge, another way to look at recovery. You can't recover if you don't have any goals, can you?
There's a very good discussion of goals and how to draw someone out to learn to express them in an article in the July 16 Weekly Highlights on a new website called Recovery to Practice. A shorter version starts below. It's written by Larry Davidson, PhD, and Priscilla Ridgway, PhD, of Yale Department of Psychiatry. It rings true because we don't find our children or their friends in the system talking about goals. They've either given up or never were inspired to shoot for realistic goals. Why hasn't this been addressed before this?
(Davidson and Ridgway:) “This question is raised often by providers who are concerned that the people they work with have given up on whatever hopes, dreams, or aspirations they may have had earlier in life or who have been met with an initial blank stare or a shrug. The process of identifying and setting personal goals provides the foundation for recovery‐oriented practice, however. The question of whether or not people have such goals, therefore, is important.
“Restoring hope--Has this person perhaps become demoralized over time due to repetitive experiences of failures and losses that have been due to mental illness, stigma or discrimination, or a combination of both? Has the person lost hope as a result?
“It can be extremely difficult to have a mental illness, and extremely challenging to carry on one’s life in the face of it. It also may be hard to keep picking up the pieces time and time again when things fall apart, or to continue to believe that the future might be any better than a bleak or desperate present. The presence of a basic sense of hope is crucial to a person identifying any goals for the future. When hope has been lost, it can and must be restored as an essential basis for the person’s active engagement in recovery, and in the central role of identifying and pursuing personally meaningful goals.
“The restoration of hope can come about in a variety of ways, including through the activation of spirituality and faith, experiences of pleasure, and supportive and inspiring social relationships. When a person has lost hope and/or faith, it is crucial that other people continue to carry hope for that person until a time that he or she begins once again to believe that life can get better. Peer staff, who can provide tangible and credible evidence of the possibility of recovery, can be especially effective in instilling hope through their function as role models.
“Regaining interests--It is possible that through the combination of socialization and the lack of means to pursue their interests, people may lose any sense of what they might find interesting or enjoyable. In this case, helping the person to get back in touch with what interested him or her, or what he or she enjoyed, prior to becoming ill may be a useful place to begin the process of re‐igniting or” jump starting” his or her passion. There also is an array of tools, including interests and strengths assessments, that might help the person to recall those things that he or she had found pleasurable or meaningful in the past.
“Finally, there can be no substitute for actual life experience in re‐igniting, or eliciting for the first time, a person’s interest,” Davidson and Ridgway point out. “For some people, simply talking about participating in an activity is just as likely to raise anxiety and introduce doubts as it is to whet his or her appetite for involvement. Especially for people who have become accustomed to viewing life as if from a distance, as something that happens primarily to other people, it may require both encouraging and accompanying the person for him or her to feel comfortable trying new things."
The authors go on to discuss the possibility of co-occurring depression and achieving trust so the person is comfortable enough to share personal information. These and other useful insights are found on the website: http://www.dsgonline.com/rtp/resources.html. (Roy Neville)
Thursday, July 22, 2010
Recovery in psychiatry--part 2
Idealism and optimism at the heart of the recovery movement
The recovery movement in psychiatry is sweeping the day. The state commissioner of mental health calls for a transformation in services to grant mentally ill people a higher level of self-esteem, rights and independence. National policy making bodies like SAMHSA and the Center for Mental Health Services finally come on board with financing for recovery models. The consumer movement is elated off its rocking horse. The state, with little money of its own but a mandate to capture federal Medicaid money, swoops down on provider programs like the social club and continuing day treatment in Schenectady to force their conversion to PROS, which stands for personal recovery oriented services.
The idealists and dreamers are finding full expression in many areas of modern life--like health care, in psychology, how we spend money, in military planning. It's rubbed off in the mistakes they've made, in the false cheerfulness we see in the world around us. People want to buoy each other up when illness strikes a friend, saying things they don't believe, like “you'll get better soon.” They make foolish investments and buy houses without enough collateral to pay for them when the going gets tough. Businessmen, thinking the world has a rosy glow to it, have sunk us in wasteful practices with their easy deals and careless mortgage lending. They refused to face reality.
How do I know? From what I read, it's a matter of ideology. Americans are cheerful people, who think positively, but not often realistically when we have to be. We don't want to think the worst about anybody or anything. We're compulsively optimistic, it's ingrained in us by our culture to look on the bright side of everything. We can't do otherwise than tell sick people they'll get better soon, greet people we don't know with a smile, and try to make others feel better.
That's called positive thinking and where it goes wrong is in the excesses. Read Barbara Ehrenreich's book, “Bright Sided,” about the extravagant way our culture perceives happiness and a better life as an entitlement for all. She claims “the relentless promotion of positive thinking has undermined America.” She writes that in this idealistic age churches preach that you only have to want something to get it because God wants you to prosper. And when she went down with breast cancer recently, she was told she had to battle hard against it in order to join the hallowed body of survivors. A man suffering with prostate cancer was told it was God's will for him to get cancer whether he survived or not. For those not hopeful enough there is plenty of self-blame.
Some of this irrational exuberance naturally has come over to the recovery trends in mental health.
Remission, not recovery
Along the way, the people who promote the recovery movement in psychiatry have found a way to overcome the medical profession's negative thinking about mental patients. That feeling prevailed, according to the movement, as a staple view for some time, labeled the “clinicians illusion.” It was widely held that patients were doing poorly in between visits when they weren't seeing them. Instead, writes Larry Davidson, PhD, a Yale psychologist and lead author of the new website Recovery to Practice, “the evidence suggests that many people recover over time and that when people drop out of treatment,they often are doing better than we might have expected.”
In his Weekly Highlight column recently, Davidson tells how a workgroup of patients, caregivers and clinicians tackled this by introducing the concept of remission of symptoms. The work group decided that a sizable number of patients sustained periods of symptomatic relief and improved functioning, disrupted by episodes of recurrence or relapse. They called these “periods of remission.” Davidson says there is increasing recognition that such improvements are common.
Thus, the “clinician's illusion” has been turned upside down and given way to the concept of remission. If you're in remission you're part way to recovery. Remission means the worst symptoms have gone away and your functioning is better. But it's a long shot from being free of symptoms. There are still people out there with schizophrenia and bipolar who are on the streets and in shelters and in jail and prisons and repeatedly visit emergency rooms. They have periods of remission, too, but they're not moving ahead toward recovery.
Recovery would involve a more demanding and longer term phenomenon in which a person is relatively free of disease and has the ability to function in the community, Davidson writes. He believes that's possible for some people. He cites the Harding study in Vermont years ago as evidence that long- term hospitalized patients can “recover.” But these were older folks and they were moved to serene farm-like villages in the country. Would they have met a different fate in New York City?
I don't see full recovery for people with schizophrenia. I see them "in recovery" or "in remission". Of course, we want them to make it. I remember my friend at a NAMI national meeting years ago confessing that he and his wife felt they gained sensitivity and understanding in bringing up a mentally disabled child. “But I really do wish it was happening to someone else and not me,” he added. (Roy Neville)
The recovery movement in psychiatry is sweeping the day. The state commissioner of mental health calls for a transformation in services to grant mentally ill people a higher level of self-esteem, rights and independence. National policy making bodies like SAMHSA and the Center for Mental Health Services finally come on board with financing for recovery models. The consumer movement is elated off its rocking horse. The state, with little money of its own but a mandate to capture federal Medicaid money, swoops down on provider programs like the social club and continuing day treatment in Schenectady to force their conversion to PROS, which stands for personal recovery oriented services.
The idealists and dreamers are finding full expression in many areas of modern life--like health care, in psychology, how we spend money, in military planning. It's rubbed off in the mistakes they've made, in the false cheerfulness we see in the world around us. People want to buoy each other up when illness strikes a friend, saying things they don't believe, like “you'll get better soon.” They make foolish investments and buy houses without enough collateral to pay for them when the going gets tough. Businessmen, thinking the world has a rosy glow to it, have sunk us in wasteful practices with their easy deals and careless mortgage lending. They refused to face reality.
How do I know? From what I read, it's a matter of ideology. Americans are cheerful people, who think positively, but not often realistically when we have to be. We don't want to think the worst about anybody or anything. We're compulsively optimistic, it's ingrained in us by our culture to look on the bright side of everything. We can't do otherwise than tell sick people they'll get better soon, greet people we don't know with a smile, and try to make others feel better.
That's called positive thinking and where it goes wrong is in the excesses. Read Barbara Ehrenreich's book, “Bright Sided,” about the extravagant way our culture perceives happiness and a better life as an entitlement for all. She claims “the relentless promotion of positive thinking has undermined America.” She writes that in this idealistic age churches preach that you only have to want something to get it because God wants you to prosper. And when she went down with breast cancer recently, she was told she had to battle hard against it in order to join the hallowed body of survivors. A man suffering with prostate cancer was told it was God's will for him to get cancer whether he survived or not. For those not hopeful enough there is plenty of self-blame.
Some of this irrational exuberance naturally has come over to the recovery trends in mental health.
Remission, not recovery
Along the way, the people who promote the recovery movement in psychiatry have found a way to overcome the medical profession's negative thinking about mental patients. That feeling prevailed, according to the movement, as a staple view for some time, labeled the “clinicians illusion.” It was widely held that patients were doing poorly in between visits when they weren't seeing them. Instead, writes Larry Davidson, PhD, a Yale psychologist and lead author of the new website Recovery to Practice, “the evidence suggests that many people recover over time and that when people drop out of treatment,they often are doing better than we might have expected.”
In his Weekly Highlight column recently, Davidson tells how a workgroup of patients, caregivers and clinicians tackled this by introducing the concept of remission of symptoms. The work group decided that a sizable number of patients sustained periods of symptomatic relief and improved functioning, disrupted by episodes of recurrence or relapse. They called these “periods of remission.” Davidson says there is increasing recognition that such improvements are common.
Thus, the “clinician's illusion” has been turned upside down and given way to the concept of remission. If you're in remission you're part way to recovery. Remission means the worst symptoms have gone away and your functioning is better. But it's a long shot from being free of symptoms. There are still people out there with schizophrenia and bipolar who are on the streets and in shelters and in jail and prisons and repeatedly visit emergency rooms. They have periods of remission, too, but they're not moving ahead toward recovery.
Recovery would involve a more demanding and longer term phenomenon in which a person is relatively free of disease and has the ability to function in the community, Davidson writes. He believes that's possible for some people. He cites the Harding study in Vermont years ago as evidence that long- term hospitalized patients can “recover.” But these were older folks and they were moved to serene farm-like villages in the country. Would they have met a different fate in New York City?
I don't see full recovery for people with schizophrenia. I see them "in recovery" or "in remission". Of course, we want them to make it. I remember my friend at a NAMI national meeting years ago confessing that he and his wife felt they gained sensitivity and understanding in bringing up a mentally disabled child. “But I really do wish it was happening to someone else and not me,” he added. (Roy Neville)
Wednesday, July 21, 2010
Recovery in psychiatry--part 1
The new mantra of recovery
So much we read nowadays in psychiatry has to do with the recovery model, moving away from doctors recommending disease treatments to asking patients what they want from treatment and discussing ways to meet those goals. It's turning the field of psychiatry topsy turvy.
Patient advocacy groups have been pushing this for a long time. The recovery focused movement has won the day, points out an article in Psychiatric News last November. The President's Freedom Commission on Mental Health endorsed the recovery approach back in 2003 when it called for a “fundamental transformation of the nation's approach to mental health care.” And there have been a spate of articles, conferences, speeches and webinars since then, some from the highest perches in the land in favor of converting to the new religion of recovery oriented services.
Now SAMHSA, the Substance Abuse and Mental Health Services Administration, has begun issuing guidelines, moving the educational concept of recovery more to specific instructions for psychiatrists to integrate recovery models into their practices. This training is going on now and is causing professionals to rethink entirely how they provide care, right down to what types of questions they need to ask patients.
The idea is to focus less on a remission of symptoms and more on helping patients overcome the effects of mental illness on their lives, the new gurus explain. This includes difficulties they have with employment, housing, and a lack of hope about their future. The new movement has both adherents and critics. It is behind the thrust in NY State to impose PROS (personal recovery oriented services) on existing networks of community outpatient clinics, day treatment and social club programs here and elsewhere.
What do they mean by recovery?
There's a debate about what anybody means by recovery—is it measurable and lasting? What's the evidence for that? Larry Davidson is a PhD psychologist from Yale who writes for a new website called Recovery to Practice. He addresses these problems quite admirably. In a column June 11 he writes how we have held out hope for a 'magic bullet' to make the illness go away and restore everything to normalcy. But instead, “What we have learned over the past couple of decades is that the truth lies somewhere else. Mental illnesses are not necessarily permanent but even the most evidence-based of practices in mental health are limited in their effectiveness.”
He points out that recent studies have shown that “newer psychiatric medicines are not that much better than the older ones and their side effects are still onerous. It remains the case that only 70% of people with a serious mental illness will derive any relief from these medications and the benefits are limited to only one domain of symptoms—primarily the so-called positive symptoms of hallucinations and delusions—having little to no impact on the more disabling aspects of the disease.” And as noted elsewhere, “treatments do not cure schizophrenia or fully ameliorate symptoms and problems for the majority of affected individuals.”
So where does recovery come in? Davidson tells us: “Recovery, as it turns out, has more to do with what the person with the illness does to contain and minimize the intrusions of the illness than with what professionals do to treat it. One thing people with serious mental illnesses can do is to take the medications prescribed for their condition by mental health professionals. But this is only one thing that they can do among many others, and most likely is not the most effective thing they can do, at least for those people for whom the medications are very limited in efficacy.
“Recovery also has to do with all of those other things people can do, and may need to do in addition to taking prescribed medications. Recovery also has to do with how people go about leading their lives in the presence of, or despite, serious mental illness.
Davidson makes a surprising assessment. He writes: “The most robust evidence base for interventions targeting serious mental illnesses are not for the traditional treatments of medication or psychotherapies that were aimed at eliminating the illness. On the contrary, what mattered most “were those interventions that supported people in participating in the community activities of their choice, in occupying normal adult roles, while they continue to have a mental illness.
This suggests to him that “the most effective breakthroughs in practice for people with serious mental illnesses since the introduction of chlorpromazine in the 1950s have not been in the development of new and better medications but in development of assertive community treatment and the related psychiatric rehabilitation practices of supported housing and supported employment. What these advances have taught us,” he says, “ is that it may be less difficult for people to figure out how to live with a mental illness than to be rid of it altogether. While the mental health field has had limited success in treating the illness, many people have themselves found ways to live with it and some to eventually recovery from it fully.”
These are persuasive arguments for the recovery theorists. They leave out some points. They still talk in generalities. We see our adult children doing well for some time and then suddenly, without notice, falling back into the throes of their disease, perhaps hospitalized, losing a job, pulling out of activities they enjoyed. There isn't any easy explanation—is the medicine not working or has his body worn off its effects? We should expect something like this, it happens with other diseases. But it keeps us on edge over a lifetime that true recovery in schizophrenia or major depression doesn't happen. Nobody gets a free bill of health without a lifetime of checkups and staying on the right medicines. And, we think, symptoms are more manageable with the aid of a steady counselor, trusting friend, supportive family and a good place to live. Those seem to be essentials whether you buy into the new recovery models or not. (Roy Neville)
So much we read nowadays in psychiatry has to do with the recovery model, moving away from doctors recommending disease treatments to asking patients what they want from treatment and discussing ways to meet those goals. It's turning the field of psychiatry topsy turvy.
Patient advocacy groups have been pushing this for a long time. The recovery focused movement has won the day, points out an article in Psychiatric News last November. The President's Freedom Commission on Mental Health endorsed the recovery approach back in 2003 when it called for a “fundamental transformation of the nation's approach to mental health care.” And there have been a spate of articles, conferences, speeches and webinars since then, some from the highest perches in the land in favor of converting to the new religion of recovery oriented services.
Now SAMHSA, the Substance Abuse and Mental Health Services Administration, has begun issuing guidelines, moving the educational concept of recovery more to specific instructions for psychiatrists to integrate recovery models into their practices. This training is going on now and is causing professionals to rethink entirely how they provide care, right down to what types of questions they need to ask patients.
The idea is to focus less on a remission of symptoms and more on helping patients overcome the effects of mental illness on their lives, the new gurus explain. This includes difficulties they have with employment, housing, and a lack of hope about their future. The new movement has both adherents and critics. It is behind the thrust in NY State to impose PROS (personal recovery oriented services) on existing networks of community outpatient clinics, day treatment and social club programs here and elsewhere.
What do they mean by recovery?
There's a debate about what anybody means by recovery—is it measurable and lasting? What's the evidence for that? Larry Davidson is a PhD psychologist from Yale who writes for a new website called Recovery to Practice. He addresses these problems quite admirably. In a column June 11 he writes how we have held out hope for a 'magic bullet' to make the illness go away and restore everything to normalcy. But instead, “What we have learned over the past couple of decades is that the truth lies somewhere else. Mental illnesses are not necessarily permanent but even the most evidence-based of practices in mental health are limited in their effectiveness.”
He points out that recent studies have shown that “newer psychiatric medicines are not that much better than the older ones and their side effects are still onerous. It remains the case that only 70% of people with a serious mental illness will derive any relief from these medications and the benefits are limited to only one domain of symptoms—primarily the so-called positive symptoms of hallucinations and delusions—having little to no impact on the more disabling aspects of the disease.” And as noted elsewhere, “treatments do not cure schizophrenia or fully ameliorate symptoms and problems for the majority of affected individuals.”
So where does recovery come in? Davidson tells us: “Recovery, as it turns out, has more to do with what the person with the illness does to contain and minimize the intrusions of the illness than with what professionals do to treat it. One thing people with serious mental illnesses can do is to take the medications prescribed for their condition by mental health professionals. But this is only one thing that they can do among many others, and most likely is not the most effective thing they can do, at least for those people for whom the medications are very limited in efficacy.
“Recovery also has to do with all of those other things people can do, and may need to do in addition to taking prescribed medications. Recovery also has to do with how people go about leading their lives in the presence of, or despite, serious mental illness.
Davidson makes a surprising assessment. He writes: “The most robust evidence base for interventions targeting serious mental illnesses are not for the traditional treatments of medication or psychotherapies that were aimed at eliminating the illness. On the contrary, what mattered most “were those interventions that supported people in participating in the community activities of their choice, in occupying normal adult roles, while they continue to have a mental illness.
This suggests to him that “the most effective breakthroughs in practice for people with serious mental illnesses since the introduction of chlorpromazine in the 1950s have not been in the development of new and better medications but in development of assertive community treatment and the related psychiatric rehabilitation practices of supported housing and supported employment. What these advances have taught us,” he says, “ is that it may be less difficult for people to figure out how to live with a mental illness than to be rid of it altogether. While the mental health field has had limited success in treating the illness, many people have themselves found ways to live with it and some to eventually recovery from it fully.”
These are persuasive arguments for the recovery theorists. They leave out some points. They still talk in generalities. We see our adult children doing well for some time and then suddenly, without notice, falling back into the throes of their disease, perhaps hospitalized, losing a job, pulling out of activities they enjoyed. There isn't any easy explanation—is the medicine not working or has his body worn off its effects? We should expect something like this, it happens with other diseases. But it keeps us on edge over a lifetime that true recovery in schizophrenia or major depression doesn't happen. Nobody gets a free bill of health without a lifetime of checkups and staying on the right medicines. And, we think, symptoms are more manageable with the aid of a steady counselor, trusting friend, supportive family and a good place to live. Those seem to be essentials whether you buy into the new recovery models or not. (Roy Neville)
Sunday, June 6, 2010
Why PROS won‘t help people with schizophrenia
Those left out of the state programs will be the outcasts
PROS is “a comprehensive recovery oriented program for individuals with severe and persistent mental illness,” the NYS Office of Mental Health’s guidelines state. “The goal is to integrate treatment, support and rehabilitation in a manner that facilitates the individual’s recovery.” Yep, the state’s agents claim that people with serious mental illness like schizophrenia are going to recover. If you conceive of recovery as holding your own with a government paid income, government provided housing and government health insurance, plus regular visits to doctors and counselors, and perhaps some friends and family around to help support you, and a pretty strong constitution to begin with, then you’ll see recovery.
They used to say the odds were 50-50 for recovery of any kind from schizophrenia, but they’re better now with better medicine and the awakening of consciousness that people can improve. And there are far more community mental health services available plus some housing for the same kinds of patients who didn’t do well in the old days. This is after more than 50 years of emptying out the state hospitals and 45 years since passage of the Community Mental Health Centers Act under President Kennedy.
PROS is a newcomer, although other counties were pushed into it by the state three or four years ago as demonstrations. It’s now beating at the door of the Ellis Hospital-run programs here--the psychosocial club and continuing day treatment center, which are to be consolidated downtown and made smaller, and the outpatient mental health clinic, which is said to face restructuring. That may hit here by end of summer, when the Ellis clinicians will be ordered to take on broader roles such as providing benefits counseling and drug-addiction counseling. Conversion of local community mental health programs and retraining of staff is going on all over NYS, driven almost entirely by the state’s ability to access 50 percent federal dollars for PROS under a Medicaid waiver known as the Rehabilitation option.
Rehabilitation is synonymous with PROS and that makes it easier to understand. For the first time psychosocial clubs like Ellis’s Collage, vocational support programs, on-site rehabilitation programs like Pie in the Sky Bakery, run by RSS in Albany, and Intensive Psychiatric Rehabilitation Treatment (IPRT) programs like the one we had on Van Vranken Avenue till two years ago will be required to convert to PROS, while continuing day treatment programs have the option of doing so. Ellis claims it can’t afford to keep the CDT running and so is ready to cash in the chips and turn it into a PROS to receive a higher payment rate from the state. The social club is a state-paid Community Support Services program that can’t continue under CSS and so the hospital plans to shorten it into an afternoon program, also part of PROS. That much has been revealed already to parents and consumers of services at local meetings in the past month. Many of those at the clubhouse are infuriated and are rallying to keep it open, even asking Ellis management to cover the modest costs of running it.
There are many problems with the changeover. A main one is that the state isn’t being candid about what happens to those who don’t fit into the new programs. PROS has some tight regulations for attendance and performance of those in its four main service components, known as community rehabilitation, intensive rehabilitation, ongoing rehabilitation and clinic restructuring, the latter an option. You’d think they’d be more imaginative when naming three of these efforts, which seem mostly overlapping. The point is that the state has a responsibility to all the people with serious mental illness, just as PROS wants to deal with, plus those with lesser versions of illness, such as personality disorders and milder forms of anxiety and depression. It’s true some of those folks, particularly if they’re young and otherwise healthy, can be treated successfully and live relatively normal lives going to work and raising a family. We know some people who do well despite their illness.
But there is a large number of people who do indeed have severe illness, as I wrote recently to top members of the state Office of Mental Health. I said I believe they will either drop out voluntarily or be disqualified. The state envoys have expressed a low regard for the day treatment and social club programs that they say haven’t rehabilitated anyone. But I feel it’s the nature of serious mental illness that is behind the lack of their advancement and slowness to recover. That is, illnesses like schizophrenia are very severe for each of these people, over a lifetime, and the odds are that most will not fit into a rigorous rehabilitation model. Some will--and we want to give them a chance to work harder at their own self-improvement.
For the others, they need a secure place to live and interact with others in the community, and that’s what community support services has done for them. And they won’t be rushed or coerced into something more than that. We are glad they are not in a hospital or a nursing home. We are saving a great deal of money through the community mental health systems. These people have lots of physical ailments, some are elderly, many are overweight, some are too sick to show up for appointments regularly. How are they going to fit the PROS model? That’s why I urged the leaders to reconsider the rules they are forcing on us in Schenectady and Albany and all over the state.
The state OMH News even ran an article in July 2009 quoting Commissioner Michael Hogan and pointing out: “People with schizophrenia often do not receive treatment until the disease is already well-established, with recurrent episodes of psychosis resulting in costly multiple hospitalizations and disabilities that can last for decades. People with the illness are over-represented on disability rolls, and among the homeless and imprisoned. Their unemployment rate is more than 70 perecent, and the lifetime suicide rate for people with the disease is over 10 percent. People with schizophrenia occupy approximately 25 percent of the nation’s hosptial beds.”
Now I ask you, how are those folks going to keep their place in the classrooms and counseling sessions that are in store for them? One of the PROS on Long Island has even signed up its clients for two years of job-oriented lessons and planning, with state agents expecting them all to graduate into a job after two years. It’s fanciful.
The article does cite the fact that a number of research projects have signaled that early intervention--combining medical treatment with consumer and family education, and emphasizing a transition to a productive adult life--holds great promise in reducing the disability that is associated with schizophrenia. But that may be limited to some of our more privileged members. And if the programs have no place for the outcasts, those with the most disabling illnesses and behavior, what kind of a public mental health system is the state office running? A lot of people are going to be left out and who takes care of them? And what about all those programs the providers have set up over the years--affirmative businesses and clubhouses and IPRT and enclaves in industry,for example, that have proven successful and now are being dumped by NY State. It hurts to see the state office dismantle the best programs we have in Schenectady and Albany, that have worked well for so many. They arose out of the dreams of their leaders and took years to fully develop.
We’ve learned over a lifetime that as the services close, more of the tragedies and emergencies involving people with mental and behavioral disorders appear. There’s bound to be more homelessness, suicide attempts and emergency room cases, men hanging around downtown and police pickups. With the state breathing on their necks, the counties have pushed the providers of the “softer” programs like day treatment and social clubs to knuckle under and convert to PROS. They are willing to close what they have--good programs and bad, and they’ve simply taken the money. It’s sad to see it happen, both for the providers and the families and consumers who attend the programs. The most vulnerable will get left out. An awful reminder that what services we have can be so easily taken away. (Roy Neville)
PROS is “a comprehensive recovery oriented program for individuals with severe and persistent mental illness,” the NYS Office of Mental Health’s guidelines state. “The goal is to integrate treatment, support and rehabilitation in a manner that facilitates the individual’s recovery.” Yep, the state’s agents claim that people with serious mental illness like schizophrenia are going to recover. If you conceive of recovery as holding your own with a government paid income, government provided housing and government health insurance, plus regular visits to doctors and counselors, and perhaps some friends and family around to help support you, and a pretty strong constitution to begin with, then you’ll see recovery.
They used to say the odds were 50-50 for recovery of any kind from schizophrenia, but they’re better now with better medicine and the awakening of consciousness that people can improve. And there are far more community mental health services available plus some housing for the same kinds of patients who didn’t do well in the old days. This is after more than 50 years of emptying out the state hospitals and 45 years since passage of the Community Mental Health Centers Act under President Kennedy.
PROS is a newcomer, although other counties were pushed into it by the state three or four years ago as demonstrations. It’s now beating at the door of the Ellis Hospital-run programs here--the psychosocial club and continuing day treatment center, which are to be consolidated downtown and made smaller, and the outpatient mental health clinic, which is said to face restructuring. That may hit here by end of summer, when the Ellis clinicians will be ordered to take on broader roles such as providing benefits counseling and drug-addiction counseling. Conversion of local community mental health programs and retraining of staff is going on all over NYS, driven almost entirely by the state’s ability to access 50 percent federal dollars for PROS under a Medicaid waiver known as the Rehabilitation option.
Rehabilitation is synonymous with PROS and that makes it easier to understand. For the first time psychosocial clubs like Ellis’s Collage, vocational support programs, on-site rehabilitation programs like Pie in the Sky Bakery, run by RSS in Albany, and Intensive Psychiatric Rehabilitation Treatment (IPRT) programs like the one we had on Van Vranken Avenue till two years ago will be required to convert to PROS, while continuing day treatment programs have the option of doing so. Ellis claims it can’t afford to keep the CDT running and so is ready to cash in the chips and turn it into a PROS to receive a higher payment rate from the state. The social club is a state-paid Community Support Services program that can’t continue under CSS and so the hospital plans to shorten it into an afternoon program, also part of PROS. That much has been revealed already to parents and consumers of services at local meetings in the past month. Many of those at the clubhouse are infuriated and are rallying to keep it open, even asking Ellis management to cover the modest costs of running it.
There are many problems with the changeover. A main one is that the state isn’t being candid about what happens to those who don’t fit into the new programs. PROS has some tight regulations for attendance and performance of those in its four main service components, known as community rehabilitation, intensive rehabilitation, ongoing rehabilitation and clinic restructuring, the latter an option. You’d think they’d be more imaginative when naming three of these efforts, which seem mostly overlapping. The point is that the state has a responsibility to all the people with serious mental illness, just as PROS wants to deal with, plus those with lesser versions of illness, such as personality disorders and milder forms of anxiety and depression. It’s true some of those folks, particularly if they’re young and otherwise healthy, can be treated successfully and live relatively normal lives going to work and raising a family. We know some people who do well despite their illness.
But there is a large number of people who do indeed have severe illness, as I wrote recently to top members of the state Office of Mental Health. I said I believe they will either drop out voluntarily or be disqualified. The state envoys have expressed a low regard for the day treatment and social club programs that they say haven’t rehabilitated anyone. But I feel it’s the nature of serious mental illness that is behind the lack of their advancement and slowness to recover. That is, illnesses like schizophrenia are very severe for each of these people, over a lifetime, and the odds are that most will not fit into a rigorous rehabilitation model. Some will--and we want to give them a chance to work harder at their own self-improvement.
For the others, they need a secure place to live and interact with others in the community, and that’s what community support services has done for them. And they won’t be rushed or coerced into something more than that. We are glad they are not in a hospital or a nursing home. We are saving a great deal of money through the community mental health systems. These people have lots of physical ailments, some are elderly, many are overweight, some are too sick to show up for appointments regularly. How are they going to fit the PROS model? That’s why I urged the leaders to reconsider the rules they are forcing on us in Schenectady and Albany and all over the state.
The state OMH News even ran an article in July 2009 quoting Commissioner Michael Hogan and pointing out: “People with schizophrenia often do not receive treatment until the disease is already well-established, with recurrent episodes of psychosis resulting in costly multiple hospitalizations and disabilities that can last for decades. People with the illness are over-represented on disability rolls, and among the homeless and imprisoned. Their unemployment rate is more than 70 perecent, and the lifetime suicide rate for people with the disease is over 10 percent. People with schizophrenia occupy approximately 25 percent of the nation’s hosptial beds.”
Now I ask you, how are those folks going to keep their place in the classrooms and counseling sessions that are in store for them? One of the PROS on Long Island has even signed up its clients for two years of job-oriented lessons and planning, with state agents expecting them all to graduate into a job after two years. It’s fanciful.
The article does cite the fact that a number of research projects have signaled that early intervention--combining medical treatment with consumer and family education, and emphasizing a transition to a productive adult life--holds great promise in reducing the disability that is associated with schizophrenia. But that may be limited to some of our more privileged members. And if the programs have no place for the outcasts, those with the most disabling illnesses and behavior, what kind of a public mental health system is the state office running? A lot of people are going to be left out and who takes care of them? And what about all those programs the providers have set up over the years--affirmative businesses and clubhouses and IPRT and enclaves in industry,for example, that have proven successful and now are being dumped by NY State. It hurts to see the state office dismantle the best programs we have in Schenectady and Albany, that have worked well for so many. They arose out of the dreams of their leaders and took years to fully develop.
We’ve learned over a lifetime that as the services close, more of the tragedies and emergencies involving people with mental and behavioral disorders appear. There’s bound to be more homelessness, suicide attempts and emergency room cases, men hanging around downtown and police pickups. With the state breathing on their necks, the counties have pushed the providers of the “softer” programs like day treatment and social clubs to knuckle under and convert to PROS. They are willing to close what they have--good programs and bad, and they’ve simply taken the money. It’s sad to see it happen, both for the providers and the families and consumers who attend the programs. The most vulnerable will get left out. An awful reminder that what services we have can be so easily taken away. (Roy Neville)
Thursday, May 27, 2010
How to survive hip surgery at Ellis and learn to enjoy it
(from the NAMI Schenectady newsletter, May-June 2010)
It's 8:40 am. They've had me in pre-op two hours already, taken my clothes and wallet and glasses and dressed me in a johnny shirt. Abruptly, someone grabs my bed and pushes me roughly into the hall, zigzagging along as I study the ceiling tiles flashing by overhead. They come to a plain door in the hall and it opens and they wheel me into bright lights. What a disappointing little room with a few scattered people flitting by and a few tables for apparatus. Imagine—this is the core of the hospital—the grand operating theatre, where people survive or die at the hands of skilled surgeons while nurses watch the blips of electronic machines and liquids in translucent bags flow silently into the body to keep vital life signs going. Like we see on the hospital shows on TV. The eerie aura of life and death hanging in the balance is in there and it's unsettling unless you put it out of mind and take as comfort that you are in the hands of the best people we have,the best trained, the best team, the latest equipment. I say to myself: Brother, I trust. I feel special in the center of the room. They've whisked me out of my bed onto a narrow bench or table. I could almost fall off of this it's so small. Is that the best they can do? I thought. They whisper hello. I think it's the anesthetist who now greets me. They're assuming positions around me. He clamps a plastic mask over my nose and mouth, lifts it off and says, you'll be out in a few seconds. I'm not out right then, but the mask comes down again and I'm off in dreamland.
Next—it seemed an eternity later--I woke up in post-op, with a head full of cuddly dreams and imaginings of stars and moons. How are you feeling? Someone asked, the same question I would receive umpteen times a day from now on. I felt like I'd been away a long time. They took me by gurney to my room on A-3, post-surgery and somehow slipped me into my bed where I slept for hours. Then hospital life begins: the first night or two they wake you just about every hour to take vital signs--blood pressure, pulse, and temperature (the last is done by machine with a swipe of your forehead—no more thermometer under the tongue. Someone from the hospital lab comes in at 5 or 6 am to wake you and draw your blood, every day. The nurses and student nurses who crowded into my room ask me questions and have to write everything down. They check my dressing. My hip surgery went well—the incision is clean and untroubled with a cross hatching of dark staples down its length, like repair after a shark's bite. The housekeeper even woke me at 6 one morning to introduce herself. The day nurses streamed in and out, 18 or 20 separate visits the first day, inquiring, soothing, wordlessly doing their chores. They push a console with a laptop computer on it and spend awhile pushing the screen to record my vital signs and assess my condition. Out in the hall they're doing more of that, nurses studying their computer screens and punching keys. That's modern nursing.
My bed is wide and comfortable and above my head is a line of switches for them to turn lights on or off. They can elevate or lower my bed's upper half. I have a phone to order my meals and a remote control for the thin-screen high-def tv on the wall. This must be the queen suite in Ellis Hospital, armed to the teeth with modern technology. I'm hooked up to an intravenous line with a fluid bag hanging overhead on a metal tree with an electronic contraption blinking out red or green numbers on its face. Then there's the pump. It's ingenious, a small plastic grip with a button on it in bed alongside your hip which you press whenever you feel pain. Well, every body knows after getting part of you removed you're going to feel pain and so you push that pump pretty darn often. The line from the pump goes up to an overhead bag with liquid dilaudid, an opiate narcotic that Ellis chooses to use as its main pain mollifier, in place of pills and other injections that have been used in the past. Imagine—no pills, just push the pump and feel instant relief. It invites odious comparisons with the appeal for instant gratification that junkies must feel with their drugs on the outside. This is more humane, of course, to comfort us, to let us know our every tremor and ache can nevertheless bring peace of mind. (Oh, to have the drug maker's contract with hospitals that issue this magical drug.)
As the days grow and I begin to feel less pain and more like a human being, they talk of discharging me, first to Sunnyview and then home. But there's a catch—my MVP Gold insurance doesn't cover rehab at Sunnyview for some reason so they cant get me in there even though the head discharge nurse says, we're going to take you down there Saturday morning and roll you through the gates. They were stopped before they started. So Ellis goofed here, they suggested I go home only three days after my surgery and that wouldn't work. Why should someone at home do the rehab and close care that's needed so soon after? Rehab is part of the process of getting better—daily exercise and attention to each step of the way. And you don't dump people back home right away. The compromise,which suited me, was to have a home-duty visiting nurse-physical therapist come to our house several times after I finally left the hospital after the weekend. She put me through my paces and this worked well, thanks to Visiting Nurse Service (bless them for what they do).
Now, it's much later when I write this, three weeks after the big event. I can sit up and type on the computer and answer the phone, even with the last of the aches and pains coming from my rump. Oh, still I long for the pleasures of the Ellis pump, the assurance it gave each of us, the lofty, dreamy feelings it created. I remember I couldn't read the first few days in hospital while taking that stuff. My mind wouldn't concentrate, my eyes wouldn't focus on the page, they ran off to other lines of text. I thought it was me but it was the drug. Anyway, if you're thinking of surgery at Ellis, you'll have the chance to enter dreamland like I did and you'll make it through, thanks to the pump. (Roy Neville, April 30)
It's 8:40 am. They've had me in pre-op two hours already, taken my clothes and wallet and glasses and dressed me in a johnny shirt. Abruptly, someone grabs my bed and pushes me roughly into the hall, zigzagging along as I study the ceiling tiles flashing by overhead. They come to a plain door in the hall and it opens and they wheel me into bright lights. What a disappointing little room with a few scattered people flitting by and a few tables for apparatus. Imagine—this is the core of the hospital—the grand operating theatre, where people survive or die at the hands of skilled surgeons while nurses watch the blips of electronic machines and liquids in translucent bags flow silently into the body to keep vital life signs going. Like we see on the hospital shows on TV. The eerie aura of life and death hanging in the balance is in there and it's unsettling unless you put it out of mind and take as comfort that you are in the hands of the best people we have,the best trained, the best team, the latest equipment. I say to myself: Brother, I trust. I feel special in the center of the room. They've whisked me out of my bed onto a narrow bench or table. I could almost fall off of this it's so small. Is that the best they can do? I thought. They whisper hello. I think it's the anesthetist who now greets me. They're assuming positions around me. He clamps a plastic mask over my nose and mouth, lifts it off and says, you'll be out in a few seconds. I'm not out right then, but the mask comes down again and I'm off in dreamland.
Next—it seemed an eternity later--I woke up in post-op, with a head full of cuddly dreams and imaginings of stars and moons. How are you feeling? Someone asked, the same question I would receive umpteen times a day from now on. I felt like I'd been away a long time. They took me by gurney to my room on A-3, post-surgery and somehow slipped me into my bed where I slept for hours. Then hospital life begins: the first night or two they wake you just about every hour to take vital signs--blood pressure, pulse, and temperature (the last is done by machine with a swipe of your forehead—no more thermometer under the tongue. Someone from the hospital lab comes in at 5 or 6 am to wake you and draw your blood, every day. The nurses and student nurses who crowded into my room ask me questions and have to write everything down. They check my dressing. My hip surgery went well—the incision is clean and untroubled with a cross hatching of dark staples down its length, like repair after a shark's bite. The housekeeper even woke me at 6 one morning to introduce herself. The day nurses streamed in and out, 18 or 20 separate visits the first day, inquiring, soothing, wordlessly doing their chores. They push a console with a laptop computer on it and spend awhile pushing the screen to record my vital signs and assess my condition. Out in the hall they're doing more of that, nurses studying their computer screens and punching keys. That's modern nursing.
My bed is wide and comfortable and above my head is a line of switches for them to turn lights on or off. They can elevate or lower my bed's upper half. I have a phone to order my meals and a remote control for the thin-screen high-def tv on the wall. This must be the queen suite in Ellis Hospital, armed to the teeth with modern technology. I'm hooked up to an intravenous line with a fluid bag hanging overhead on a metal tree with an electronic contraption blinking out red or green numbers on its face. Then there's the pump. It's ingenious, a small plastic grip with a button on it in bed alongside your hip which you press whenever you feel pain. Well, every body knows after getting part of you removed you're going to feel pain and so you push that pump pretty darn often. The line from the pump goes up to an overhead bag with liquid dilaudid, an opiate narcotic that Ellis chooses to use as its main pain mollifier, in place of pills and other injections that have been used in the past. Imagine—no pills, just push the pump and feel instant relief. It invites odious comparisons with the appeal for instant gratification that junkies must feel with their drugs on the outside. This is more humane, of course, to comfort us, to let us know our every tremor and ache can nevertheless bring peace of mind. (Oh, to have the drug maker's contract with hospitals that issue this magical drug.)
As the days grow and I begin to feel less pain and more like a human being, they talk of discharging me, first to Sunnyview and then home. But there's a catch—my MVP Gold insurance doesn't cover rehab at Sunnyview for some reason so they cant get me in there even though the head discharge nurse says, we're going to take you down there Saturday morning and roll you through the gates. They were stopped before they started. So Ellis goofed here, they suggested I go home only three days after my surgery and that wouldn't work. Why should someone at home do the rehab and close care that's needed so soon after? Rehab is part of the process of getting better—daily exercise and attention to each step of the way. And you don't dump people back home right away. The compromise,which suited me, was to have a home-duty visiting nurse-physical therapist come to our house several times after I finally left the hospital after the weekend. She put me through my paces and this worked well, thanks to Visiting Nurse Service (bless them for what they do).
Now, it's much later when I write this, three weeks after the big event. I can sit up and type on the computer and answer the phone, even with the last of the aches and pains coming from my rump. Oh, still I long for the pleasures of the Ellis pump, the assurance it gave each of us, the lofty, dreamy feelings it created. I remember I couldn't read the first few days in hospital while taking that stuff. My mind wouldn't concentrate, my eyes wouldn't focus on the page, they ran off to other lines of text. I thought it was me but it was the drug. Anyway, if you're thinking of surgery at Ellis, you'll have the chance to enter dreamland like I did and you'll make it through, thanks to the pump. (Roy Neville, April 30)
Why hospital care costs so much--the expansion of medical records
It's always been the business of doctors, nurses and health care givers of all kinds in hospitals, nursing homes, doctors offices, clinics and the like to keep close and detailed patient records. Depending on the circumstances these range from a folder your doctor keeps that contain his handwritten notes about your complaints and condition, test results, his analysis or assessment, treatment recommendations and prescriptions ordered. If you're hospitalized you might have a more detailed health history taken, plus data sheets and charts, progress notes of those taking care of you, results of lab tests and the analysis and diagnoses of various practitioners who have had a whack at you. That's my guess. It's simply taken as truth that the doctors and clinics and other health care practitioners who take responsibility for your care will review these records and rely on them when they next evaluate you. And they will plan for your continued care and what role others might play, on the basis of what is written down in your records.
As sensible and eternal as this system has been for everybody serving in an office or clinic or hospital, modern corporate medicine has made big changes in medical record keeping in the last decade. The changeover to electronic records is still going on, with ever more complex and extensive kinds of data gathering and analysis required. This creates an amazing burden on nurses (as well as the Ellis mental health clinicians downtown) who are the primary record keepers. I've recently witnessed the fact that nurses spend more than half of their time on the orthopedic floor at Ellis at their computer workstations in the patient's room and out in the hall. They're not talking to the patient, or observing or doing treatments or giving out medicine, which are the things that nurses do.
They take vital signs (blood pressure, pulse and temperature) at your bedside in seconds, then retreat to their consoles to record everything that the computer program calls for including such inanities, I'm told, as whether the bed rails are up or down. And I suppose, they assess whether you look bright this morning, if you're eating and sleeping and have had a proper bowel movement. And they will do this type reporting over and over, filling in boxes on the computer screen using different codes and shorthand that some computer whiz has designed for them.
It's enough to make nurses turn away from the profession. The student nurses I had at my bedside during my recent recovery from hip surgery at Ellis in April said they spent several hours a day at their computer. One said they had to assess what my condition meant, not just the physical signs. That means using their imagination. It's done so that supervisors can see what they've done, every shift, every day.
Do they want to do this? Not at all. They told me they disliked it, it kept them away from direct patient care and their reason for becoming a nurse. They were asked to put down far more detail than needed. My professional home-care physical therapist said when she went into nursing 27 years ago she did it to be close to patients, to make a difference in their recovery. Now she works on a laptop in my house for part of her time with me and spends more time on it at night—all to satisfy federal rules for her position.
Why do they do it? The nurse said it's required by federal Medicare regulations. That governs Medicaid and private insurance companies as well. The hospital has to do it to be reimbursed. They also do it because the hospital wants to be protected in the event of lawsuits over the treatment someone has received or a medical malpractice claim, for instance. That's why we knuckle under to these outrageous claims on the time and energy of our doctors and nurses.
While electronic records are touted as cost-saving, critics say this is not demonstratedly so. Instead, the price tag to switch over to these systems has cost hospitals and the public millions of dollars. There's an extreme concern in the hospital about sharing and safeguarding the extensive system of electronic records, which adds to cost. They must protect both patient and physician confidentiality under federal and state laws. So the sharing and access is likely missing. The visiting nurse's computer record on me cant be shared with my surgeon, who ordered her care, nor the hospital, both of which have systems incompatible with hers. And time spent at the computer console is certainly a consideration. Nurses can't be assigned more patients than now, just as the Ellis mental health clinicians can't take on more patients, leading to the backlog in appointments the past few years.
While computerized records are all the rage, and have clear benefits for storage and versatility of use over the handwritten ones, hospitals and clinics and doctors offices still must rely on longhand notes for many applications. For one thing, it's simpler to write down what the patient says when face to face. These are the customary progress notes and charting that nurses are trained to do. Why should they recapitulate the record on a computer screen? For whom are the records kept, after all, if not the immediate patient? Instead, the computer records seem destined for data banks that serve the institutional purposes of regulators and insurance companies and research entities. I don't think my hospital records have much value to anyone else, except for somebody's studies and we shouldn't have to pay for that.
By the way, NY State is about to implement a multi-million dollar computer network to store and manage our medical records, called eHealth. It's like a data bank for each of us so doctors and other care providers can access information about us when we need them to. The information would come from hospitals, physicians, pharmacies, clinical labs, health insurers, and the Medicaid program. It can pave the way for safer, more convenient health care,say the people touting eHealth. It will tell others if we've changed doctors, seen a specialist, visited a clinic, or checked into a hospital and much more. I call it invasive and super-expensive, not needed or wanted. The state will receive federal surplus money through ARRA, the Recovery and Reinvestment Act to pay for it. It's also called SHIN-NY and you'll be hearing about it soon, as
hospital costs keep rising, and you wonder why. (Roy Neville)
As sensible and eternal as this system has been for everybody serving in an office or clinic or hospital, modern corporate medicine has made big changes in medical record keeping in the last decade. The changeover to electronic records is still going on, with ever more complex and extensive kinds of data gathering and analysis required. This creates an amazing burden on nurses (as well as the Ellis mental health clinicians downtown) who are the primary record keepers. I've recently witnessed the fact that nurses spend more than half of their time on the orthopedic floor at Ellis at their computer workstations in the patient's room and out in the hall. They're not talking to the patient, or observing or doing treatments or giving out medicine, which are the things that nurses do.
They take vital signs (blood pressure, pulse and temperature) at your bedside in seconds, then retreat to their consoles to record everything that the computer program calls for including such inanities, I'm told, as whether the bed rails are up or down. And I suppose, they assess whether you look bright this morning, if you're eating and sleeping and have had a proper bowel movement. And they will do this type reporting over and over, filling in boxes on the computer screen using different codes and shorthand that some computer whiz has designed for them.
It's enough to make nurses turn away from the profession. The student nurses I had at my bedside during my recent recovery from hip surgery at Ellis in April said they spent several hours a day at their computer. One said they had to assess what my condition meant, not just the physical signs. That means using their imagination. It's done so that supervisors can see what they've done, every shift, every day.
Do they want to do this? Not at all. They told me they disliked it, it kept them away from direct patient care and their reason for becoming a nurse. They were asked to put down far more detail than needed. My professional home-care physical therapist said when she went into nursing 27 years ago she did it to be close to patients, to make a difference in their recovery. Now she works on a laptop in my house for part of her time with me and spends more time on it at night—all to satisfy federal rules for her position.
Why do they do it? The nurse said it's required by federal Medicare regulations. That governs Medicaid and private insurance companies as well. The hospital has to do it to be reimbursed. They also do it because the hospital wants to be protected in the event of lawsuits over the treatment someone has received or a medical malpractice claim, for instance. That's why we knuckle under to these outrageous claims on the time and energy of our doctors and nurses.
While electronic records are touted as cost-saving, critics say this is not demonstratedly so. Instead, the price tag to switch over to these systems has cost hospitals and the public millions of dollars. There's an extreme concern in the hospital about sharing and safeguarding the extensive system of electronic records, which adds to cost. They must protect both patient and physician confidentiality under federal and state laws. So the sharing and access is likely missing. The visiting nurse's computer record on me cant be shared with my surgeon, who ordered her care, nor the hospital, both of which have systems incompatible with hers. And time spent at the computer console is certainly a consideration. Nurses can't be assigned more patients than now, just as the Ellis mental health clinicians can't take on more patients, leading to the backlog in appointments the past few years.
While computerized records are all the rage, and have clear benefits for storage and versatility of use over the handwritten ones, hospitals and clinics and doctors offices still must rely on longhand notes for many applications. For one thing, it's simpler to write down what the patient says when face to face. These are the customary progress notes and charting that nurses are trained to do. Why should they recapitulate the record on a computer screen? For whom are the records kept, after all, if not the immediate patient? Instead, the computer records seem destined for data banks that serve the institutional purposes of regulators and insurance companies and research entities. I don't think my hospital records have much value to anyone else, except for somebody's studies and we shouldn't have to pay for that.
By the way, NY State is about to implement a multi-million dollar computer network to store and manage our medical records, called eHealth. It's like a data bank for each of us so doctors and other care providers can access information about us when we need them to. The information would come from hospitals, physicians, pharmacies, clinical labs, health insurers, and the Medicaid program. It can pave the way for safer, more convenient health care,say the people touting eHealth. It will tell others if we've changed doctors, seen a specialist, visited a clinic, or checked into a hospital and much more. I call it invasive and super-expensive, not needed or wanted. The state will receive federal surplus money through ARRA, the Recovery and Reinvestment Act to pay for it. It's also called SHIN-NY and you'll be hearing about it soon, as
hospital costs keep rising, and you wonder why. (Roy Neville)
Tuesday, February 9, 2010
DSM-V: Part 2--What's a brain disorder?
Should it be what the DSM says it is?
The Diagnostic and Statistical Manual of Mental Disorders (DSM) has been coming out since 1952 and has changed dramatically since then. “Human nature has not metamorphosed but each DSM has included more disorders than the last,” writes Frederick Crews in NY Review of Books (Dec.6, 2007). By the fourth edition in 1994, (which some of us were fed on like mothers' milk), there were over 350 disorders listed, “marked by dubious symptoms such as feeling low, worrying, bearing grudges, and smoking.” Those items were put in checklists so that “in Bingo style, for example, a patient who fits five out of the nine listed criteria for depression is tagged with the disorder.”
Christopher Lane, a literary critic and not a psychiatrist, who follows the Freudian line (and hated that the third edition abolished the neuroses), opposes the attempt in these volumes to categorize disorders according to their “detectable traits”. He writes that the DSM has ended “almost a century of psychoanalytic thought and (is) thus a reversion to Victorian psychiatry.” (I think he means in Victorian England these disorders were thought to be morally corrupting and curable, and so they put people away, which led to the way mentally ill people were treated in our country until the 1960s and '70s.)
What is a mental disorder? Well, here's the way the current manual, the DSM-IV-TR, puts it: “While this is a classification of mental disorders, no definition adequately specifies precise boundaries for the concept of a mental disorder. (They) have been defined by a variety of concepts, e.g., distress, dysfunction, dyscontrol, disadvantage, disability, inflexibility, irrationality, syndrome pattern, etiology and statistical deviation. Each is a useful indicator but none is equivalent to the concept and different situations call for different definitions.
“The DSM-IV uses categories to divide mental disorders into types based on criteria sets with defining features,” it continues. “That's the traditional method of organizing. (But) there is no assumption that each category of a mental disorder is a discrete entity with boundaries dividing it from other mental disorders. There is also no assumption that all individuals having the same disorder are alike in all important ways.”
With this much leeway to go on, no wonder the critics are having a field day. As one writer points out, “the rapid pace of pharmaceutical innovation has resulted in a corresponding need for the discovery of new diseases as well. As long as the drug industry continues to develop new products, the American Psychiatric Association guarantees a steady supply of new diseases requiring treatment.” And these find their way into the DSM. There are “diseases and subcategories, co-morbidities, prodromal forms of combined clinical subtypes, shadow syndromes and the like. ..(also) the catch-all category known as Not Otherwise Specified, or NOS, which is applied whenever the symptoms of any given mental disorder do not meet the criteria of any specific disorder within that category.” (bonkersinstitute.org)
Every new disorder is supposed to meet a host of criteria before being accepted into the manual. But transparency is a big issue and “behind the dispute is the question of whether the vague, open-ended terms being discussed even come close to describing real psychiatric disorders,” writes Lane in the Los Angeles Times. One of the past consultants to the DSM, he says, has revealed that editorial meetings over changes “were often chaotic. There was very little systematic research.” And the main author of the previous volume, Robert Spitzer, said he's against science by committee because of the willy-nilly way that psychiatrists have defined dozens of disorders in the past.
There is suspicion, too, that industry profit motives are bound to influence what goes into the DSM. Lane's book, “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He cites “the manipulations that promoted social anxiety disorder to a national emergency,” created by Madison Avenue and Big Pharma that have led to billions in profits for the companies. An ad for Zoloft in the American Journal of Psychiatry, August 2003, for instance, shows a woman with downcast eyes and asks: Is she just shy? Or does she have social anxiety disorder?
Sadness is another trait that is focused on. In “The Loss of Sadness,” Allan Horwitz and Jerome Wakefield comment on the fact that depression is now declared epidemic around the world by the World Health Organization. “Those judgments rest on failure to distinguish between major depression, indeed devastating to its sufferers, and lesser episodes of sadness, they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost, both medically and culturally, when it is misread as a depressive disorder.”
The book implies that nearly every non-psychiatric complaint is subject to over-diagnosis unless contextual factors—familial, cultural, relational, financial—are weighed in the balance.” The authors beg the compilers of DSM-V to inquire into each patient's circumstances before concluding that they are faced with a bona fide disorder. But as author Crews points out, the DSM's inability to separate “vague discontents from real maladies” serves the profit making purposes of the medical profession and isn't likely to be changed. (Roy Neville)
The Diagnostic and Statistical Manual of Mental Disorders (DSM) has been coming out since 1952 and has changed dramatically since then. “Human nature has not metamorphosed but each DSM has included more disorders than the last,” writes Frederick Crews in NY Review of Books (Dec.6, 2007). By the fourth edition in 1994, (which some of us were fed on like mothers' milk), there were over 350 disorders listed, “marked by dubious symptoms such as feeling low, worrying, bearing grudges, and smoking.” Those items were put in checklists so that “in Bingo style, for example, a patient who fits five out of the nine listed criteria for depression is tagged with the disorder.”
Christopher Lane, a literary critic and not a psychiatrist, who follows the Freudian line (and hated that the third edition abolished the neuroses), opposes the attempt in these volumes to categorize disorders according to their “detectable traits”. He writes that the DSM has ended “almost a century of psychoanalytic thought and (is) thus a reversion to Victorian psychiatry.” (I think he means in Victorian England these disorders were thought to be morally corrupting and curable, and so they put people away, which led to the way mentally ill people were treated in our country until the 1960s and '70s.)
What is a mental disorder? Well, here's the way the current manual, the DSM-IV-TR, puts it: “While this is a classification of mental disorders, no definition adequately specifies precise boundaries for the concept of a mental disorder. (They) have been defined by a variety of concepts, e.g., distress, dysfunction, dyscontrol, disadvantage, disability, inflexibility, irrationality, syndrome pattern, etiology and statistical deviation. Each is a useful indicator but none is equivalent to the concept and different situations call for different definitions.
“The DSM-IV uses categories to divide mental disorders into types based on criteria sets with defining features,” it continues. “That's the traditional method of organizing. (But) there is no assumption that each category of a mental disorder is a discrete entity with boundaries dividing it from other mental disorders. There is also no assumption that all individuals having the same disorder are alike in all important ways.”
With this much leeway to go on, no wonder the critics are having a field day. As one writer points out, “the rapid pace of pharmaceutical innovation has resulted in a corresponding need for the discovery of new diseases as well. As long as the drug industry continues to develop new products, the American Psychiatric Association guarantees a steady supply of new diseases requiring treatment.” And these find their way into the DSM. There are “diseases and subcategories, co-morbidities, prodromal forms of combined clinical subtypes, shadow syndromes and the like. ..(also) the catch-all category known as Not Otherwise Specified, or NOS, which is applied whenever the symptoms of any given mental disorder do not meet the criteria of any specific disorder within that category.” (bonkersinstitute.org)
Every new disorder is supposed to meet a host of criteria before being accepted into the manual. But transparency is a big issue and “behind the dispute is the question of whether the vague, open-ended terms being discussed even come close to describing real psychiatric disorders,” writes Lane in the Los Angeles Times. One of the past consultants to the DSM, he says, has revealed that editorial meetings over changes “were often chaotic. There was very little systematic research.” And the main author of the previous volume, Robert Spitzer, said he's against science by committee because of the willy-nilly way that psychiatrists have defined dozens of disorders in the past.
There is suspicion, too, that industry profit motives are bound to influence what goes into the DSM. Lane's book, “Shyness,” exposes efforts of the big drug companies to have shy people view themselves as mentally ill. He cites “the manipulations that promoted social anxiety disorder to a national emergency,” created by Madison Avenue and Big Pharma that have led to billions in profits for the companies. An ad for Zoloft in the American Journal of Psychiatry, August 2003, for instance, shows a woman with downcast eyes and asks: Is she just shy? Or does she have social anxiety disorder?
Sadness is another trait that is focused on. In “The Loss of Sadness,” Allan Horwitz and Jerome Wakefield comment on the fact that depression is now declared epidemic around the world by the World Health Organization. “Those judgments rest on failure to distinguish between major depression, indeed devastating to its sufferers, and lesser episodes of sadness, they argue. “Episodic sadness has always been a socially approved means of adjusting to misfortune and much is lost, both medically and culturally, when it is misread as a depressive disorder.”
The book implies that nearly every non-psychiatric complaint is subject to over-diagnosis unless contextual factors—familial, cultural, relational, financial—are weighed in the balance.” The authors beg the compilers of DSM-V to inquire into each patient's circumstances before concluding that they are faced with a bona fide disorder. But as author Crews points out, the DSM's inability to separate “vague discontents from real maladies” serves the profit making purposes of the medical profession and isn't likely to be changed. (Roy Neville)
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