Time To Change

The stigma about Schizophrenia is huge. Popular media exploits the topic for ratings, not necessarily to better inform the public. Often the results more misinform rather than educate.

A different kind of stigma has a problem within the mental health industry. Up until a couple of decades ago, new practitioners were trained to believe that people with schizophrenia get worse with age, and have no hope for recovery.

Contrary to conventional wisdom, the change paradigm was not the result of new medications. Those meds have been around for 50 years. Recent research has shown that more recent second generation medications have not improved treatment much more than producing fewer side effects. Certainly, medications have done wonders in the treatment of the active symptoms, sometimes called "positive symptoms" of schizophrenia. Hallucinations, delusions, and the disorganized thinking and behaving is effectively treated for many.But the negative symptoms appear to be largely unaffected my the medications themselves.

The real change began with consumers of mental health services become their own advocates and providing peer support. The sufferers themselves discovered that their self-esteem, sense of control, and have become more assertive with mental health providers.

I think that persons with schizophrenia often also suffer from a situational kind of depression. They feel estranged from others, feel helpless to affect their own lives, and hopeless about improvement. This is not surprising given others often avoid relationships with persons with schizophrenia, even mental health providers tend to dismiss much of what they say as "delusional". And until recently, their providers have discouraged any thoughts about improvement or a "normal" life. Applying the principle of recovery leads to significant improvement in these so-called "negative symptoms".

The result was a paradigm change in mental health treatment. Clearly, recovery has been with us for a long time, but you couldn't find it in text books or graduate level courses until a few years ago. The Recovery Movement has revolutionized our knowledge about the long term effects of treatment for schizophrenia.

There is still a long way to go. My colleagues often express a reluctance to counsel people with schizophrenia because of the limited prospects for improvement. I think instead the problem is these therapists have a limited understanding of how to counsel persons with schizophrenia. Progress is indeed possible, but the focus of treatment requires specialized knowledge about psychotherapy with persons with schizophrenia. There is little literature in publication that addresses this topic. However, Silvano Arieti, in his book Interpretations of Schizophrenia, wrote about his approach to psychotherapy with institutionalized persons in the 1950s before the introduction of Thorazine, the first effective medication. See my article for more detail on the topic.

This organization, Time to Change, has published two new short movies, suitable for public service announcements about stigma. Thanks to Dr Deb Serani for the link.

The sad thing about Cho, is that his problem was well beyond the ability of the school and mental health system had with which to cope. Even though Cho appeared to have been pretty well served by the high school in their special ed program, there were deeper seated problems than just an anxiety disorder.

Could a similar support program in college headed off the massacre? Possibly. But it also may not have. He was destined to have a melt down at some point. The only question was how much collateral damage there would be.

washingtonpost.com

"Fairfax County school officials determined that Seung Hui Cho suffered from an anxiety disorder so severe that they put him in special education and devised a plan to help, according to sources familiar with his history, but Virginia Tech was never told of the problem.

The disorder made Cho unable to speak in social settings and was deemed an emotional disability, the sources said. When he stopped getting the help that Fairfax was providing, Cho became even more isolated and suffered severe ridicule during his four years at Virginia Tech, experts suggested. In his senior year, Cho killed 32 students and faculty members and himself in the deadliest shooting by an individual in U.S. history. MORE"

[Updated] Ideas about treating schizophrenia seem to be gradually coming full circle. What began as little more than blaming, shaming and confining, evolved over hundreds years into a state policy of institutional care with "humane treatment". Over the next hundred years treatment has evolved into primarily a highly professionalized medication regime with an inconsistently available community based supports.

Now there is evidence that early intervention in the course of schizophrenia with psychotherapy, medication, and consistently applied community based supports may sometimes prevent the usual long-term permanent disability. Medication alone is not sufficient treatment. What has always been assumed as a manifestation of the illness, may in fact be a by-product of a paternalistic and de-humanizing treatment by the community and service agencies as well as isolation due to the pervasive experience of stigma and discrimination by the individual.

In this article, I will review some of the relevant history of treating schizophrenia, and reveal the uncanny convergence of new seemingly unrelated research that could shift the paradigm in the treatment of schizophrenia. This article is an expression of my opinion, not peer reviewed literature. In fact, I invite my peers to comment tell me where I'm wrong or help me develop the ideas presented herein.

Mental Nurse posted a wake up call for caregivers today. Please note she writes with tongue firmly inserted in cheek.

Service users are time-wasters. They want to be in hospital, are happy to be dependent on professional carers and are ready, willing and eager to become institutionalised as soon as they fall into our grasping hands.

Sound familiar to anyone out there?

…probably not, but now replace the general with the specific, and I wonder how many staff have either heard these words uttered from the mouths of colleagues…or even, dare I say it, have said it themselves:

“Patient x shouldn’t be here, s/he’s just wasting our time…..not mad, but bad. S/he really likes being in hospital/getting a community service, and (the final convincer for anyone who thinks this is just prejudiced opinion……..) we need to discharge him/her before they get institutionalised/too dependent on us.”

The last comment of course refers to the mystical processes of institutionalisation and dependence that have nothing to do with the behaviour of the professionals who are supposed to care for them. I’ve heard these comments all my nursing career, and have always thought...[GEEZ!]. How bad do their lives’ have to be that they would want to live in a mental health unit or have the likes of you visiting them at home?”

I'm afraid both caregivers and consumers have witnessed this phenomena. It's called countertransference.

Freud introduced the term countertransference a few years before he wrote the bulk of his papers on technique, although he never devoted a special study to it. It was considered roughly as the obverse of transference, the repetition of the analyst's irrational, previously acquired attitudes, now directed toward the patient, and was assumed to be absent except in situations in which the therapist was inadequately analyzed. Freud deemed it to be the obligation of the analyst to eliminate such unconscious reactions as obstacles to treatment.

Caregivers, being human beings, get frustrated and overwhelmed and tempted to blame others for their feelings. Unfortunately, despite all the admonitions about "unprofessional behavior" in graduate school, in my experience, it's a topic that comes up in the professional setting less often than it should.

As students, at least some professionals are humbled by the experience of intensive supervision. Topics such as the students' mood, recent stressors, feelings about their clients, as well as tone and choice of words come up as a routine part of supervision. I had that experience and am forever grateful, as are, I'm sure, my clients.

After graduating and becoming licensed, I thought everyone experienced this level of supervision. How wrong I was. It was a baptism of fire when I discovered as a budding supervisor, few professionals are prepared to tolerate that level of feedback. That is not suprising if one considers that so many never experienced it before. Instead of seeing it as another opinion in the context of doing one's best to provide quality service, too many react as if their competence has been challenged.

Indeed, the license says we are competent to provide independent professional practice, and many professionals think that means they don't need supervision or personalized feedback. Most readily accept they must seek consultation with their peers on a regular basis.

I'm sure there are settings where co-workers are more trusting and supportive and such topics do come up. Perhaps I'm coming to this discussion from an unusual point of view and I've worked in relatively hostile work environments. But I don't think so. I don't know many friends who would dare to offer the feedback we all need from time to time. Hopefully, most of us have someone in our lives who will tell us when we've crossed the line, because we all do.

I believe part of what it takes to provide quality service requires one to seek out intensive consultation. Without that regular personal check up, the intuitions we gain from our emotional responses to our clients can quickly impose themselves on the treatment process, as Mental Nurse effectively reminds us.

Prior to about 1960, mental ill individuals were warehoused in state funded hospitals which provided structure and asylum for people who created at least a nuisance for the community and a hardship for families and others feared. Periodic expose's about the deplorable conditions in these settings and the development of modern psychotropic medications lead to realistic alternatives in the community. Deinstitutionalization like all great policy ideas, began as a noble mission, and gradually was distorted into a means to save tax dollars.

The Joint Commission on Mental Illness and Health in 1955 made several recommendations published in 1961. Several key laws followed. In 1963, Aid to the Disabled and the Community Mental Health Act provided community based treatment and support pensions for disabled created the means to pay for community based living for those who couldn't work and had no history of work to make them eligible for Social Security. Then California reformed commitment laws in 1968, beginning a trend towards indefinite confinement, especially when states discovered that they could save millions of dollars moving thousands of persons with mental illness to the community. Two thirds of those released returned home to their families. A third ended up in "board and care homes" provided by local entrepreneurs.

Many people with mental illness are too ill or under socialized to survive with disability payments and board and care. Episodes of illness create gaps in treatment when it's needed most. Without the ability to work, see little value in their lives, and often victims of discrimination and crime, many persons with mental illness drift.

Drifter is a word that strikes a chord in all those who have contact with the chronically mentally ill--mental health professionals, families, and the patients themselves. It is especially important to examine the phenomenon of drifting in the homeless mentally ill. The tendency is probably more pronounced in the young (aged 18 to 35), though it is by no means uncommon in the older age groups. Some drifters wander from community to community seeking a geographic solution to their problems; hoping to leave their problems behind, they find they have simply brought them to a new location. Others, who drift in the same community from one living situation to another, can best be described as drifting through life: they lead lives without goals, direction, or ties other than perhaps an intermittent hostile-dependent relationship with relatives or other caretakers.

Why do the chronically mentally ill drift? Apart from their desire to outrun their problems, their symptoms and their failures, many have great difficulty achieving closeness and intimacy. A fantasy of finding closeness elsewhere encourages them to move on. Yet all too often, if they do stumble into an intimate relationship or find themselves in a residence where there is caring and closeness and sharing, the increased anxiety they experience creates a need to run.

They drift also in search of autonomy, as a way of denying their dependency, and out of a desire for an isolated life-style. Lack of money often makes them unwelcome, and they may be evicted by family and friends. And they drift because of a reluctance to become involved in a mental health treatment program or a supportive out-of-home environment, such as a halfway house or board-and-care home, that would give them a mental patient identity and make them part of a mental health system: they do not want to see themselves as ill.

Those who move out of board-and-care homes tend to be young; they may be trying to escape the pull of dependency and may not be ready to come to terms with living in a sheltered, segregated, low-pressure environment (Lamb 1980a). If they still have goals, they may find life there extremely depressing. Or they may want more freedom to drink or to use street drugs. Those who move on are more apt to have been hospitalized during the preceding year. Some may regard leaving their comparatively static milieu as a necessary part of the process of realizing their goals--but a process that exacts its price in terms of homelessness, crises, decompensation, and hospitalizations. Once out on their own, they will more than likely stop taking their medications and after a while lose touch with Social Security and no longer be able to receive their SSI checks. They may now be too disorganized to extricate themselves from living on the streets--except by exhibiting blatantly bizarre or disruptive behavior that leads to their being taken to a hospital or to jail.

Somewhat less than 55,000 Americans now periodically receive treatment in psychiatric hospitals, this number has been dropping for many years, despite the fact that in urban areas, finding a hospital bed for an acute mentally ill person is often impossible. So not surprisingly, chronically deprived act out their anger and end up in prison. Almost 500,000 mentally ill men and women are serving time in U.S. jails and prisons. Prisons have become the New Asylums in America.

Frontline on PBS website has a 60 minute specially available in streaming video about the problem. Here is an excerpt from the introduction.

In "The New Asylums," FRONTLINE goes deep inside Ohio's state prison system to explore the complex and growing issue of mentally ill prisoners. With unprecedented access to prison therapy sessions, mental health treatment meetings, crisis wards, and prison disciplinary tribunals, the film provides a poignant and disturbing portrait of the new reality for the mentally ill. "It was surprising to see how much treatment was going on inside Ohio's prisons," say FRONTLINE producers Miri Navasky and Karen O'Connor. "And while the prison system is doing a commendable job, you are still left with the feeling that prison is not the answer to this very large social problem."

As the rising number of mentally ill inmates shows no sign of abating, those working inside the nation's prisons are struggling with a system designed for security, not treatment. Corrections officers now have the responsibility of not only securing inmates, but also working with mental health staff to identify and manage disturbed prisoners.

"Providing effective psychiatric care in a maximum security prison is extraordinarily difficult," says prison psychiatrist Gary Beven. "If you have untreated manic depression or bipolar disorder, untreated schizophrenia, somebody might be hallucinating and extremely paranoid. If you don't identify the fact that [a] person has schizophrenia, if you don't provide them with the proper medication, if you don't place them in an environment that allows them to function at an adequate level, then it's just a matter of time, perhaps, [that] something aggressive might occur."

And because these inmates have difficulty following prison rules, a disproportionate number are placed in solitary confinement. "People who are just so unsocialized and so psychologically fragile to begin with are deprived of any kind of social support, any kind of psychological stimulus. And they just fall apart," says Fred Cohen, a prison litigation specialist. Inmate Carl McEachron, sent to prison for stealing a bicycle in 1988, has spent much of his time in prison in isolation, unable to cope with the strict prison environment and racking up an extensive list of violations. His mental illness was left undiagnosed and untreated until recently. "He was the type of individual who was very difficult to work with," says Beven. "[He's] been very aggressive towards staff, including, I believe, by spitting on staff members and throwing body waste. And so there wasn't a lot of empathy for him. ... The tendency would be for somebody like that to just [say], 'Let's lock him away … let's just not have anything to do with him.'"

"Being placed in a solitary situation is like being placed in a prison's prison," McEachron tells FRONTLINE. "And that's worse than simply being taken from society and placed in prison."

Eventually, a majority of mentally ill inmates are released back into the community, generally with a limited amount of medication, little preparation, and sometimes no family or support structure. "We release people with two weeks' worth of medication. Yet it appears that it's taking three months for people to actually get an appointment in the community to continue their services … and if they don't have the energy and/or the insight to do that, they're going to fall through the cracks and end up back in some kind of criminal activity," warns Debbie Nixon-Hughes, chief of the mental health bureau of the Ohio Department of Corrections.

More information on Deinstitutionalization and other government policies effecting mental health.