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stastny.jpgPeter Stastny,* MD, writes about an upcoming conference (Nov 23): "Alternative responses to first psychotic breaks: Rethinking psychiatric crisis."

After several years, there is a renewed focus on treatment for first psychotic episodes. An emphasis on early intervention and prevention of psychosis, with the goal of shortening the "duration of untreated psychosis" has obscured the view on the actual services that are being offered to individuals in the midst of a first episode. Recently, the National Institute of Mental Health challenged the psychiatric field to develop a new, state-of-the-art intervention for an "initial schizophrenic episode" (RAISE), realizing that the outcome of conventional treatment leaves a lot to be desired.

Counter to common belief, a first psychotic episode may actually not have disastrous consequences. It may not herald a course characterized by multiple relapses, re-hospitalizations and a decline in functioning, social and economic standing, relationships and general well-being. Instead, a first breakdown may constitute an opportunity for early recovery and result in a positive realignment of psychological and social constellations, provided that interventions are tailored to the actual needs of the individual, respond to a crisis that has frequently taken hold of the person's entire social support system, and ensure that no additional harm is inflicted at a time when a person is already quite vulnerable.

Interventions that fit this bill have been around for many years. Even going back to the days of moral treatment in the 19th century, one can find many instances of early recovery when people responded to the kind guidance and structure available in the best asylums. Scandinavian psychiatrists have long been at work to optimize interventions for first psychotic episodes, integrating family treatment, individual psychotherapy, optimal and targeted use of medication into a flexible package they termed "need-adapted treatment." Several studies using variations of this approach have shown dramatically positive results, with little use of inpatient services, and much lower medication dosages than usual.

In this country, the Soteria study conducted by Loren Mosher and Alma Menn showed short-term benefits equal to acute hospitalization with significantly less use of antipsychotic medication, benefits that were sustained for at least two years. Countries that have managed to significantly reduce their reliance on inpatient services, such as the UK, Scandinavia and Italy, have been more open to embrace community-based innovations that are flexible, continuous, and supportive of individual resilience and social ties. But mental health consumers in the United States have benefited the least from such promising programs, due to the persistence of hospital-based services, a lack of suitable funding mechanisms, and little awareness about the safety and successes of these interventions.

The voices of consumers and family members who have been through such experiences need to be heard as we are searching for better solutions. In fact, many former patients have become supporters of their peers in going through crises, and have developed approaches that are particularly responsive to the individuals' needs. Trauma-informed interventions have been championed by consumer/survivors and mental health professionals alike, subscribing to the view that psychosis is often a consequence of traumatization, and that additional trauma is often associated with being thrust for the fist time into the conventional services that are generally available. Family members too have often expressed their disappointment with the way their loved ones had been treated at the onset, naturally most often in hindsight, when it might already be too late to turn things around.

Rather than wait for the results of the RAISE project, which are not likely to become available for several years, the time is now to look at some of the tried and true, but non-traditional options. Questions such as when, how and how much medication is best applied; whether hospitalization is always necessary, or can frequently and safely be replaced by homelike residential settings, or even by services provided in the persons home, thus preserving the integrity of the family and the support system. Is the danger of psychosis to the person experiencing it and the social environment exaggerated in the service of minimizing risk and liability for the helping professions? Can we find viable ways of engaging the suffering person's own agency - her own reflective powers - as part of passage through the crisis?

These questions and more will be addressed at a one-day conference on November 23, 2009, at the NYU Kimmel Center, co-sponsored by the International Network towards Alternatives and Recovery, (INTAR) and the Center to Study Recovery in Social Contexts. INTAR is a knowledge- and learning-community composed of advocates and practitioners from around the world who espouse alternative ways of supporting individuals in serious mental health crisis. The Center is a participatory research program dedicated to exploring the meaning and determinants of social recovery for persons diagnosed with severe mental illness. The conference will feature 25 speakers and workshop leaders who have spearheaded innovative projects to intervene in first break situations and other major crises.

Information about speakers, registration and the program are available at (INTAR) and Center to Study Recovery in Social Contexts.

*Peter Stastny is a psychiatrist who has been involved in numerous aspects of community psychiatry for nearly 30 years. He was on the faculty Albert Einstein College of Medicine and is co-author (with Darby Penney) of The Lives they Left Behind - Suitcases from a State Hospital Attic.

Comments (7)
Marian:

Peter Stastny here makes it sound like living in Scandinavia almost is a guarantee for more humane and recovery-oriented care to be provided when a person goes through a "psychotic" crisis. Nothing could be more wrong. "Need adapted treatment", also called the "Vestlapland's model", is, as the name suggests, restricted to a region in Finland, namely Vestlapland. There have been other recovery-oriented treatment approaches that were inspired by the Vestlapland's model, respectively by Soteria and similar projects. For instance the Swedish Parachute Project. All of them have been geographically restricted to more or less minor areas, and many of them are not employed anymore today.

It is true, that community care widely has replaced especially long-term hospitalizations. However, a closer look at how this community care does - NOT - work, shows that it is in fact nothing but what you might call "hospitalization in the community", or, more precisely, on the margins of community. Today, the biological model and thus the almost exclusive reliance on psychotropic drugs as "treatment" dominates psychiatric "care" in Denmark and Norway entirely. In hospital as well as in the community. People aren't warehoused behind the brick walls of a locked ward. They are chemically restrained warehoused in halfway houses respectively in an assisted living facility - more often than not of poor quality; there have been numerous scandals about gross overmedication as well as intolerably filthy and run-down environments here in Denmark over the past years - or, if they're lucky, in their own apartment and at the nearest drop-in center.

About 90 per cent of those who enter the system and receive a "psychosis" or "schizophrenia" label end up as revolving door patients, and on disability.

De-institutionalization has widely failed in Denmark, because it was (mis-)used in order to save the state money, not in order to provide more recovery-oriented services to people in crisis. In the meantime, the overall failure of community mental health care has Danish politicians ask for the re-establishment of hospital beds on locked and secured wards, for the implementation of AOT-laws, as well as for several other initiatives, such as the re-establishment of seclusion rooms, that inevitably will bomb mental health services in this country back to the good old asylum-days. It doesn't occur to anyone that it may not be the form - community instead of hospital - but the contents - recovery-oriented services instead of drugs, drugs, and even more drugs - that is the problem.

The situation in Norway, Sweden, and as far as I am informed also in Iceland is that AOT-laws already do exist, and are excessively used, and that at least the mh system in Norway has hospitalization facilities at its disposal so as to be able to incarcerate a vast number of people long-term. Norway also is the European country with most incidents of involuntary hospitalization and "treatment", as far as I know, Denmark holds a sad third or fourth position on this list.

By and large, also the psychiatric establishment in Scandinavia has been successful defending a purely biological, and in addition widely on coercion based, "treatment" model, and preventing alternatives from as much as being publicly discussed, or even become known to a broader public. IMHO, our system is anything but a model system. And it looks like it will be even less so in the future.

Marian B. Goldstein, Denmark

Posted by Marian | October 17, 2009 5:00 AM
Rossa Forbes:

The outcome of conventional treatment does leave a lot to be desired, but let's understand why, before we go building another model that is doomed to failure. Most consumers don't like the medications they are often coerced to take. However, there are few to no places you can go (even in Europe) where you can be offered empathy, psychotherapy, time away from your overstressed family, without drugs. Recently, my 25 year old son was going through what I call a crisis on his road to recovery. We kept him at home for six months in order to AVOID having him go back into a hospital precisely because he would be put back on medication. There were no other options available to us. If honest information about the different options were made available to consumers at a first psychotic break - options like treating your crisis without drugs - I have no doubt that many more people would opt for no medications. This, of course, has political bearings on the way psychiatric help is currently delivered in most countries. Until the full picture is made available to consumers from the beginning, most solutions are doomed to failure. I also fully agree with Marian's comments that recovery is possible at any time: This message to be vigorously put forward. Recovery is more likely if the person with the label were actually consulted (meaning respected) about his or her treatment options: Withholding information that many others have successfully used to no longer be patients would be dishonest and lead to relapse.

Posted by Rossa Forbes | October 18, 2009 5:08 AM
Marian:

Rossa: Your comment refers to the second point of my critique of Peter Stastny's article, that I only have written about at my own blog, not here:

The other disagreement I have concerning Peter Stastny's article is that also he, as most professionals, seems to believe that when people first had their second, third, or umpteenth "psychotic break" they're beyond redemption. Why his article entirely focusses on alternative treatment options for first "psychotic episodes". I can't tell you exactly how many times I had a "psychotic break" before I eventually received the guidance that made it possible for me to, I dare say once and for all, resolve crisis, but this last of my crises certainly wasn't my first one.

I have no doubt that crisis is "addictive", and habit-forming. The longer and more often someone employs a certain pattern of behavior, certain coping strategies, the more ingrained, probably also neurologically, it becomes. On the other hand, my compared to a teen or twenty-tear-old relatively more extensive life experience also was a huge advantage to me throughout the process of working things out. I'd say, all in all, my chances to recover were maybe different in kind but no smaller than any "first psychotic break" individual's.

No one should ever be regarded "beyond redemption". Recovery is possible and should be aimed at, no matter how many "psychotic breaks" someone has experienced. The services Peter Stastny, and others, are so eager to make available to people who experience their first crisis ought to be available to everyone, disregarded whether they're going through their first, second, or umpteenth crisis.

What I'd like to add here is that I have the deepest respect for Peter Stastny's work, and that my critique should be seen in the light of the fact that I a) more often than not have encountered a view of the mh system in Europe as oh so much better than in the U.S., which it definitely is not, and b) in general see an almost exclusive focus on young people who experience their first "psychotic break". Even Soteria was only accessible for this specific group of people. As mentioned above: although I'd never been in the system before, and thus was not on any kind of drugs - and I realize that being on psych drugs probably complicates the situation, making some kind of detox necessary -, it wasn't my first "break", and I was 43 years old. Both characteristics that would have disqualified me for something like Soteria: "Sorry, bad luck, all we can offer you is a bed on the back ward and a little something to numb you out"? When we fight for alternatives, why not fight for them for everybody to be accessed? Is the difference between the first and the following crises really that huge? It didn't feel that way to me.

Posted by Marian | October 18, 2009 8:59 PM
Silvis Rivers:

Marian's points of view are refreshing if depressing . I am afraid community care often means little "Patient Choice" in the UK - that much heralded patient tool and driver for consumer led innovation that does not apply hardly at all in mental health .

In the UK the DOH has a total stranglehold over mental health supply side services followed closely by the very obedient mental health charities (with their well connected ex DOH executives and heads ) preaching all sorts of mental health PC orthodoxy on grand scales while new mental health reform conceals hopelessness quietly in the community caves .....

We have re-mystified mental health into making people own their own "zero-ness" of a lack of seriously authentic human support and relevant therapy apart from tighten the nuts cogbotics. Welcome to Nothing-land and Aloneness-owness the new existential places that the UK MHNHS does so well - apart from its selectively included Users ...

I am a User and some of us are out here gaining back our own de-mystifiying language that spells out what's missing .

"Patient Choice" and being in charge of it, post crisis .

Posted by Silvis Rivers | October 19, 2009 7:12 AM
Peter Stastny:

Marian:
Your points about the situation in Europe not being all that rosy are well taken. Nevertheless, the experiences in Finland and Sweden (unlike Norway and Denmark) do have important things to teach us: namely, that a considerable proportion of people experiencing a first episode of psychosis (or other altered state of mind) should never be given neuroleptic medication, and that all people who go through such crises should have the opportunity to recover without medication, if at all possible. This evidence-base is poorly known in the US, and the vilification of the Soteria model, in spite of several convincing meta-analyses, has led to the conviction among American psychiatrists, that it is unethical to withhold neuroleptics from anyone with psychotic symptoms, and that these drugs should be given as early as possible, rather than the opposite.
My reason of focusing on first episodes in this article (and in the conference we are staging in New York on 11/23/09; see www.intar.org), has to do with prevention of long-term harm, rather than suggesting that alternatives don't work for any further crisis situation. Of course alternatives are needed throughout the life-span of anyone at risk of undue psychiatric intervention, but there is a window of opportunity in those early episodes that is routinely shut down by mainstream treatment. I know that people who have experienced many years of harmful interventions find it hard to rally behind the focus on first breaks. But the fact that hundreds of people are turned into mental patients for the first time on a daily basis should cause us all to pause and take stock. It would not be hard to avoid the vast majority of first hospitalizations. Wouldn't that be a cause worth rallying behind?

Posted by Peter Stastny | October 24, 2009 5:33 PM
Marian:

Peter Stastny: We do actually have some of the same problems in Scandinavia. In contrast to Soteria, or other alternatives like Diabasis, etc., the Vestlapland's model is quite well-known here, both among professionals and c/s/x. Biopsychiatry's most employed "argument" is that alternatives prioritizing psycho-social over medical help would "cost lives", among "the mentally ill" themselves as well as among the potential victims of their unmedicated acting out. They're playing the suicide- and pickaxe killer-card here as they do it in the U.S. Also, it is usually emphasized that "psychosis" would be harmful, damaging to the "psychotic" individual's brain and personality, and therefor needs to be interrupted by all means, and as early as possible in the course. Whenever that's not sufficient, they resort to the "argument", that an approach like the Vestlapland's model would not be implementable in more densely populated areas than Vestlapland. Unfortunately, the widespread ignorance concerning for instance Soteria - San Francisco certainly not being a deserted wasteland - then often renders the opposition silent.

I do recognize that there are certain problems involved when it comes to people who have been in conventional treatment previous to entering an alternative. The drugs are very difficult to withdraw from, often people are more or less "colonized", and probably difficult to motivate, there's the problem of learned helplessness, as well as the physical and brain damage you mention.

Nevertheless, I don't think it's quite fair to restrict access to alternatives with criteria as "young" and "first episode". There are those, who never went voluntarily along with "treatment as usual", who therefor dropped out of it again and again, as soon as they got the chance, and who thus aren't yet damaged by long-term use of drugs. And there are people like me, who managed to fly under the system's radar, so to speak, who were never hospitalized or put on drugs, before they make their first contact with the system, because they can no longer do on their own anymore. While these people are neither "young" anymore nor experiencing their very first "episode", the "window of opportunity" is far from shut down, I'd say.

I was as motivated as could be to work out whatever the problem, I was determined as could be to never as much as touch a neuroleptic, and I was as positive as could be that, if my decision hadn't been respected, I'd offed myself.

I was, incredibly, lucky. I could afford to pay for a kind of "alternative" help, and my decision was respected. That's why I'm here today, not in any way damaged, and thus able to speak out. So, I wonder, provided there were alternatives available, if it would have been all right to turn away someone like me, and refer me to mainstream "treatment", just because of my age and the fact, that I would have had to say "no", asked if I was experiencing my first "episode". If we need restrictive criteria - and, yes, I agree, one has to start somewhere -, why not start with everybody who isn't yet damaged by long-term use of neuroleptics, disregarded their age and the number of "episodes" they've experienced? Neither not being "young" anymore nor having had previous "episodes" necessarily equals to being addicted to psych drugs, "colonized", helpless and/or not motivated. - Actually my therapist said, I'd made an astoundingly rapid recovery. But well, she isn't used to work with people, who aren't more or less drugged up over their eyeballs...

Posted by Marian | October 29, 2009 6:12 AM
Rebecca:

As a mother of a son who had his "first break" at 18, it is consoling to read that our experience with the mental health system was not unique. I am grateful that professionals are at least discussing alternatives to the present response by the system because the bottom line is right now what is being done isn't working. I also appreciate the desire to wanting to listen to what the family and patient (I refuse to use the term 'consumer' - what are they supposed to consume? drugs?)has to say about the situation. The families need to keep speaking up for our loved ones. I'm not anti-drug per se, but the isolation of that as "treatment" is ludicrous and wrong. During my son's last pointless 3 day hospitalization, he spoke with the psychiatrist exactly once. The doctor finally returned my calls the day my son was released. I've said it before, if this was any other illness, this would not be tolerated. To me, it's like someone having a heart attack and being defibrillated and then told that since that worked all he needed to do was carry a defibrillator around for the rest of his life. What difference does it make why you had a heart attack since we have a "treatment"?
In honor of my son's birthday, I wrote an essay to try and tell people what it was like for us:
http://blog.seattlepi.com/lynscircle/archives/182767.asp
Thanks for at least talking about the problem.

Posted by Rebecca | November 7, 2009 10:28 AM
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