I mentioned in the last post that the way I got to know Sandy Steingard was in her objection to my use of the moniker, Schizophrenia, in the traditional way – as a unifying term for a variety of psychotic illnesses. It was a term I learned early in training, dating back a century to the days of Emil Kraepelin and Eugene Bleuler. She was right to question the inertia of a concept unmodified by my subsequent experience which was with non-psychotic patients. I remember those days in training on an acute ward in the latter 1970s. It was an era when the dilapidated State Hospitals were rapidly closing, accompanied by an uplifting rhetoric of community treatment. Institutionalization was the new enemy, something caused by the psychiatry of the past. The glue that was going to hold this plan together was antipsychotic medication. By the time I came along, the medications weren’t looking so hot either. There were short term neurological side effects, ominous long term neurological side effects, and the medication itself wasn’t particularly pleasant – so many most a lot of patients left it behind when they left the hospital.
There was an obvious double·bind in this story if you were a psychiatrist on that acute ward. Hospitalization was seen as abusive, abridging the patient’s civil rights and due process – institutionalization. The way to avoid hospitalization was anti·psychotic medication – likewise seen as coercive chemical mind control. Many of the patients were violent, psychotic, brought in by squads of policemen. There was nothing right to do, and you had to do something – often quickly. Back then, many of the patients had no social supports and were literally on the streets. The disconnect between the lectures of the community treatment advocates and the reality of that ER were dramatic. The fog of war would’ve seemed a better topic for the young psychiatrists in that strange place, made even stranger by the circumstances of the era.
And then there were the articles and books by people like R. D. Laing, Otto Will, Harold Searles, Loren Mosher, etc, articles that described some new version of the Moral Treatment of the past where psychotic people were in a supportive, well-staffed milieu tratment environment with minimal or no use of medication. The places had names like Chestnut Lodge, Kingsley Hall, Soteria. From the acute psychiatric ward of Grady Hospital, they seemed like Shangri-La or Xanadu, places where one could possibly do the right thing rather than operate in the chaotic reality of the present. But there were only a few and they were very somewhere else.
See the discussion between Dr. Carroll and Dr. Steingard in the comments to the last post.
While many trying this method of treatment for psychotic illness were outside the mainstream of American psychiatry, Loren Mosher was not. Trained in some of our best programs [Stanford, Harvard, Yale, the Tavistock Clinic], he was the first director of the Center for Schizophrenia Studies at the NIMH. Disillusioned with the effectiveness of antipsychotic medication, he launched his project, Soteria, in 1971 as a residential treatment facility for young first-break psychotics, and they fared well in randomized control studies against usual treatment [which meant primarily antipsychotic medication]. Soteria’s patients were only given medication when there was no other choice. In spite of documented successes, Mosher was let go from the NIMH in 1980, and Soteria closed for lack of funding in 1983. He became an increasingly vocal critic of the alliance between organized psychiatry and the pharmaceutical industry, and saw his marginalization as a direct result of that alliance. Mosher’s story is championed by Robert Whitaker, author of The Anatomy of an Epidemic and Mad in America.
… two important lessons to take from Dr. Steingard’s article are that one size does not fit all concerning long term antipsychotic use, and that such decisions need to occur within the context of an established therapeutic relationship.
Programs like Soteria adapted this principle to psychotic illness. They were tolerant of aberrant behavior, respectful of the fears and interpersonal fragility of psychotic people, yet confrontive of behavior that took the patients away from engagement. The content rather than just the presence of psychotic thought was explored. In follow-up, these disturbed patients reported feeling cared for – often to the surprise of the staff. And by objective measure, their improvement was equal to or better than their matched controls treated with antipsychotic medicine as a mainstay. These few programs were much bigger than simply medication-free boarding houses. They were therapeutic communities tailored to the specific vulnerabilities of psychotic people. And Loren Mosher was one of the few to quantify their impact in the traditional ways with objective and statistical outcome measurements. He had succeeded in doing a very hard thing. Little wonder that he was bitter at being marginalized by the psychiatric community of the era, an era that persists to the present.
This is obviously a loaded topic for me. Not just the part about the treatment of psychosis. The whole idea of the therapeutic relationship, the therapeutic alliance, the therapeutic community, all of those things that had attracted me to psychiatry were not only marginalized, they became objects of disdain in that time of change in the 1970s and 1980s – anachronistic fluff to be discarded in favor of a return to the model of doctor as scientific expert with objective recommendations. There was much in need of change in those days, but the resulting surgery was disfiguring. As is increasingly apparent, it opened the door to the intrusion of corrupting commercial interests the likes of which have never before been encountered in the field of medicine.
THE TREATMENT OF ACUTE PSYCHOSIS WITHOUT NEUROLEPTICS: SIX-WEEK PSYCHOPATHOLOGY OUTCOME DATA FROM THE SOTERIA PROJECTby LOREN R. MOSHER, ROBERT VALLONE & ALMA MENNInternational Journal of Social Psychiatry. 1995 41[3]:157-173.
Background: Today’s treatment of acute psychosis usually includes short-term hospitalization and anti-psychotic drug treatment. The Soteria project compared this form of treatment [control] with that of a small, home-like social environment, usually without neuroleptics [experimental].Method: Newly diagnosed, young, unmarried persons with DSM-11 schizophrenia were randomly assigned to treatment in two experimental and two control settings. Subjects and families were assessed at admission on 29 independent variables. Treatment environments were studied by means of Moos’, COPES or WAS scales. Three dependent six week psychopathology outcome measures were collected.Results: The groups were comparable on 25 of 29 admission variables. The environments of the two experimental and two control settings were different from each other. The milieus were similar to each other within each condition. At six weeks, psychopathology in both groups had improved significantly, and similarly, and overall change was the same.Conclusion: Specially designed, replicable milieus were able to reduce acute psychotic symptomatology within six weeks, usually without antipsychotic drugs, as effectively as usual hospital ward treatment that included routine neuroleptic drug use.
by Bola JR and Mosher LRJournal of Nervous and Mental Disorders. 2003 191[4]:219-229.
The Soteria project [1971-1983] compared residential treatment in the community and minimal use of antipsychotic medication with "usual" hospital treatment for patients with early episode schizophrenia spectrum psychosis. Newly diagnosed DSM-II schizophrenia subjects were assigned consecutively [1971 to 1976, N = 79] or randomly [1976 to 1979, N = 100] to the hospital or Soteria and followed for 2 years. Admission diagnoses were subsequently converted to DSM-IV schizophrenia and schizophreniform disorder. Multivariate analyses evaluated hypotheses of equal or better outcomes in Soteria on eight individual outcome measures and a composite outcome scale in three ways: for endpoint subjects [N = 160], for completing subjects [N = 129], and for completing subjects corrected for differential attrition [N = 129]. Endpoint subjects exhibited small to medium effect size trends favoring experimental treatment. Completing subjects had significantly better composite outcomes of a medium effect size at Soteria [+.47 SD, p =.03]. Completing subjects with schizophrenia exhibited a large effect size benefit with Soteria treatment [+.81 SD, p =.02], particularly in domains of psychopathology, work, and social functioning. Soteria treatment resulted in better 2-year outcomes for patients with newly diagnosed schizophrenia spectrum psychoses, particularly for completing subjects and for those with schizophrenia. In addition, only 58% of Soteria subjects received antipsychotic medications during the follow-up period, and only 19% were continuously maintained on antipsychotic medications.
"Therapeutic Relationships: Perhaps the most important therapeutic ingredient in Soteria emerged from the quality of relationships that formed, in part, because of the additional treatment time allowed. Within staff-resident relationships, an integrative context was created to promote understanding and the discovery of meaning within the subjective experience of psychosis. Residents were encouraged to acknowledge precipitating events and emotions and to discuss and eventually place them into perspective within the continuity of their life and social network."
Just curious, having worked for 3 months at a program serving these types of patients, is this dialogue going to persist trying to validate there is a sizeable portion of people with signs and symptoms of schizophrenia who should be allowed, if not encouraged, to stop antipsychotic medication use?
If so, then I guess ACT programs will become irrelevant? Because I think it would be interesting to have a further post here, or have a commenter from the threads direct us to a site who would have an open ended and unbiased discussion, so what will happen when patients push to get off antipsychotic meds under this relentless claim that all antipsychotics have much more risk than benefit when used to treat persistent psychosis, forget subgroups like schizophrenia for the moment.
Let me just state this: in those 3 months working at the ACT program, I saw dozens of people who, if not strongly encouraged to be on meds AND also be involved in support systems (note the combination and not JUST MEDS), they would not make it in the communities they live in now. Period.
So, I respect there is going to be a small but quantifiable percentage of people who should be allowed to consider the opportunity to get off medication, if they have adjuncts or alternative treatment options to help them stay healthy, functional, and stable. But, with the group that comments with regularity who advocates persistently and loudly all meds need eradicated from public consumption, what a disaster awaits us if this message is falsely sold as a universal plan.
It is a case by case basis, so I hope those who are unbiased and objective don’t lose sight of that treatment plan course. Yes, antipsychotic medications have risks/consequences, but, so does untreated psychosis.
Where is the balance being advocated here?! And, what happens WHEN a patient with persistent psychosis is encouraged or allowed to go off meds and then has a serious consequence in the community that disrupts others’ lives beyond said patient? Let’s have a brutal moment of candor, there will be an outcry of accountability and liability for someone to answer for the consequences, it is what this society continues to do!
De-institutionalization was primarily an effort stop spending on the public good and many well meaning people fell for it. Of course, the institutions needed to be reformed, but their value as sanctuary is invaluable. Simply having a place to stay and being fed while not having to deal with overwhelming demands is priceless. Psychotic episodes are exhausting, merely recovering physically takes time. A lot of poor, working people who end up in the psyche wards have never had a vacation. The lion’s share of need for the vulnerable and mentally overwhelmed is created by a society is that not human. Soteria’s magic, was not participating in dehumanizing behavior.
In the end, the costs of de-institutionalization, over-diagnosing, and over-medicating is unsustainably costly and harmful. Sanctuary, by comparison and social services are chicken feed. The social illness that makes quarterly profits in medicine more important than the long term care of vulnerable people is inexcusable. The “It” in psychiatry is business, not medicine, not healing, not helping— it’s exploitation.
Until the “It”of psychiatry is made mentally healthy and emotionally intelligent it will be doing more harm than good and being insanely well rewarded for it among too few.
Joel,
I’m not sure I’m advocating either way. I’m certainly not anti-medication, or even anti-antipsychotics [I take that back because I am anti-antipsychotics in the treatment of non-psychotic illness]. The reason I was looking for the early reports from the Soteria Project was that my recollection is that the patients, whether they were in the group on or off medicines had a better quality of life than that of the control group. I gather that is Dr. Carroll’s recollection as well, “NIMH quashed the nonconforming voice of Loren Mosher regarding quality of life outcomes.” In my own limited experience, I’ve never personally gotten the few patients I’ve followed long term medication-free forever. I think I’d be better at it now because I’m less afraid of treating the high level of anxiety these patients often have with Benzodiazepines. I think you’re saying this is a case by case issue, and if that’s what you’re saying, I totally agree. But in the treatment of psychotic illness, that hasn’t been the routine.
Were I advocating for something, I think it would be for people with an illness as big as psychosis to have a therapist – not in some attempt to cure the illness – but to be around to help with whatever needs helping, whether it’s psychological or social. There’s not much that can happen in life that’s bigger than psychosis…
Wiley,
A great line, “Sanctuary, by comparison and social services are chicken feed.” It’s true. In the past, people couldn’t get out of the hospital. In my lifetime, they couldn’t get in.
Dr. Mickey has graphically described several times what it is like to deal with floridly psychotic patients. And if it is like that for us, consider how it is for the patients. Loren Mosher himself used antipsychotic drugs for many of his patients in the acute phase. He had a probably valid point about better quality of life outcomes if the drugs could be discontinued. He was not alone in that point of view. The controversy over the Soteria Project concerned its generalizability. In the end, as I recall it from a distance, he continued to receive federal research funds for a long time but he was edged out of policy making positions. In other words, he was not put out of business entirely as a clinical scientist, but his impact on policy such as clinical guidelines was small.
As both Dr. Mickey and Dr. Hassman imply, we cannot make policy for a technique (drug discontinuation) outside the context of the cases themselves or of the treatment setting. The initial cohort of cases at Soteria were recruited in the 1970s. They were young, in a first episode of psychosis, diagnosed by DSM-II criteria, contained a significant number of what were then called schizophreniform cases (good prognosis) and likely also a good number of good prognosis psychotic mood disorder cases mislabeled as schizophrenia (that’s what the historic US-UK comparison project taught us in the early 1970s). I don’t know how much the methodology tightened up in later years, but there were good reasons for reservations about the generalizability of the work done with the early cohorts.
Great comments! Dr Carroll mentions several points where bias might enter the field, though it was randomized so group assignment wasn’t selective. And there are other factors. Dr. Mosher was enthusiastic – John Henry against the machine. He was described in a eulogy as quite involved, “There are a number of psychiatrists who support our work, but few who simply liked hanging out with survivors the way Loren did.” Milieu Units are usually staffed by non-professionals whose skill and enthusiasm for the work is a function of their leadership. Was this result reproducible without the persona of Dr. Mosher himself? These units have been staffed by the greats: Harry Stack Sullivan, Frieda Fromme-Reichman, Loren Mosher, etc. How would they fare if supervised by mere mortals like you and me? But even with those possible confounds, it deserves repeating with sophisticated design and outcome measures. Beside the reported success, it is an intuitively engaging approach…
First of all, this is a beautiful blog. Thank you.
With regard to concerns raised by others, I would encourage them to carefully look at the Wunderink study and consider its implications for the first instance of psychosis. At that time, none of us can tell if this is a person who will go on to have a condition that we label “Bipolar” or one that we label “Schizophrenia”. Many first episode studies that start out with the intent to study, let’s say, Schizophrenia, soon realize that we are not very good at making these distinctions (probably because these distinctions are, as Thomas Insel has said, “fictive”). Therefore, to dismiss Mosher’s experience on the basis that many of them were destined to do better by dint of the diagnosis is problematic for me since everyone would have been exposed to the same treatment at the outset.
Then, once someone has been on these drugs, the relapse rate is higher and subsequent relapses just reinforce the need for long term medications.
Although the Open Dialogue numbers are low, it remains astonishing to me, that an entire public mental health system could operate for over 20 years on the premise that antipsychotics are NOT first line treatments, that they can be stopped in 80% of individuals, and nevertheless yield a long term outcome in which 80% of individuals are working and not on disability. The core treatment in Open Dialogue is engagement with both the individual and the family. It is based on the same sort of respect and support that Mosher promoted.
Many who criticize psychiatry are criticizing our reluctance to seriously reckon with the implications of these important studies.
What I have always liked about Loren Mosher is the centrality he gives to the personal relationship. As you cite above: “Perhaps the most important therapeutic ingredient in Soteria emerged from the quality of relationships that formed.” Crucially, this breaks away from emotionally detached (self protective) or even condescending ‘caring’ and connection becomes more relevant than thinking in terms of curing. That’s my experience.
You may have seen this: Systematic Review of the Soteria Paradigm for the Treatment of People Diagnosed With Schizophrenia, by Dr Tim Carton et al http://schizophreniabulletin.oxfordjournals.org/content/34/1/181.full.pdf+html
In the latest New Yorker (December 9), a piece by Ian Parker describes the FDA review of Merck’s potential sleep drug, suvorexant.
A disagreement arises between FDA advisors and Merck about dosage, what might be effective AND safe.
The article is eye-opening in that it confirms what we’ve always suspected: Drug dosage designated as “effective” is entirely arbitrary. (Finding one that is also “safe” is a new wrinkle at the FDA.)
Applying this to, say, antipsychotics, many people are probably overdosed at pharma-designated “effective” dosages.
Even if prescription of an anti-psychotic is appropriate (in my belief, for very rare cases), it behooves the doctor to protect the patient’s health by finding the absolute minimum level of effective dosing.
The very lowest truly effective dosages must vary highly from patient to patient; finding this may require careful reduction, as Dr. Steingard has explained, so as not to disturb whatever psycho-neurological equilibrium has been reached.
For the information of the prescribers reading this, I have several people on SurvivingAntidepressants.org successfully going off atypical antipsychotics (most with non-psychotic conditions, if you can say they had any psychiatric conditions at all) via very, very small reductions in dosage.
They’re doing this after previous unsuccessful withdrawal attempts brought on a range of withdrawal symptoms, some of which might be mistaken for mania or psychosis even in those who had no similar pre-existing symptoms.
The symptoms of nervous system destabilization brought on by too-fast tapering are almost universally misdiagnosed as relapse or emergence of new psychiatric illness. Thereby, existing statistics of relapse after discontinuation of psychiatric drugs cannot be trusted.
At the very least, the dosage of psychiatric drugs can be minimized through very small reductions, sometime much less than a milligram per month. Very few psychiatrists utilize this technique — Dr. Steingard is an exception. It needs to be more widespread.