the manual…

Posted on Friday 11 July 2014

Back in early May, I was looking into the NIMH ARA funded RAISE study [Recovery After an Initial Schizophrenia Episode], an as yet incompleted program being used as a template for a Congressionally mandated SAMHSA block grant allocation of funds to treat these patients:
One component of this RAISE program was something called Individualized Resiliency Training [IRT], basically designed to teach these patients adaptive skills – to be "resilient": 
I got a bit diverted by a comment by Sandra Steingard who brought up a fascinating program from the days right after Thorazine was introduced for the treatment of Schizophrenia in the mid 1950s called The Vermont Longitudinal Study of Persons With Severe Mental Illness done by Dr. George Brooks and his staff. The patients who were unable to leave the State Hospital after being treated with the newly introduced Thorazine then underwent an extensive psychosocial rehab program – something along the lines of the therapeutic community model. The combination of medication and this additional treatment was successful in getting these medication-only-treatment-failure cases out of the hospital, and had good results for the long haul. That’s the subject of these three posts:
I’m still wandering around with this topic. This post adds a 1963 paper to the mix written by two prominent psychiatrists of the time – one British [as in Max Hamilton of the Hamilton Depression Rating Scale] and the other from Australia, Anthony Hordern. As you recall. 1963 was the year of the Community Mental Health Act that established public mental health centers in the US as a part of the "deinstitutionalization" process already underway. Enthusiasm for the neuroleptics was high in the US in 1963. These authors had a somewhat different take on things [I included my purloined not-very-good OCR copy because I think it’s worth a read if you have any interest in this topic]:
The British Journal of Psychiatry. 1963 109:500-509.

The advent of the phenothiazines as a treatment for chronic schizophrenics has been enthusiastically hailed as a great advance, but the history of medicine teaches that the enthusiasm with which a new treatment is greeted is not necessarily a measure of its efficacy, and this is as true of psychiatry as of other branches of medicine. In general, the results obtained with the phenothiazines have not bettered the results of those pioneers who introduced "moral treatment" over a century ago. The present-day equivalent of "moral treatment" has also achieved good results, and its supporters are not over-enthusiastic about the value of the phenothiazines. This review has attempted to bring some sort of order in the conflicting reports and an examination of the work done to combine these two forms of treatment has shown that their role is not yet established. Many more investigations will have to be made to establish the value, indications, and inter-relationship of the various treatments available for the mental hospital chronic patient.
By the time I came along [1974], "deinstitutionalization" was something of a done deal. The megalithics State Hospitals had emptied out and closed their doors. Central State was replaced by a Regional Hospital System in Georgia, but beds were disappearing at what seemed like an alarming rate. So it was the Era of the Revolving Door. Patients were admitted to the hospital and back out in a matter of days. It was called "Stabilization" which essentially relied on neuroleptic medications. The hospitals were brief custodial medication units. There were an increasing number of "street people" – many with chronic psychotic illness – and there was a migration of these patients to the urban centers, often given a bus ticket by the rural sheriffs to get them out of the small towns. The system that relied essentially on medication and brief custodial hospitalization sure didn’t look very effective to me. It wasn’t pretty, and was a striking contrast to the formal lectures about community treatment given to students in training. I personally never saw an effort like that described in the Vermont study, or like some of those "moral treatments" mentioned in the Hordern and Hamilton Drugs and "Moral Treatment" article. I just saw Drugs and More Drugs.

While the RAISE study and the recent plan to implement something like it in the States through dedicated Block Grants even before the RAISE results are in seems more rushed and driven by the availability of funding than one might like, that’s the way things work in the real world. The ARA stimulus money becomes available – jump on it. The SAMHSA Block Grant money comes along – grab it. In this world, you take advantage of any breaks that come your way. The thing that worries me isn’t that, it’s specific – it’s the Individualized Resiliency Training [IRT] aspect of the program. I had my say about that earlier [from on IRT, some comments…]:
    Speaking of honesty, again  with this, of all groups, "honesty is the  best  only policy." For example, on page 181 under Summary Points for – What is psychosis?, the manual includes:

    • Scientists believe psychosis is caused by a chemical imbalance in the brain.
    • Both stress and biology contribute to psychotic symptoms.
    • Biological factors contribute to this chemical imbalance in the brain.
    I doubt the authors really know that, or even believe it. I expect the motive in putting it there is to simplify things for the patient. But there’s nothing we know about Schizophrenia that’s "dumb." The Manual is filled with pseudo-expertise and, as Dr. Bracken rightly says, "It is much better to start with doubt, with questions, with openness." And when he says "questions," he means the explorative kind.

    I won’t go on and on here. I expect I’ve really already said what I wanted to say in another IRT prequel…. I think the reason this doesn’t feel like something new is that it’s about training the patients, yet it’s not informed by the patients themselves or what we know about them. What would be new would be to organize this around learning together rather than how to train them. I agree with Dr. Steingard that these clinicians need something to go on, but I think we’d be much more effective if we tried to train the clinicians in the ways of these specific patients. The manual may offer a road-map to some of the areas in need of exploration [and some of the examples are useful]. But if the point is to teach the clinicians to do their jobs ["many well meaning and caring people will use the manual but end up not following it to the T"] and the hope is that "some of them are bound to look up and see the human being sitting in the room," why not start there in the first place?

    This RAISE program is a good idea. It gives these patients some time to work with clinicians who can get to know them. The clinicians aren’t "dumb" either. We need to support them not as trainers with a training manual, but as people who have been given the tools [and the opportunity] to engage their patients, and learn with them what might move things along a helpful path…
As I gave this manual a second chance and read it again, it became clearer to me what bothers me about it. It’s strategic. People with paranoid trends [these patents] see through strategies and are suspicious of their indirectness independent of the content. If implemented as it is, they will feel "talked at" rather than helped. So I hope Dr. Steingard is right, "many well meaning and caring people will use the manual but end up not following it to the T." The principles in the Vermont Study and the Drugs and "Moral Treatment" article would be a useful guide to its rewriting…

An Aside: Discussions of this topic this often deteriorate into Either/Or ["Moral Treatment" vs Drugs] and tend to become contentious. The "Moral Treatment" advocates are characterized as trying to love people into health and in turn become self-righteous accusers. Those advocating Drug treatment are seen as controlling and ignoring the patient’s humanity while seeing their opponents as naive. I tend to see window-shades coming down when such arguments get going and become uncontrollably sleepy. I think that’s a developed somnabulism after twenty-five or thirty years of hearing those arguments go nowhere. I’m a Both person. Without the neuroleptics, we had huge "snake pits." Without "Moral Treatment," we had a different kind of chronic problem with mental patients living under bridges and in prisons. So I’m a careful-and-wary-use-of-existing-medications person and also a moral-treatment-is-the-way-to-go person who is in that dualistic position for life and will likely ignore invitations to change my mind. And while the below [from Drugs and "Moral Treatment"] was written in 1963 about a previous era, it could’ve equally been written in the present about the contemporary past:
    Moral Treatment in Decline: The Rise of Custodialism

    Many authors have discussed the slow attrition of "moral treatment", attributing its decline to such general factors as increasing urbanization, mass immigration, increase in the size of mental hospitals and, in psychiatry itself, to a mechanistic approach patterned on the discoveries in cellular pathology made by Virchow and Van Gicson. In addition, towards the end of the nineteenth century, the development of Kraepelin’s comprehensive nosological system led to a preoccupation with patterns of disease or constellations of pathological entities while mental hospital inmates were regarded as of little interest and of only minor importance as individuals. Whatever the reason, the mentally ill were regarded as suffering from incurable degenerative diseases and were locked away in huge human warehouses which, of necessity, began to be organized on custodial lines. Conditions worsened towards the end of the nineteenth century, and as late as Meyer’s early days at Kankakee, a vigorous search for specific causative agents or noxae, adequate to account for the various manifestations of mental illness, was stall in progress. In the general climate of enthusiasm which surrounded this quest for specific etiological factors the lessons of the past were forgotten or ignored, and only painfully and slowly did academic psychiatry, through Bleuler, Freud and Meyer, return to consider the claims of individual patients.
    July 11, 2014 | 9:00 AM

    I will add to Dr. Nardo’s quibbles one of my own. “Resilience” as it is used in these posts, is a very pull-yourself-up-by-your-own-bootstraps quality. I don’t think that’s a very useful way of thinking. Resilience is more usefully conceptualized as a social, interpersonal process. It’s not a thing that a person “has.” It is a process of mutual support, education, reliance, trust, engagement, vision, labor, and the like that people participate in together.

    Bernard Carroll
    July 11, 2014 | 9:19 AM

    The spats around this issue of drugs versus psychosocial treatments have been unnecessary and unproductive, as you say. Of course, the best outcomes can be expected when they are used together. This understanding was unquestioned from the late 1950s until the late 1980s.

    Regarding the Vermont Study, when I read the original reports recently I noted that 84% of the patients were in fact still being prescribed chlorpromazine at the follow-up point. Fifty percent of patients were adherent, either continuously or on an as needed basis when they felt symptoms were returning. It would not be correct to characterize this study as proving that the drugs are not needed. I have commented before that without chlorpromazine they would not have got to first base, though they needed much more than just chlorpromazine to get to home base. The main value of the Vermont Study lies in its demonstration that for some fortunate minority of patients with chronic psychosis an acceptable recovery without ongoing drug treatment is possible. That understanding reminds us of what Hordern and Hamilton emphasize – the clinical axiom that all patients are not the same, so individualized treatment approaches under careful supervision are appropriate.

    Steve Lucas
    July 11, 2014 | 10:53 AM

    I was reminded by the comments in the post:

    That a common complaint of specialist is they do not see patients in a timely manner.

    What they often find is a problem with polypharmacy, as often noted by Mickey, and a lack of understanding on the part of the generalist of the true nature of the problem. One hospital based blogger has written about high medication counts contributing to disorientation and other behavioral problems. This in turn masks physical problems.

    The first order of business is getting the patient stable and then not treating what they have been diagnosed with, but coming up with a new diagnosis. The first issue is usually a major reduction in medication, with a move to generics. Why a doctor will prescribe a branded drug to a low income person they know cannot pay for is beyond me.

    The second step is bringing in only those consults needed to define any physical maladies. This doctor does not believe in the shot gun approach to testing and fishing for problems does not serve the patient.

    The final step is a patient plan that often includes social services and nurse specialist. The unwillingness of doctors to share patients and the related revenue stream has become rampant and detrimental to the safety of patients.

    As Mickey has pointed out it is the slow thoughtful process, with the patient at the center, which will ultimately produce the best results.

    The rush, rush “Book em Danno” nature of today’s medical office does not lend itself to the type of interaction that is necessary to treat these troubled patients. Pharma makes it so easy to believe a doctor can do anything and ego drives the nail into the patient’s coffin. Boredom and the daily grind of a general practice makes it easy for the generalist to justify treating outside there area of expertise and reinforces their personal self worth as a “doctor.”

    Steve Lucas

    July 11, 2014 | 6:44 PM

    Interesting, Steve; but I would say that the first thing should be mental health professionals asking the patient what they want and need in a given moment and to accept that, at times, the patient doesn’t want or need anything from a mental health professional.

    Once someone takes on the role of arbiter of all that is appropriate for any given person, they’re making it all about THEM and what they want.

    July 11, 2014 | 11:57 PM

    Dr. Carroll,
    While I agree that the Vermont study does not prove that some people can recover from psychosis without drugs, it also does not prove that drugs are necessary. The folks who went I to the Brooks rehab were the ones who did NOT have a robust response to drugs.
    There are now an array of long term studies that coelesce around the suggestion that there are something that happens after 4-5 years and that people on less or no medications begin to show greater improvement. I have identified 3 RCT’s that show this, Wunderink’s being the most recent.
    In my opinion, the most important lesson of the VT study is that the Krepelinian notion of schizophrenia as a deteriorating condition is not true.
    This does not need to be a pro or anti drug discussion but rather an inquiry into the question of I what way are drugs useful and I what way they are best used.

    Bernard Carroll
    July 12, 2014 | 12:41 AM

    Sandra, your first sentence has no basis in what I wrote today. I stated that the Vermont Study demonstrated “that for some fortunate minority of patients with chronic psychosis an acceptable recovery without ongoing drug treatment is possible.”

    Keep in mind, however, that the VT Study was reported as a completer study rather than as an Intent to Treat (ITT) study – a methodology that would not pass muster today for an outcome study. The cases reported were an enriched sample of survivors, not representative of the original population. The mortality was considerable by today’s standards – 34% of the 82 schizophrenia cases and also 34% of the 29 affective disorder cases had died by the follow-up point. The authors did not discuss the causes of death, in particular they made no mention of suicides. In that respect they are remiss. We would not tolerate that in a contemporary clinical drug trial.

    I agree with your final point and I would say the 1963 Hordern-Hamilton paper is a good place to start.

    berit bryn jensen
    July 12, 2014 | 4:53 AM

    The Western Lappland practice of dr Jaakko Seikkula, and colleagues over years, has proven that most patients recover and stay well without nevroleptic medications. How best to help the remainder is a challenge that may become less awsome as honest basic research and honest common sense hopefully unravels the roads that lead people into mental suffering and psychosis.
    There are gigantic learning opportunities right in front of our eyes.

    “What happened to you?” is a good starting point. But I could not ask the distressed woman on the sidewalk that question. She spoke Greek in Oslo, just Greek, and pointed to the mobile telephone I’d just used. So she used it too, to call the employer, I guessed, who’d not showed up at the closed grocery shop with Greek specialities, in front of which we were standing…
    Still I know. She is one of the economic refuges coming up north to survive the Greek crash, entangled in the maze of frauds and cold hearted lackeys that are shutting off the water that people in Detroit and everywhere cannot live without. Suicides are up in Greece, Spain, Italy and the UK under what’s called policies of austerity, the old feudal game of the elite fleecing the people, as is the sale of antidepressants and other medications.
    I think psychosis in most instances may be overload of stressors and insufficient resources of coping in the community, the family and the designated patient. That’s when the doctors come in. And your arsenal of remedies is limited too, but the good ones do no harm. Talking about it, may do a surprising lot of good. Thank you, dr Nardo, for keeping it up!

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