functional improvement…

Posted on Thursday 21 August 2014

This graph is from a legal article about something else, but the data seems solid. There’s a faint line above the abscissa which marks the period when I was in training and then full time on an academic faculty, daily involved with the treatment of psychotic patients. It was towards the end of the massive deinstitutionalization of mental patients. As Dickens said, "it was the best of times, it was the worst of times."

"it was the worst of times"
Deinstitutionalization was a massive happening. People like to think of it as something the antipsychotics were responsible for. True enough that it couldn’t have happened without them, but they came into the picture in the mid-1950s and other pieces were needed. In 1963, the Community Mental Health Act poured enormous resources into Community Treatment [for a short while]. But there were two other pieces – SSI [disability income] and a ruling that patients had to be paid for their labors [Souder v. Brennan] taking vital revenue away from the hospitals. This is not meant to be a definitive history, just a picture from the time I came into consciousness – meaning that when I showed up, the resources were disappearing like the tide returning to the sea [except it just kept going out]. So by then, the lectures and articles were about the wonders of Community Treatment and the evils of institutionalization, but the days and nights in the ER were filled with the chaos of too many psychotic people who couldn’t go home, and there was no place else to go. The overcrowded and shrinking hospitals became "revolving doors" with very short stays. It was a time when medication was becoming king and the terror about long term consequences was ever-present, but undealt with…

In those days, we talked about TransInstututionalism as a coming possibility – the net movement from Mental Hospitals to other institutions [like prison]. That graph up there is rate of institutionalization, not absolute populations – so it doesn’t do total justice to the extent of the problem we now have – the huge problem of mental patients living in our jails. TransInstututionalism happened. And don’t think for a minute that they are medication free. To my mind, it’s a tragic irony that so many of the liberated mental patients have moved from the frying pan into the fire.

"it was the best of times"
In spite of all the negative things one can say about the past and the present, that period of my line on the graph, it was a time when people with psychotic illness were seen, and saw the light of day. For the century before, they just went away. Looking at the charts of older patients in my time, one could read "Agitated, Psychotic. To CSH." and the next entry might be decades later, parentheses on their life in Central State Hospital – out of sight and out of mind. In my day, we actually saw the patients and had the idea that they could improve. We saw a lot of them able to live among us, and saw some get a whole lot better. Society was more tolerant than we might have thought, sometimes even kinder than we expected, and some of the most obviously impaired chronic patients found ways to survive.

I didn’t change to psychiatry to treat chronic psychosis, but once I arrived, I found it fascinating [and still do]. For one thing, psychotic people teach us all about the workings of the mind because it’s all right out there. And one quickly learns that with a bit of ongoing help their lot can be dramatically improved – that they are more persons than Schizophrenic. Another super-pertinent thing that every discontinuation study ever done confirms, no matter what the experts recommend they do about medication, the majority of patients regularly discontinue antipsychotics on their own anyway.

since I was there
I feel comfortable saying that the injunction to keep people on medication indefinitely is partly a legacy from those days, preventing relapse requiring hospitalization [in the face of no hospitals being available]. Even the most recent Cochrane Systematic Review concludes that maintenance neuroleptics are better than placebo in preventing relapse as if that’s the major question:
The results clearly demonstrate the superiority of antipsychotic drugs compared to placebo in preventing relapse. This effect must be weighed against the side effects of antipsychotic drugs. Future studies should focus on outcomes of social participation and clarify the long-term morbidity and mortality associated with these drugs.
That’s true – as true as it was in 1974. We knew it then as we do now. In those times, many of us were still taught to go for the lowest possible maintenance doses [or none] because of the fear of causing Tardive Dyskinesia. But the official recommendation was maintenance medication, even though compliance was very low. A look at today’s APA Guidelines shows essentially the same recommendation today for stable patients – still heavily focused on relapse prevention.

Wunderink et al
What’s different about the Wunderink et al study reported in the last post [well worth reading…] and other recent studies is not just that they confirm a minority recommendation from the past. It’s they show with evidence that there’s another big reason to try for the minimal effective dose or to aim for eliminating medication altogether at some point. The patients treated in this way have a dramatically better chance of recovery – a functional recovery. That they will have more relapses, or that some who will require long term maintenance will have more relapses along the way is a given. But the possibility of long term functional improvement is worth the problems if it pans out in further studies.

While we await the coming or not coming of future wonder drugs, this is the time to give this a real test. There’s money in the SAMHSA Block grants [see out of the loop…]; there’s decent evidence; and there’s the long held intuition of a lot of us that medication is necessary for acute psychosis, but that chronic use dulls the mind and may well interfere with moving forward for those who can. There’s sure enough to justify more decent trials in First Episode Psychosis, maybe in more chronic cases as well. Who knows, maybe we could even make a dent in that Jails & Prisons graph that we could be proud of…
    Steve Lucas
    August 22, 2014 | 8:04 AM

    What I find troubling is the prescribing habits of suburban GP’s. These doctors are noted for treating symptoms with a never ending supply of medication and never ever stopping a drug or taking away a drug.

    They also actively promote a medical dependency with the required 90 day office visit. One doctor a number of years ago told me I would feel so much safer with 90 day visits, even though at that time I had no medical condition and was taking no medication.

    This attitude has morphed into the med checks that pass for psychological treatment and the results can be seen in the graph.

    We do need a serious talk about mental health in this country. Some will have to give up the idea that everyone has a choice, and a few may need supervision in a facility other than prison. The other side is we need to change the focus of our spending. Prisons are expensive and waiting until after the fact to spend money on care only increases our cost.

    Social programs are often equated with welfare and morph into extended programs not intended by the original concept. This creates a dependency on the part of the client. The reverse again is some feel every one can pull themselves up.

    My reality is we need to intervene before the criminal act with a support system that is focused on long term health and removing that person from a dependency situation. We also need to realize a few will need to be placed in an institution were they will receive constant supervision.

    Hopefully we have learned not to repeat the failures of the past and these new institutions will reflect a new ethos of care.

    Steve Lucas

    August 22, 2014 | 9:00 PM

    Just wondering if some of the problems with allowing patients space to make their own way might be somewhat related to focus on symptoms, instead of signs that the patient is improving that aren’t measurable, but clearly indicate improvement. A person can experience anxiety, for instance, just the same as the anxiety they were diagnosed with in the first place, but take effective action to improve their situation, in spite of it. The level of anxiety they suffer might not be the best measure and maybe shouldn’t be considered a primary measure.

    The same with the Hearing Voices Network— many people hear voices but don’t treat them as being psychotic because they aren’t psychotic, even though they hear voices. And some people who have been psychotic and tortured by the voices they’ve been hearing, have been able to change their relationship to the voice(s) and relieve themselves of much of the fear and horror the voices cause.

    Often times, just seeing the possibility of change or healing is enough to spark attempts at change, some or many that may be effective; but even failures have something to teach us. I think the processes of finding one’s own way often needs a catalyst. Believe it or not, I’m going to use an anecdotal sports analogy now.

    Two weeks after Olga Korbut did her groundbreaking back flip off the top bar of the uneven parallel bars then caught the lower bar, little girls on my brother’s gymnastics team were doing it reliably. It wasn’t that the move was particularly hard to do, it was just that it hadn’t been done.

    Seeing possibility and demonstrating it is a vital part of changing. An environment that limits itself to the degree that it cannot accept challenges to the status quo is not growing and not letting others grow. Which, is why I think that much of the progress that is being made during hospitalization can be credited to other mental patients and/or being able to see a variety of ways that other people suffering crisis(es) frame it and cope it with.

    Of course, many doctors and many drug treatments can surely be credited, as well, but the measure of success is quite limited.

    August 24, 2014 | 1:47 PM

    Steve, you say
    They also actively promote a medical dependency with the required 90 day office visit. One doctor a number of years ago told me I would feel so much safer with 90 day visits

    Don’t you ever wonder if we should confront these same practitioners with these questions: Do YOU see you GP every 90 days (you’ll feel so much safer)? How about your auto mechanic–do you take you car in every 90 days–you’ll feel ever so much safer. And your dentist? And the exterminator? And the hair stylist? And your portfolio manager? And your banker? And your security system manager? And your kids’ doctors . . . dentists . . . coaches . . . teachers? Are patients the only ones who need to get on the quarterly-merry-go-round? Last I knew, patients–like most other humans–have only 24 hours in a day . . . and most have a livelihood to procure and familial life to maintain.

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