Furious Seasons

May 21, 2008

Study: Some Schizophrenics Do Better Without Antipsychotics

Last week, Gianna Kali who authors Bipolar Blast brought an academic study to my attention that left me speechless. It's a paper by Martin Harrow, PhD, and Thomas H. Jobe, MD, both of the University of Illinois College of Medicine's psychiatry department, and was published last year in the Journal of Nervous and Mental Disease. Its subject is what were the outcomes for people diagnosed with schizophrenia at a Chicago area psychiatric hospital 15 years after their initial diagnosis and treatment. It also takes up the tricky question of who fared better, patients who took antipsychotics consistently or patients who didn't take antipsychotics at all.

The quick, untricky answer is that the people diagnosed with schizophrenia who didn't take antisychotics had better outcomes 15 years later than the patients who did take antipsychotics. Yes, you read that right.

Before I launch into a discussion of the paper, I wanted to offer a brief disclaimer since I know this is a very emotionally charged subject. I am not trying to make an argument that anyone should be off-meds or should be on-meds. I am not interested in having that fight. I'm also not going to fly off and declare the medical model of treating schizophrenia defunct (I've noted many times, however, that it does not work very well) and that schizophrenia doesn't exist. This isn't about that.

This is about yet another tantalizing piece of evidence in how alternatives to the standard medical model for treating schizophrenia have worked out. Unfortunately, the study group in the paper simply isn't large enough to draw the kind of broad conclusions that many of us would like to draw. It is nonetheless fascinating work and joins other studies that show outcomes for people diagnosed with schizophrenia can be better for patients who step outside of the standard medical model (for whatever reason). I am thinking in particular of the WHO study of outcomes for schizophrenics in developing nations as opposed to developed nations (much better outcomes in developing nations) and a 1988 paper by Courtenay Harding, which examined outcomes of people with schizophrenia who were deinstitutionalized in Vermont in the 1950s and were sent out into the community, many of them to medication free lives (they did better than counterparts in Maine). There are other examples in the literature, of course, but for now I'll leave it at that.

And, since this paper does discuss unmedicated schizophrenia, let's be clear that the people in this study group who succeeded sans meds fell into a relatively special cohort and it's pretty clear that they didn't go off-meds willy-nilly after walking outside the locked unit door. Please keep this in mind.

Now, onto the Harrow and Jobe paper. For some reason, I was not able to get a copy uploaded onto my site this morning. I'll fix this as soon as I can. (Paper is now online here.)

"Patients with schizophrenia who had removed themselves or been removed from antipsychotic medications showed significantly better global functioning and outcome than those still being treated with antipsychotics. Detailed analyses of those patients with schizophrenia on antipsychotic medications versus those not on medications at the 15-year follow-ups also were conducted. These analyses indicated that in addition to the significant differences in global functioning between these groups, 19 of the 23 schizophrenia patients (83 percent) with uniformly poor outcome at the 15-year follow-ups were on antipsychotic medications. The data on psychosis in Figure 1 show that at the 10-year follow-ups, 79 percent of the patients with schizophrenia on antipsychotics had psychotic activity, whereas 23 percent of those not on any medications had psychotic activity. Sixty-four percent of the schizophrenia patients treated with antipsychotic medications at the 15-year follow-ups had psychotic activity, whereas 28 percent of those not on any medications had signs of psychotic activity.

That data doesn't exactly offer much support to the generally-accepted notion that antipsychotics prevent psychosis and improve global functioning and that everyone diagnosed with schizophrenia should be on them at all times. But people diangosed with schizophrenia were not the only ones who came into the psych unit with psychosis. There were people with psychotic depression, bipolar disorder (the most aggressive kind, one assumes) and other psychotic disorders. The authors don't go into their experiences in much detail, but offer this global assessment:

"The results for the nonschizophrenia patients who had psychotic disorders at index hospitalization also showed very large significant differences; patients with other types of psychotic disorders not on any medications at the 15-year follow-ups showed better outcome than those on medications."

So it's almost the same story there: no meds means better outcomes. So why is there such a huge emphasis on all-meds, all-the-time in American's mental health system much less in the broader culture? The authors state:

"A certain number of schizophrenia patients who go off antipsychotic medications and relapse are quickly brought to the attention of psychiatrists and other mental health workers when they return for treatment and/or rehospitalization; these relapsing patients are the ones from whom opinions by some about the absolute necessity of continual antipsychotic medications for all patients with schizophrenia are formed."

In other words, if researchers and key opinion leaders and such never see other types of patients with schizophrenia, then their world view is very narrow, as is their research base and so is their opinion of what modalities should guide treatment. Keep in mind, that's the authors' opinion and since they are on the faculty at a major medical school, I'd say they may have a basis for their view.

Someone needs to get this paper into the hands of Fuller Torrey stat.

So why did some people with schizophrenia do well without meds? There's a discussion of this in the paper, but it basically boils down to two key factors: "the unmedicated patients were more likely to be more resilient patients with better prognostic potential, better developmental achievements, and more internal resources" as well as, here's number two, self-esteem. Internal resources and self-esteem can be nebulous terms and I wouldn't even begin to guess at how a clinician can apply them to a patient. Nonetheless, they are the classic you know 'em when you see 'ems. Developmental achievements would, I assume, relate to learning and language acquisition (did they graduate from high school? on time?).

Then the authors offer this:

"Recommendations regarding the use of medications at various phases of illness are often based on a risk-benefit analysis involving, as in many other areas of modern medicine, the probability of success rather than certainty. The current data identify a clear subgroup of schizophrenia patients not being treated, a number of whom experienced periods of recovery, with the data indicating that on average, those patients not on any medications at the 15-year follow-ups had significantly better current and previous global adjustment than those on antipsychotics. There also has been some indication that as our patient sample is getting older, there may be some tendency for improvement among schizophrenia patients. Our overall analysis indicates that many schizophrenia patients not on antipsychotic medications played some role themselves in the decision for them to stop taking medication and leave treatment at a relatively early phase of their posthospital course. Thus, most of the subgroup of schizophrenia patients not on any medications who were in a period of recovery at the 15-year follow-ups had been taken off or removed themselves from antipsychotic medications over 10 years earlier by the 2-year or 4.5-year follow-ups."

Although the study doesn't get into social service-y details such as housing and aftercare, the Vermont study mentioned above does (the study first came to my attention in Charles Barber's Comfortably Numb). I don't have access to the complete paper--thanks APA!--but there is an account of it in the American Psychological Association's Monitor from 2000. The basic story is that long after being released from the state hospital, about two-thirds of the patients were recovered, often without medication at all. Much of the credit for that is given to community integration.

I'm going to leave my assessment of the Harrow and Jobe paper at that for now. For me, it has a lot of personal significance. I have two relatively close friends who are diagnosed with schizophrenia. One currently sits in a psych unit, doped to the point of slurring her words, after her psychiatrist tried an "innovative" new medication regime with her and it had very bad outcomes. The other is a man in his 60s who's been on the injectable Haldol for two decades or more and often looks like a dead man walking. I'd like both of them to have better futures, no matter how they are won.

Posted by Philip Dawdy at May 21, 2008 01:19 AM

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Comments

I'm not too surprised.

I've never taken medications for BIP 1 - and not for a lack of prescriptions. I was just too afraid of them.

In addition to this, the only doctor I've ever trusted advised me not to take them. He said they'd mess me up even worst.

Well I certainly didn't need "worst" so I took his warning to heart. While it isn't always easy, few would peg me as a classic bipolar these days. (Though one can still tell something is off. I guess one always will.)

Now, I know there's people who're doing well on meds and I'm happy for them but I don't feel like I'm missing out by never having taken psychiatric medication.

On the contrary, when I read about the majority of those "in treatment" I feel like I've indeed been spared of worst.

Posted by: Amanda at May 21, 2008 03:31 AM

It is well known that in "third world countries" where there are no drug treatments available that most Psychosis are time limited & self remitting.

Sara xxx

Posted by: sara at May 21, 2008 03:32 AM

At the age of 17 I was diagnosed paranoid schizophrenic. I am now 40 years old . I don't take meds/drugs. I've gone for years at a time without a mental breakdown. The mental breakdowns I do have and can have are a direct result of psychiatric treatment and mistreatment.

I would like to say psychiatry is bullshit, but can't. Without it I would have no monthly government income cheque to pay the bills. That psychiatry created me/discovered my mental illness and put me in this lifelong dependant position is a self fulfilling prophecy of the witch doctors.

Posted by: mark p.s. at May 21, 2008 05:42 AM

"Would I have misperceived some of the humming as psychosis?".
The Last Psychiatrist

Misperceived and made.

Posted by: mark p.s. at May 21, 2008 06:23 AM

Wow -- I'd like to see this full study but honestly these conclusions don't surprise me and I wish they'd get hyped in the media the way other more pharma friendly conclusions do. Thanks so much for writing about it and bringing it to our attention. To me, it's indicative of the same old refrain -- medical professionals simply do not have a clue about withdrawal and when they see it they just freak out and re-medicate to the hilt in an ever increasing vicious cycle that leaves the poor patient with less and less chance of ever healing or stabilizing. I can highly recommend Beautiful Mind about John Nash as a book that unwittingly demonstrates this phenomenon. John Nash had some pretty nasty treatments including insulin therapy that puts you in a coma but the truth is his courses on medication were actually not prolonged and not multiple meds at high doses. The book goes into a lot of clinical detail about his treatment. He took himself off meds eventually and proceeded to make marked improvement, something the movie actually chose to distort in an egregious and unethical fashion. The author of the book herself never really drew the logical conclusions from what she was describing which was also too bad. But I for one attribute John Nash's eventual recovery to the fact he actually had minimal not maximal treatment with pharmaceuticals. The issue of resilience though and a support group of loving caretakers is an important aspect too.

Posted by: Sara at May 21, 2008 07:46 AM

Hi Philip,
Have you come accross any similar studies for bp?
Joy

Posted by: Joy at May 21, 2008 08:19 AM

Amazing!
Shows that the easy way doesn't get you very far.

Posted by: Erik at May 21, 2008 08:19 AM

There is the key, the self-esteem, and internal self-resources, meaning I think if a person has internal self-determination, and people around them who support that--is what makes this outcome work. I completely agree with how the psychiatrists only see extreme cases, and in a very enclosed environment --hospitals.

If they were to see people successfully off medication (or even on for that matter)living full and decent lives they might think about things (speaking from my own life now) differently--like when a psych told my daughter at age 19 that she was SZ and "have no hope, poor prognosis".

What does that do to a person's internal flame and self-esteem?

That was the one statement the doc made that send me straight to court and gave her the freedom he was so willing to just throw away, into an institution, and won.

Now she is doing everything he said she couldn't and more.

She has started to build esteem back up by what we call simple chores. Laundry. But the smiling face after she (had to re-learn the task)succeeded spoke volumes.

Just yesterday, I took it up a notch, and she went to one of her favorite places she has not wanted to go to in over a year. A LIBRARY.As a previous 4.0GPA honor society reader--this was a great thing.

It takes a model of care that does not exist (if it does it's rare)in America.

I am personally pulling double duty having staff support her and me taking her out into the community to get her life back.

It is a slow process, and I do feel with time,she will keep proving them wrong and we've had a few talks about this: she has got to fight for it.

I can't; I can support and do what I can as a mom, but in the end it will be her own self-determination that will (I'm certain of this) move her off meds and back into a world where she last knew it at age 17. Now at 20, she has a long life ahead of her, and I hope she wins this battle. For the first time since being mis-diagnosed childhood bipolar, she is only on ONE medication. That right there is a victory worth counting.

I have since been back to mental health court and showed her photo to the attorneys on all "sides"; and they were so excited to see it. They also never see patients outside of extreme situations. Everyone needs hope.

Thanks for writing this article Philip.

Posted by: Stephany at May 21, 2008 09:58 AM

Joy,
the study includes "other psychotic disorders" which according to Bob Whitaker (author of Mad in America) who I talked to about this study includes bipolars. His interpretation of the study (and he also spoke with the authors of the study) is that the results are similar for bipolar patients.

Posted by: Gianna at May 21, 2008 11:07 AM

So, what this is saying, in fact, is that the majority of sufferers of schizophrenia can manage ok without the meds once they are stable for a while? Like they now say for depression?

Weird that there seems to be so much more knowledge out there on depression when schizophrenia is arguably on average more disabling... they don't seem to know much about it do they.

And those who are taking the pills non-stop are doing so because they continually end up in hospital either because stopping their pills brought the psychosis back OR it never went away in the first place?

Interesting: anti-psychotics really suck, so I'd imagine anyone who has been well for a long time would try to discontinue, with or without medical advice, once they'd been symptom free for a while... and if they are successful, they can stay off them. Conclusion: helping ensure that social outcomes for schizophrenics are good would improve prognosis considerably then, right?

I have friends who did remit after taking anti-psychotics but they are not thrilled at the thought of taking them forever. This sounds pretty positive!

BTW, before you all flame me, I do NOT LIKE anti-psychotics. I managed to persuade my doc to scale back and then eliminate mine on the basis that they were not compatible with being on a uni sports team and I had worked on cognitive-based techniques for dealing with the paranoia they were prescribed for. Oh, and university sports was very good for my health.

As a result of the cognitive techniques, during my last major depressive episode, paranoia was significantly less and I didn't need any anti-psychotics... ymmv and all that.

I do take lithium and an antid-depressant. These worry me far less. Sorry this is a bit disjointed. I have a cat trying to sit on the keyboard right now.

Posted by: DeeDee Ramona at May 21, 2008 03:08 PM

"It is well known that in "third world countries"* where there are no drug treatments available that most Psychosis are time limited & self remitting."

Another stupid remark of STUPID SARA.

This is WHO's in 1992.
*The world is no longer "bipolar". There's no room for this taxonomy.
Even in 1992 "first, second and third world" is...

LOL

Come on!
Is there anybody here who has not had an disagreement with Sara?

Posted by: Ana at May 21, 2008 03:35 PM

People like myself who are prone to relapses of 'psychotic episodes' regardless of a medication regimen often end up questioning the wisdom of medication, and the wisdom of the medical community in general.

While I don't fall in the group of people who eschew medication completely, I've found anti-psychotics to be the least useful, and the most damaging to quality of life. If episodes and relapses aren't being prevented, and side effects run rampant, it's obvious there are better choices.

Posted by: ok cu at May 21, 2008 03:49 PM

Ana, I'd like you to be sure you know which Sara you are referring to. There are two of us posting here. There is Sara xxx and Sara. Please be sure you know which one of us you are referring to. In any case I'm not at all sure you should be calling anyone names.

Posted by: Sara at May 21, 2008 05:16 PM

This is not a double-blind controlled study. It's a patient retrospective. And, as such, it's not really scientific. If you are dysfunctional and schizophrenic, you will probably end up taking meds. If you are more functional, you may not have to. It's impossible to tease apart the degree to which the meds help or hurt patients' outcomes.

If a patient isn't taking meds and runs into trouble, that patient will likely start taking meds. Is it really that surprising, then, that the patients who aren't taking meds tend to be doing well?

Posted by: Simon at May 21, 2008 05:41 PM

Sara,
Sometimes we do have to claim:

A rose, is a rose is a rose...

Posted by: Ana at May 21, 2008 06:03 PM

Simon have you ever been diagnosed schizophrenic?

I have, and let me tell you, all everyone says is take the medicines. For someone diagnosed schizophenic it is extreamly difficult not to take the psychiatric drugs and live. Why? Those in power who have diagnosed you, control your life. Control of if you get money from the government or not . The only housing you can afford will likely have a condition saying the residence must take their medicine or they will not be accepted and kicked out if non compliance is found out.

To include "scientific" with the psychiatric word schizophrenic is a joke.
Give me a scientific test for schizophrenia.

Those "schizophrenic" that are spiritually broken stay schizophrenic, those that fight have little to no support. "You are ill and need drugs!" is brainwashed into the supposed schizophrenic. With the second psychiatric trick of withdrawal from psychiatric drugs taken to be schizophrenic signs, it is a total and absolute shafting.

In the criminal system the accused is presumed innocent until proven guilty.
In psychiatry the accused is assumed guilty, and has no advocate for his/her defense. The psychiatric treatments make the patient comply and believe they are sick.
On Being Sane in Insane Places

Posted by: mark p.s. at May 21, 2008 07:51 PM

Besides the two factors of being better off to start with and having more self-esteem, I think that we should also consider that people who don't take the drugs have the advantage of not being chock-full of toxic drugs. Even if the drugs totally eliminate all the bad 'schizophrenic symptoms,' the 'side effects' like TD, enervation, or being very fat and/or diabetic sure can cramp a person's style.

Posted by: UnderTheThresher at May 21, 2008 11:20 PM

Important piece Phillip. You write: "I am not trying to make an argument that anyone should be off-meds or should be on-meds. I am not interested in having that fight. I'm also not going to fly off and declare the medical model of treating schizophrenia defunct (I've noted many times, however, that it does not work very well) and that schizophrenia doesn't exist. This isn't about that."

I have to disagree. This is exactly what it's about but then one of the cool things about your blog is watching your intellectually honest journey from the mainstream, "liberal, compassionate" view of "mental illness" to a somewhat different perspective partly due to your professional journalist habit of reporting the facts. I wonder where your opinion will be in a year. By the way for the person who asked, bipolar I is classified as a "psychotic disorder," so those of you so labeled should voluntarily submit to any restrictions of liberty and forced meds you recommend for your schizophrenic brothers and sisters at the bottom of the diagnostic caste system. If you don't who knows what you might do because of the "chemicals" in your brain. Whoah, what did those previous statements do to your self esteem? What harm is done to someone simply by labeling that person schizophrenic (or bipolar or SAD, etc)?

It irks me when folks labeled bipolar think that within the system of the biopsych model you are considered any less dangerous and insane than your schizophrenic counterparts.

Posted by: Sally at May 22, 2008 03:53 AM

"side effects' like TD, enervation, or being very fat and/or diabetic"
UnderTheThresher

These are side effects that are easy to people understand.
Unfortunately it's hard to explain side effects that are not "physical" and can't be demonstrated "scientifically" or "diagnosed" as a side effect.

Posted by: Ana at May 22, 2008 04:19 AM

mark p.s., unless you believe that a diagnosis of schizophrenia is not at all indicative of whether or not someone is actually schizophrenic, it is possible to study treatments scientifically. Science does not require failsafe measures, just appropriate controls. In this case, there are no controls, so one should be extremely cautious in applying the results to plans for treatment.

I have a friend who experienced a psychotic episode. She didn't take her meds. Then she experienced another, and now it will take her another year to graduate college, if she decides to come back at all. (Her family may not let her, given that they may not be in the financial situation to do so.) It's really kind of tragic. I realize that the side effects suck, and for some people, medication may not be necessary, but for other people, taking the meds is really the safer option.

Posted by: Simon at May 22, 2008 05:31 AM

Ana -- It appears you are attacking both of us. And honestly I don't know what points you are trying to make.

Posted by: Sara at May 22, 2008 07:14 AM

Hey, even *with meds* a psychotic episode is... exactly as bad as it sounds. It's going to interfere with life. It could take years to recover from. Medication is not a panacea. When you're having a psychotic episode, throwing massive doses of medication at it won't necessarily have the desired effect.

Also, The idea that medication is going to prevent relapses in someone prone to psychosis (whether a so-called schizophrenic, or 'Bi-polar Type 1'), is naive.

I agree with Sally, in that there is an imagined superiority, that the functioning of those with a bipolar diagnosis is much higher than those with schizophrenia. Having been diagnosed with both, well! The line between psychosis in extreme mania in bi-polar and psychosis in schizophrenia is so slim, the difference is negligible. The idea that one is somehow better than the other is laughable. The result of any psychotic episode can be truly crippling, although after experiencing enough of them, weathering the storm becomes less effort, more fluid.

The theme Mark P.S. touched on is an important one too, as someone with an extreme case is often cornered into a treatment they don't want because of family, fear tactics from doctors, draconian requirements of government agencies. But I'm sure none of this is news. Often you end up stuck taking a routine of pills for everyone but yourself, which is truly a shitty way to live.

"But for other people, taking the meds is really the safer option" Am I right?

Posted by: ok cu at May 22, 2008 09:29 AM

RE: Simon "to study treatments scientifically"
Can science distinguish between a person experiencing a schizophrenic hallucination or the person thinking.
My psychiatrist decided I was having schizophrenic hallucinations. I can't prove I was thinking.

Scientifically lobotomies should work well as a treatment for mental illness as they would destroy the part of the brain responsible for thinking or where schizophrenic hallucinations come from. If you believe in schizophrenic hallucinations.

Blaming your friends repeat psychotic episode on a lack of psychiatric drugs may be true. It may also have been the result of a hundred other things. We could all live in bubble balls so not to catch cold virus's. Would you like to be forced to live in a bubble ball? How about making it illegal to drink and smoke?

What caused her first psychotic episode, a lack of RISPERDAL® in her food?

Posted by: mark p.s. at May 22, 2008 06:28 PM

i've been doing really bad the last couple of years and was finally diagnosed about six months ago with bipolar disorder and paranoid schizophrenia. i'm currently on anti-depressants, mood stabilizers, and anti-psychotics. i've asked my psychiatrist almost everytime i go in if i can get better and ween myself off the medication at some point(being dependent on anything for a lifetime terrifies me) but she says i'll always have to be on them. reading this article has definitely given me some confidence about discontinuing the medication now that i've been stable and able to function socially again. from what i understand, these results could be more damaging the longer you've been on the medication right? if so, i want to try and stop taking the anti-psychotics now that i feel like i have the tools to keep myself from becoming so paranoid and anxious around people. if i get a lot worse again.....fine. but i dont want to stay on it for life just because i'm afraid of regressing to how i was.

Posted by: kyle at July 13, 2008 12:35 AM