The Place of Medication in a Recovery Oriented System of Care

Sandra Steingard, MD
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I was invited to present a work shop with Dan Fisher, MD PhD at the NAMI-VT annual meeting.  These are my comments.  They reflect my long term beliefs integrated with my reappraisal of practice in the past year.

First and foremost, we should be careful and judicious in how we use these drugs.  They have serious side effects and they are not as effective as is commonly thought.  There are people who seem to do better without them and we do not yet fully understand their long term impacts.

At the same time, they can be extremely helpful for people who are in acute distress and in some cases their benefits are dramatic and life saving.

Through my contacts with Robert Whitaker, I have connected to a number of people who have recovered after an experience of  psychosis and have either never used medications or stopped using them. I have found that it is very important to listen to them and to hear their stories.  The more I know of these stories the more I can talk to someone with a genuine spirit and hope about recovery.

This experience has led me to conclude that it is not helpful to people to focus on brain abnormalities but to talk about the brain in distress (I have been influenced by Dan  Fisher, Corrina West, among others).

At the same time, I think it is important to avoid blame.  We all need to be humble about our understanding of psychosis and I believe it is probably different for different people.   There seems to be a tendency to judge others when treatment outcome is not good : and this can go in all directions – the medications cause the problem or the lack of medications cause the problem, the doctor was bad, the family environment was bad, there was poverty, trauma. I do not think we have enough data to do this and I don’t think the focus on blame is helpful. One thing that attracts me to the study of Open Dialogue is that it seems to be about understanding the current experience without assigning blame or cause.

Be wary of how our personal biases lead us to interpret what we observe:

People relapse when they are on or off medications. In any given individual it is hard to know what actually caused the relapse and there may be social factors that get overlooked when the greatest emphasis is on medication compliance.

The bias for those who have confidence in the overall efficacy of medications is to believe that when someone does well it is the result of the medication and when someone does not do well it is the result of the underlying illness.

Many years ago, I conducted a small study of people who were admitted to a hospital because they had experienced an increase in psychotic symptoms. The people in the study had all been taking neuroleptics prior to the hospital admission. The common practice was to increase the dose of these medications. Most people improved and would be discharged on a higher dose of medication. The assumption was that they got better because of the medication change. In this double-blind study, some people received an increased dose of medications and others remained on the same dose they had been taking prior to admission. We found that at 10 days, most people felt better regardless of whether or not their dose was increased (Steingard S, et al. Journal of Clinical Psychiatry 1994; 55 :90 470-472.). This small study suggested that the common practice of increasing the dose of medication was not necessary. It also demonstrates how one’s bias can lead one to form an incorrect conclusion.

As with anything in medicine, the basic tenant when recommending treatment is informed consent. I believe I need to have an honest and make a decision with each person about the best approach to treatment.

  1. It is not controversial to say that these drugs can cause tardive dyskinesia, weight gain diabetes, hypertension.
  2. We need to include a discussion of possible brain loss and worse or at least unclear outcomes for those who remain on these drugs over many years.

I have tracked my practice for the past year.  I hope that by doing this, I will be less likely to be influenced by the dramatic events that might tend to have a disproportionate impact on my thinking (the person who comes off medications completely and does well or the person who gets much more distressed after having done well for many years). I hope that I can collect enough data to be able to make a contribution to our understanding of neuroleptic taper.

My best guess is that, as with many other treatments, there is a variability of response that reflects the variability of what we are treating. In our current first episode study, I am struck by the extent to which psychosis occurs in the context of substance use and social dysfunction. We have individuals who do well when we are successful in persuading them to stop using substances  and when we get them housed.

We need to offer people choice. This is such a values laden discussion that I find it hard to make group recommendations. Relapse for one person may not be as hazardous as relapse for another.  Therefore the way a person evaluates the various risks and benefits of treatment will be different.  We treat an individual not a risk and in only exceptional circumstances should someone other than the individual choose which risk she wants in her life.

We need to talk about a multitude of ways to improve health –

  1. Eating well, exercising, getting adequate sleep.
  2. Cannabis, alcohol, and other drugs can be destructive to a person’s well being; we need to encourage abstinence and give a person the tools to remain abstinent.
  3. Various forms of psychotherapy are often helpful and they need to be available, recommended, and encouraged.
  4. Vocational program and peer recovery involvement is helpful.
  5. We need to help people who are homeless get off the street and into safe housing.

It has always been clear to me that my role as the person who prescribes medications is and should remain a small part of a person’s treatment and recovery and this belief has not changed.

79 COMMENTS

    • “This experienced has led me to conclude that it is not helpful to people to focus on brain abnormalities but to talk about the brain in distress”

      I was a PERSON in distress. Not a ‘brain’. And nobody in psychiatry is in a position to be speaking matter-of-factly about ‘brain abnormalities’, if you were, we’d all be going to neurologists and the pathetic label bible the DSM would be pulped.

      • We all need love and caring, and emotional hurt. We have all been hurt. If we’re crazy, what about the guys manufacturing weapons and starting wars? What about those who are polluting and destroying the planet for profit? What about the people who creating, exploiting and perpetuating human suffering (like the people running the institutions of this society, including psychiatry?) The term “mental illness” has no scientific or medical validity. It’s just another way of categorizing some people as less than fully human. These comments are in response to various parts of your article; forgive the caps. THERE ARE NO “SIDE” EFFECTS, JUST EFFECTS. PETER BREGGIN SAYS IN “TOXIC PSYCHIATRY” THAT THE INTENDED EFFECT OF PSYCHIATRIC DRUGS IS TO DISABLE NORMAL BRAIN FUNCTION.
        FOR PEOPLE IN “ACUTE DISTRESS,” ALL THE DRUGS DO IS TO SUPPRESS THE FEELINGS. WHEN A PERSON IS IN “ACUTE DISTRESS” THE PERSON’S FEELINGS ARE INTENSE; THIS IS AN OPPORTUNITY FOR HEALING. THE RELEASE OF FEELINGS IS THE HEALING PROCESS. THE PERSON NEEDS SAFETY. IF THE PERSON IS SCARED, THEY DON’T NEED SOMEONE AROUND THEM WHO IS AFRAID OF THE CRISIS. IF THE PERSON IS SUICIDAL, THIS CAN BE DEALT WITH THROUGH EMOTIONAL SUPPORT.

        VERY FEW PEOPLE WHO ENCOUNTER PSYCHIATRY ARE THERE BECAUSE THEY EXPERIENCED “PSYCHOSIS.”
        BIOPSYCHIATRY HAS NEVER PROVED THAT “BRAIN ABNORMALITIES ARE RESPONSIBLE FOR PEOPLE’S DIFFICULTIES. THAT’S JUST THE APA’S LIES AND ATTEMPTS TO PROVE THAT PEOPLE’S DIFFICULTIES HAVE A PHYSICAL BASIS, SO THAT PSYCHIATRY CAN BE SEEN AS REAL SCIENCE OR REAL MEDICINE. THE REASON WE ALL HAVE DIFFICULTIES IS BECAUSE OF HOW WE’VE BEEN HURT. THE DIFFICULTIES OF PEOPLE WITH PSYCHIATRIC HURTS ARE DUE TO PSYCHIATRIC TREATMENT.
        PSYCHIATRIC TREATMENT IS TO BLAME; FAMILY PROBLEMS, POVERTY, TRAUMA, ARE ALL FACTORS. WHATEVER THE PERSON SAYS IS TO BE RESPECTED. YOUR JUDGMENT IS IRRELEVANT AND NOT NEEDED.
        PSYCHIATRIC DRUGS ARE EXTREMELY ADDICTIVE. WHEN PEOPLE STOP TAKING THEM TOO QUICKLY OR ALL AT ONCE, THEY OFTEN GO INTO WITHDRAWAL. PEOPLE WHO WORK IN THE SYSTEM CALL THIS “DECOMPENSATION.” THAT IS ANOTHER LIE.
        . ALL PSYCHIATRIC DRUGS DAMAGE THE BRAIN AND THE CENTRAL NERVOUS SYSTEM; THEY ARE ALL NEUROTOXINS.
        THERE IS NO SUCH THING AS INFORMED CONSENT IN THE PSYCHIATRIC SYSTEM. THERE IS ALSO NO SUCH THING AS CHOICE; YOU HAVE A CHOICE: DRUGS OR DRUGS.
        TARDIVE DYSKINESIA IS THE VISIBLE SIGN OF BRAIN DAMAGE.
        THE DAMAGE DONE BY PSYCHIATRIC DRUGS IS SO GREAT THAT IF THERE WERE ANY JUSTICE, EACH VICTIM WOULD GET MILLIONS OF DOLLARS, AND PSYCHIATRIC DRUGS WOULD BE OUTLAWED. IT IS CONFUSING, BECAUSE PEOPLE ARE DAMAGED TO VARYING DEGREES, AND AT VARYING RATES. DO YOU KNOW THAT RESEARCHERS HAVE ACTUALLY DEVELOPED DRUGS THAT CAN PASS THROUGH THE BLOOD-BRAIN BARRIER? SOME PEOPLE CALL IT “SOUL MURDER.” AND SOME OF THE BEST PEOPLE ARE BEING DESTROYED BY THESE DRUGS.
        AND YET, MOST PEOPLE WHO HAVE DIFFICULTIES CAUSED BY STREET DRUGS ARE NOW PUT ON PSYCHIATRIC DRUGS, WITH NO CHANCE OF EVER GETTING OFF THEM. I’M TOLD THAT PEOPLE ARE “DUALLY DIAGNOSED” FOR THE PURPOSE OF THIRD-PARTY PAYMENT.
        SHELTERS ENCOURAGE HOMELESS PEOPLE TO GO TO THE PSYCHIATRIC PROGRAMS, AND APPLY FOR SSI. BOARDING HOMES DO THE SAME, AND THEN BECOME THE PERSON’S PAYEE.

        • All caps is good. We need to yell because they have some kind of hearing problem. My diagnosis seems to cause deafness in MH workers. I’m thinking attending Bob’s talk at Central Vt Med Center tonight and carrying a sign saying “Paxil gave me toxic psychosis” and “seroquel gave me diabetes” and “lithium killed my friend” My diagnosis also seems to render me invisible.

  1. Yes, it is wonderful that you come with such humility and knowledge – thank you!
    But I’m surprised that you are suggesting [ point 2 ] that it is not yet incontravertable that the neuroleptics cause brain atrophy, swelling, loss, damage.[I shall go back over Anatomy of an Epidemic and get the references to this properly annotated and into my head and I expect to find that there is a strong body of evidence here too.]
    Because, once we can all accept that damage is caused, and that the drugs cover up but do not cure, then we can look for other means to alleviate the initial distress that the patient’client presents – on first asking for help, and on trying to get off the monster drugs. And in effect those other means seem to be obvious, having been used for mental relief for a very long time – I’m suggesting that we start to use opium again. Small tapering doses, that would relieve the initial desperation and allow the sufferers to glimpse freedom from their crazy heads, and thus know that freedom will be there, tapering off quickly to always ensure no dependence, but making it always possible to increase the dose again.
    Orthodoxy is an insidious brake on creative thinking. [ Or some such protocol, whatever…] Even the beautiful individuals involved in trying to get psychiatry out from under the corruption of big pharma, seem bedevilled by orthodoxy. The insights , for instance of the orthomolecular grouping seem to be carelessly ignored by my dear friends writing for this website.
    So, let’s try opium and niacin and the calming herbs- 3 possibilities just off the top of my head. There must be so many more that are not based on antihistamines or insecticides!

    My point is that there are lots of insights into how the brain may recover, and we need to bring our attention to this urgently because there are so many people so severely damaged already, let alone those continuing in the pipeline .
    And above all we need to see that there are no excuses for continuing with these drugs. Even those who are getting on all right with them can be assumed to be being damaged from the assault on the serotonin receptors all through the body.
    Lets stop including the neuroleptics in the concept ‘medication’.

  2. Sandy, another great diary. I wish your views were more widely shared. Unfortunately, there is not another psychiatrist in the involuntary mental health system in Vermont who believes, as you do, that we should be careful and judicious in how we use anitpsychotics and that they are not as effective as is commonly thought.

    In fact, “careful and judicious” is pretty much the opposite of how other psychiatrists use them. I hope that they are listening to you. I’m pretty sure that you have a better chance of reaching them than I do.

  3. “the family environment was bad, there was poverty, trauma.”

    Do you think “trauma” is all about what happens inside the brain, Sandra? Consider;

    “Most people think of trauma as a “mental” problem, even as a “brain disorder.” However, trauma is something that also happens in the body. We become scared stiff or we collapse, overwhelmed and defeated with helpless dread.

    In the aftermath of the Korean war, all poignancy was excised from the next generation of war trauma terminology. The term used here for combat trauma, operational exhaustion (resurrected as combat operational exhaustion for the Iraq war), certainly had nothing gritty or real in respect to the horrors of war.

    It was an objectified term, more applicable to a laptop computer of today when left on too long and needing a reboot.
    Finally, the current terminology, derived largely from the experience of the Vietnam war, is PTSD. As PTSD, the universal phenomenon of terror and paralysis – in which the nervous system has been strained to breaking point, leaving body, psyche and soul shattered – is now fully sanitized as a medical “disorder,” with its own convenient acronym, and serving the dispassionate nature of science.

    Where it was once aptly conveyed by terms like, fright paralysis and shell shock, it is now simply an objectified disorder, amenable to scientific categorization.” _Peter Levine.

    I guess as long as we are telling ourselves that “mental illness,” is all about the brain and the body plays no role, then we will fail to teach people how to “sense” their nervous systems feedback role in mental distress states, and how to develop better inner awareness & mind/body control?

    Should we be asking ourselves why is there a tendency to “objectify” medical terminology, so that the “visceral” impact of language, is missing from diagnostic descriptive observations? Does it aid the observer in remaining detached and “stable” in the face of disturbing emotionality?

    As for personal bias in our perceptions of ourselves & others, are we really “aware” of our own inner functioning, in our over-cognitive left-brain culture? Consider;

    “The left-brain style is to verbalize, to fall back on what is already known in order to preserve the sense of self mastery.” _ Roz Carroll.

    “It may be that the “mind-body split,” is in effect a right-left split, with left-brain activation overriding the right-brain assimilation and regulation of sub-cortically generated emotional states.” _ Roz Carroll.

    The Brains Motor Cortex & Unconscious Premovement: The brains activity began about 500 milliseconds before the person was aware of deciding to act. The conscious decision came far too late to be the cause of the action. It was as though consciousness was a mere afterthought – a way of ‘explaining to ourselves’ an action not evoked by consciousness. Peter Levine “In an Unspoken Voice.”

    Some more references to the body in states of “mental distress.”

    “Pathological dissociative detachment represents a bottom-line defensive state driven by fear-terror, in which the stressed individual copes by pervasively and diffusely disengaging attention “from both the outer and inner [italics added] worlds” (Allen et al., 1999, p. 164).

    I have suggested that the “inner world” is more so than cognitions, the realm of bodily processes, central
    components of emotional states (Schore, 1994). In line with the current shift from cold cognition to the primacy of bodily based affect, clinical research on dissociation is now focusing on “somatoform dissociation.”

    According to Nijenhuis (2000), somatoform dissociation is an outcome of early onset traumatization, expressed as a lack of integration of sensor motor experiences, reactions, and functions of the individual and his or her self-representation.

    Thus, “dissociatively detached individuals are not only detached from the environment, but also from the self—their body, their own actions, and their sense of identity”. Allan N Schore, “Affect Dysregulation & Disorders of the Self.”

    Makes one wonder about dissociatively detached individuals & medical diagnosis?

  4. The one thing meds do is create complications, It is very hard to determine what is causing a certain behavior. Biases about how to use the meds are stacked in favor of the treating psychiatrist. I have learned over time by observing my son how his new behavior was often not due to the meds. I couldn’t blame the meds on occasions when I realized that his home environment was stressful. for him But, the bias of the doctor was always to up the dose or try to convince us that a new drug was in order. The meds very quickly became part of the problem and prevented us initially from looking for other solutions. If meds were used for maximum a month is a crisis situation, they would not come to dominate and complicate, as they have done, the way forward

  5. “The bias for those who have confidence in the overall efficacy of medication is to believe that when someone does well it is the result of the medication and when somebody does not do well it is the result of the underlying illness.”

    Too true! I see from my case notes that when, unbeknown to staff, I had reached a point where I had significantly cut down my meds by secretly tapering, the staff interpreted my undeniable improvement as being due to my meds. But when I’d been taking the full dose as prescribed, my drowsy depression and ‘flattened affect’ was seen as symptoms of illness. When I managed to get off all meds, my so-called symptoms of illness never returned. I’m not saying everyone will be fine off meds, but I’m sure that mental health professionals who hold unswerving belief in the efficacy of medication are doing some of their patients far more harm than good.

  6. “We need to help people who are homeless get off the street and into safe housing.”

    Oh, yes, definitely.

    Homeless teens on a downward spiral who find their way into the psychiatric services may end up with a stigmatising diagnosis, and the effects of damaging treatment, to add to their problems. Diagnoses such as schizophrenia or personality disorder are often used to describe what are really reactions to ongoing traumatic experiences, such as homelessness often preceded by the trauma of childhood abuse.

    My work for a mental health charity includes supporting people whose post traumatic stress disorder has been compounded, if not solely caused, by their experiences of psychiatric services. I think that teenagers who feel it’s safer to trade their bed in a psychiatric unit for a bench in the park may not be entirely wrong, dreadful though that is.

  7. Sandra

    I have worked in community mental health for almost 20 years. I have been a critic of Biological Psychiatry since I read my first Peter Breggin book in 1991. I admire and support your participation on this website and while I don’t alway agree with your views I definitely see you as part of the solution in this battle over the understanding and treatment of those people labelled mentally ill.
    While some of the reforms and medication approaches you suggest might be helpful as a transition to a more humane treatment model, your overall approach seems to minimize the serious nature of the crisis we are in. Nothing short of a revolutionary change will be necessary to transform the total foothold that Biological Psychiatry has over our field of work at this time. Every suggestion of reform must be prefaced by such a call to arms for a total transformation of our system of care, otherwise we are deluding people about the nature of what we are up against. The pharmaceutical corporations, the APA, the major schools of medical training, and the government that supports and defends these institutions must be targeted. When you say that “… it is important to avoid blame” it misses the mark. It reminds me of the recent thread about “us vs them” in the response to Bob’s recent blog article. For many people this is a life and death struggle for survival in the face of massive overmedication and oppressive forms of treatment. We need to be very clear who our enemy is and at the same time “unite all who can be united.” Yes we must discuss reforms and design new approaches to recovery in light of the 30 years of people of being sold the “Big Lie” about the medication revolution; this includes new research about safe ways to taper off of these drugs. But we also must declare a state of emergency and challenge Biological Psychiatry from the top down; the Occupy APA was a very positive development grasping the urgency of this struggle.
    My question to you and others would be: how do you see us fighting on two fronts where the struggle for reform is part of an overall struggle for a revolutionary transformation?

  8. Sandra,

    You seemed to have missed my main point. Medications on some level will definitely have a role to play in the transition to a whole new way of treating people “after the revolution” as we use to say in the 60’s. After all, many people have bought into our culture of addictions and believe that some substance (be it legal or illegal) is the solution to their emotional problems and also many people have become physically and mentally dependent on them and will need to find safe ways (and perhaps very long term ways) to ween themselves away from this dependence. Biological Psychiatry has only taken advantage of the fact that we live in a very unjust and oppressive system, especially for those people that live in the under class. The stress of those conditions plus the other forms of abuse that affect all classes, such as sexual abuse, will ultimately lead people to seek treatment and most likely be evaluated by modern psychiatry; and most will be medicated. In a more equalitarian society stress would be dramatically reduced and many forms of abuse could be targeted and eventually eliminated thereby significantly reducing “brains In crisis.”
    Sandra, there are two types of denial. One is “we don’t have a problem with Biological Psychiatry” and the other is “we have a problem but it is not that serious.” The tone of your blog contribution for me tends to fall into the latter category. Your main thrust seems to present a view that we need to make a few reforms and avoid extreme viewpoints and approaches. To work in community mental health today is extremely difficult. I thought about writing a contribution to this blog titled “How to Work In Community Mental Health Without Losing Your Mind or Losing Your Job.”
    Once again I will reframe my question, in addition to your reform work and work with clients how are you also taking risks to challenge the status quo in your profession? Are you finding ways to unite with others in your profession to “make trouble” and target the leading institutions of Biological Psychiatry, thereby truly grasping the urgency of the current crisis.

  9. Sandra,

    I like to keep things simple.

    These are my thoughts on the subject:

    1) As a LAST RESORT
    2) With fully-informed consent
    3) In the smallest amounts
    4) For the absolute shortest period of time
    5) With a plan (from the outset) on withdrawal

    Duane
    Mad in America’s “simple”, black-and-white” thinker
    … Thank God there’s still a few of us left!

  10. Sandra,

    For whatever it’s worth, I don’t envy the spot you’re in…
    I would NEVER want to be in your situation, for all the money in the world.

    Which is precisely why I don’t find myself in your position.

    You may not like all of the things I have to say…
    Some of them are not always pretty, but then neither is conventional psychiatry.

    IMO, based upon its lack of any moral compass, for decades it has become what Pope John Paul, II called a “culture of death.”

    It is what is is.

    Duane

    • To clarify,

      He used the expression for much of what he saw in this world (not directly pointing to psychiatry per say), but to a larger culture.

      Sandra,

      As hard as it may be to believe, I see you as a moral person in an (largely, certainly culturaly) immoral profession.

      I’ve made a bunch of comments (and moved us off topic, unfortunately)… It’s someone elses turn for a while.

      Duane

  11. Sandra, I am confused about “relapse” occurring in the midst of medication.

    If the medication was working, wouldn’t “relapse” be more accurately called “poop-out”? Does “relapse” while medicated occur without “poop-out”?

    Calling such events “relapse” to me is too much like blaming the patient for the flaws of the drug.

    Not only that, the “poop-out” phenomenon, which exists across psychiatric drugs, suggests the medication is doing something untoward in the nervous system, such as excessive down-regulation, and needs to be examined as possibly presaging long-term adverse effects.

  12. Dear Sandra – I think you seriously miss my points:

    1] Big Pharma’s neuroleptics cause untold harm [ie are toxic]
    2] do no good but cover up symptoms.
    3] Are produced by an insidiously corrupt industry whose sytems and behaviour do enormous damage to our democracies.

    How do you justify using them?

    You have to reply that you have no alternatives because your hands are tied by the very industry that corrupts the FDA and lobbies governments tirelessly.

    But please do not say you do it because they work.

    Your patience is wonderful and I look forward to seeing where you will be in your thinking as this debate and movement rolls on over these next few years.

    PS Don’t forget Candace Pert and her ‘Molecules of Emotion’ which has uncovered so much of the petide receptor systems of which the brain is physically very much the smaller part. This explains the disastrous side effects of chronic neuroleptic use which assaults the immune system so radically.

  13. Niacin therapy has not yet been mentioned as a substitute for meds in the course of this discussion. Doctors Hoffer and Osmond provided lots of research and studies on megadoses of niacin in combination with equal amounts of vitamin C and other B vitamins. My experience observing my on niacin therapy is very positive. Unfortunately, I couldn’t conduct “pure research” (LOL) because my son was also on meds at the time. The good thing about niacin therapy is that it has a calming effect on the person and doesn’t lead to weight gain, diabetes or tardive dyskinesia. So, why isn’t the person in a crisis situation given niacin therapy? (We all know the answer, of course.) If meds aren’t that effective in the first place as is so often claimed, then where’s the harm in high dose vitamin supplementation? Critics will claim megadoses are dangerous and untested. There is plenty of research, and, as the website doctoryour.com shows
    “A new analysis of US poison control center annual report data indicates that there have, in fact, been no deaths whatsoever from vitamins . . . none at all, in the 27 years that such reports have been available.”
    Disclaimer: I have been on niacin therapy for six years and saw an immediate improvement in my own cognition after being on it a mere three days.

    • You obviously know this before I post it, but excess B complexs vitamins, being water soluable, get excreted in the urine and cannot build up and cause harm.

      I also use B complex, with extra niacin and folic acid. I am brighter, more aware, and have fewer periods of “difficulty” than when I took the Effexor or Zoloft. I won’t go anywhere near an antidepressant of any kind these days. B complex vitamins cost a whole lot less than the toxic drugs so you can’t beat that with a stick!

  14. I’d like to see the experiment repeated where people diagnosed with “schizophrenia” are split into three groups: 1 typical psychotics 2 atypical psychotics 3 placebo and outcomes compared. But then I would like to see an additional group added – a group given no pills but seeing a worker at the same intensity as the rest to see how things are going.

    In the original experiment those on the drugs had less positive symptoms but the ones on the placebo had better global functioning (ie their quality of life was better).

    I wouldn’t really want to do this as I believe the drugs cause more harm than good but it is an interesting thought.

  15. Dear Sandra,
    Thanks for your answer. I have learned not to trust just about any observation about how well a person is doing on meds or on niacin, because so much is in the eyes of the beholder, as you point out in your post. Here’s an anecdote that you may find amusing. My son was successfully weaned off his meds three and half years ago and six months later he was back in the hospital, albeit in a much better state than when he was first hospitalized ten years ago. I wanted to continue the vitamin supplements while he was in the hospital and the psychiatrist and nursing staff were kicking up a great fuss about this because they wanted him on meds only, so I visited my son every day and personally gave him the supplements. I got to the hospital one day and was told that my son had been taken off his supplements in order to see if his incontinence problem would clear up. A week later the doctor announced gleefully that the incontinence problem had cleared up so the decision to suspend the vitamins was the correct one. At this point looked him directly in the face and told him that my son had been on the supplements all along.

  16. Dr. Steingard,

    I applaud your efforts to question your own practice, but I will admit to feeling some discomfort reading your article.

    After volunteering in the psychology field for years as a paraprofessional I heard stories from long term clients of the psychiatric field that they felt uncared for or dehumanized by the system. I heard tales of terrible side effects, or downright mistreatment and hurt over what the hospitals did.

    Then horror of horrors I had the chance to experience that system from inside myself. A true unadulterated horror that was. You ask me to not place blame. I respect that. I suspect blame will not lead to change.

    What about responsibility? Who is responsible when we over-medicate, or act abusively to those in psychiatric hospitals? Indeed, so often they are under lock and key and can’t defend themselves. Not to mention that at least while the hospitalization is going on, it is reasonable to assume that the patient does not have the strength to protect themselves against those who profess to want to help.

    It feels “not quite good enough” for the doctors or representatives of that abusive system to say “well, we are doing our best”. I really want the doctors to admit that the system is severely broken.

    I say this not to place blame. I have met wonderful people that represented the psychiatric system both before and after my own unfortunate experience. I don’t want anyone to feel blame or shame. I ask for responsibility because without it we can’t start to make changes.

    So, Dr. Steingard, as you ask me not to blame you, or the doctors who were horribly irresponsible in how they medicated me. I also ask you to take full responsibility for not over-medicating, or not takeing away a person’s right to self determination without full cause, or act abusively to a person with some mental health challenges. Because I happen to know that these things happen every single day in psychiatric hospitals across the US. I will take my request one further and ask you to speak up if you see your colleagues mistreat a patient.

    And, while I do not want shame and blame, please excuse me if at least for a while I get angry when I see a psychiatrist or other psychiatric worker abuse their power.

    • Malene-
      Thank you for your comments.
      What I was considering in my comment is that often we do not have enough data to blame anyone. For instance, in the case of someone who does not improve it is often hard to know if this a result of poor treatment or the failure of a good treatment to help this individual?
      I am certainly not condoning abuse. I also would like to see some members of my profession who have profited from the drug companies take some responsibility for the their actions.

      • Dr. Steingard,

        Thank you for taking the time to reply. I want to first let you know that I do not believe that medications are always wrong for everyone. This is not my argument.

        My discomfort with your writing is very different. First, I notice that you seem to genuinely want to continue to improve your treatments and are open to listening to those of us who believe that reform is necessary and I want to stand up and applaud, cheer and thank you on my crying knees.

        Then I notice seemingly unconscious language that clearly shows the divide between you and me and I get uncomfortable.

        To me, if a treatment doesn’t help someone then the treatment was wrong – always and unequivocally. If that same treatment caused even one undesirable side effect, then the doctor failed in their duty to “first do no harm”. I suspect though that if a doctor were to really understand this then they would become frozen in fear of their prescription pad.

        Now, I am sorry to say this, but to me, doctors are humans. (ohh gasp, ohh horror, I know). Being humans doctors are prone to human emotions and reactions.

        What happens in the real world when a patient is difficult to deal with and resistant to the best efforts of the doctor to help? Come on, lets be honest here. How often does the doctor blame the patient for not improving? After all, the doctor did their best with all their tools. These tools were known as “good treatments”, it was just this one patient who didn’t improve – not the doctors fault and certainly not the treatments fault. Right?

        I see remnants of this when you refer to a “good treatment” that just didn’t help one patient. I hear the claim that it wasn’t the treatment’s fault, rather some other reason that this patient didn’t get better. In the real world Dr. Steingard, the patients gets blamed when they don’t improve. This opens the door to abusive attitudes by staff and doctors. That again opens the door to the horror I experienced in the hospital, and that I have heard many others describe.

        So, lets be clear. If the treatment didn’t work, then the treatment was wrong. Maybe under slightly different circumstances that treatment might have worked, but it was the wrong treatment for this person at this time. If the treatment caused unfortunate side effects then the doctor should have been more careful with the prescription. That is responsibility. In the cases when doctors prescribe medications to those on a psychiatric hold this responsibility become even more total. The patient literally does not have the right to say no to the medications that might be erroneously prescribed.

        This isn’t blame – it is responsibility. When that responsibility is fully realized then I suspect that doctors will become so careful of their prescription pads that other options must be explored in more detail.

        • Your standards are quite high – to only givetreatment that one knows with utter certainty will be both effective and devoid of any problems. This might be your choice and that of others but personally I would want to have an honest discussion with my doctor and make my own decisions about what risks I was willing to take.

          • Dr. Steingard,

            Funny, right after submitting above writing I started to think about the “what if’s” when a doctor does not know, and cannot know for certain if a treatment might work or not. Of course, I speak from my own perspective – while I have been suicidal before I have never been psychotic. When I was forcibly hospitalized I was kept longer than was medically necessary (I was unlucky enough to have insurance), I was force fed 2 anti psychotics, 3 anti seizure medications, an SSRI and a benzodiazepine. Three doctors have later told me that it was extremely excessive. I was also refused access to herbal supplements I knew worked – St. Johns wort, b-complex and others.

            I am obese and 4 of the medications I was forced to take had a potential to cause weight gain and diabetes. I maintained during my hospitalization that I needed NONE of them. Yet, it was a prerequisite for me to be discharged that I be “med compliant”. I had to get the lawyers involved to get discharged. I had insurance and frankly they were going to hold me as long as possible. It took the legal professional one brief conversation with the doctor and miracle of miracles, I went from very dangerous to discharged in seconds flat.

            Had the doctor discussed possible side effects, and had I been given a choice between someone to talk to or the medications I would not have chosen the medications. Someone to talk to would have been the responsible treatment. In fact, I asked for someone to talk to and was told that they did not have those resources. When it comes to general medical treatment then I believe it is the doctors responsibility to discuss all options, effects, risks and side effects. Then let me choose. I was not given that option. If that discussion has been honestly had then I can live with some risk. If that discussion has not been had, then how DARE the doctor take that risk on my behalf???? I cry foul. It is not your risk to assume. You will NOT live with the results.

            So, yes, you are right. When you come with your almighty prescription pad and you FORCE medications down my throat, then my standards will be extremely high, probably almost impossible for safety. And, if you misuse your power to prescribe then I hold you responsible – I might even blame you if you don’t get it right the first time. Yes, I blame the doctor who treated me in the hospital. I wish I could find him and let him have a piece of my mind. I would blame him, I would want to make him feel frozen in terror of ever prescribing again. Actually, I want his medical license revoked.

            Incidentally, I did whatever I needed to do to get out of the hell-hole called a hospital, and then I went of every single medication right away, and I did not need them.

            The much more important part of my writing above you did not address.

            Which is, when doctors do not assume responsibility for the treatments they offer or sometimes force on their patients, then they tend to blame it on something other than their treatment if a patient does not get better. It is not a good treatment that strangely doesn’t work. It is a bad treatment in this case. I hold that if a patient does not get better then the treatment is wrong, and it is the doctors responsibility to come up with something better.

            While I do not believe in shame and blame, I do believe in responsibility, and it is NEVER the patients responsibility or fault if a specific treatment doesn’t work. It is the doctors. Especially, ohh, especially, when and if you have the power to force feed me the toxins.

            I would love for you to read above post once more and hear your response to responsibility. Because that is much more important to me than actually arguing over whether or not the doctor could know if a treatment would work or not.

            Thanks for the time you are taking.

            Malene

    • As someone who saw things “from the other side of the locked door,” I agree with you wholeheartedly. You’ve expressed what I’ve been feeling the whole time I’ve been reading the blog and the responses. Thank yoiu for stating what you did and the questions you asked.

  17. Not only psychiatrists don’t take responsability when they put you on medication but they lie when things go wrong and they have overlooked your side effects. They lie to protect themselves and their colleagues,they lie to protect their jobs, they lie to tribunals when they want to have their own way.They also wright lies on your medical notes, thus misleading other doctors, and these notes and their lies follow you where ever you go. For some psychological reason other doctors don’t believe you, they believe all the lies on your notes. This is my experience in the British mental health service. This is a very sad and harmful state of affairs.

  18. Thanks for being part of those scientists that are constantly trying to distinguish what we know and what we assume, and trying to increase the former. Your word carries the credibility of the scientist that has no agenda, apart from following the evidence wherever it leads to.

    I would be interested to hear more from you about the psychotherapy component that you mentioned. Are there any “mind models” in individual psychology/psychotherapy that you find more useful or more well-founded (or more likely to pass the test of time)? There are many models of personality or mind or psychotherapy: big-five model, the DSM-IV personality disorders, the DSM-5 dimensional-based personality model, CBT, logotherapy, schema-therapy, RFT, psychoanalysis,…. Do you have a few “favorites” inside or outside that list?

    In the same line, are there any psychiatry/psychological books you frequently recommend to patients?

    • I am not an expert but I see much value in CBT. I am interested in Open Dialogue and will be getting training in this next year. I just read an interview with Gail Hornstein i which she says,”The great conundrum in psychiatry is that every single method that has been invented works for some people but doesn’t wrok for others… I say this for methods that I support as well as for methods that I don’t.” That captures my sentiment as well.
      Thank you for your gracious comments.

    • In ancient times the first doctors were priests first and doctors second. I believe it’s true that many maladies of the body and all psychological and emotional distress are spiritual problems. I am using spiritual on a much broader understanding and basis than religion. Ancient docotrs investigated the spiritual health of a person before they ever began poking or proding the body. I think that we in the modern world could take some good lessons from the ancients. Perhaps we should begin our journeys seeking better health with an excellent “priest” or “minister” before we ever approach any medical doctors.

        • Not great, no. Because, as far as I can see from the abstract at least, it tosses religion and spirituality together. Religion is to spirituality what bio-psychiatry is to something like Open Dialogue. Religion believes in God as a power located outside oneself, spirituality recognises this power inside oneself.

          Interestingly, I’ve often observed that people who believe they suffer from a brain disease — like in being hit by a strange thing, “mental illness”, from the outside — also tend to be more religiously than spiritually oriented, maybe not literally believing in an old man with a long, white beard sitting on a cloud, but close enough to. While those who believe in their experiences to be reactions to life, coming from themselves, from within, tend to have more interest in spirituality than in religion. I find both, the belief in one’s experiences to come from within, and spirituality utterly empowering. On the other hand, nothing seems to me to be more disempowering than a belief in brain diseases, as well as in some power controlling one’s life from the outside, and without oneself having much agency in one’s own life.

          • BTW, one of the most important questions my therapist asked me: “Do you think this is something that just happens to you, or do you think it’s you yourself doing it?” Guess what my answer was. And it amazes me, each time again, when I ask people this question, and their answer is: “It just happens to me!”

          • “Dialogue about spirituality is especially problematic for occupational therapists working with people with schizophrenia”

            That isn’t surprising. It WOULD be problematic when they lack knowledge and understanding, and thereby cannot fully engage a conversation when they have no idea what they’re talking about.

            “also tend to be more religiously than spiritually oriented, maybe not literally believing in an old man with a long, white beard sitting on a cloud, but close enough to.”

            I’ve had the old man (so frail, thin, weak) with white hair and beard *born within me*. It is symbolic and signifies (signify means a SIGN) a level of spiritual growth. The problem with so many people (religious, spiritual and otherwise) is that they do not know how to interpret and translate certain matters.

            And yes, I’ve had a voice on a cloud in a vision. The voice came forward FROM the cloud and it said, “let the peace come”. The voice was male – I am a female.

            (mind is heaven, body is earth. The vision takes place in “heaven” – MIND SPACE – it isn’t a manufacture of brain)

            Clouds are symbolic. Voice is true Holy Communion (communication).

            My religious and spiritual nature might be seen by some as evidence of some sort of brain or mind disease or disorder. Because I know better, it is easy to forgive but their ignorance remains quite difficult to endure.

            Science is it’s own language. Law is it’s own language. Psychiatry has it’s own language. Spirituality has it’s own language. Religion speaks it’s own language. SIGN language is it’s own language – in more ways than one!

            One gift of the Holy Spirit is the ability to speak in tongues (languages) and another gift is the ability to *interpret* tongues (languages). ANY language can be translated and interpreted in ANY other language.

            I bring psychiatry to the spiritual and the spiritual to psychiatry. And I bring the Word of The Living Book when a situation calls for it.

            god is a WORD – the most powerful word in all the universe. God is even more powerful than the word LOVE.

            god is a WORD and words can be defined and do have meaning.

            And Christ was the WORD in the flesh. What the heck does that mean?

            Let’s see if anyone knows.

      • I think it’s a misconception that pills cure anything (or save lives, or…) . Basically, there are 2 types of “pills”, or medical treatments. Those that strengthen the bodies own immune system, and those that destroy whatever has caused the disease (bacteria, etc.). In both cases the healing nevertheless is done by the body itself. Not by the treatment. The treatment only paves the way for the body to be able to heal itself. The problem with psych drugs is that they are designed to attack, suppress, and — especially with long-term use — destroy what is perceived to be the symptoms of a disease, but which in truth is the “immune system”.

        • I agree, Marion, but I think with psychiatric drugs the destruction of neurological integrity is an unintended consequence of pounding a symptom into submission. It’s part of medicine’s anosognosia that the destructive aspect is ignored while the benefit is exaggerated.

  19. Well, Dr. Steingard,

    It is not that I didn’t “like” your answers, it is that you didn’t answer my questions at all. You answered around my questions, and avoided them completely. Then you stopped the conversation.

    The more you spoke, the more hypocrisy I noticed. That was sad.

    I suppose you need to defend the system you represent. Even when it isn’t defensible.

    Malene