Neuroleptic Drugs: Patient vs. Provider Perspective

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“A not uncommon paranoid delusion is that people are trying to poison them, particularly with their medicine.” –Steven M. Paul, M.D., Charlie Rose’s Brain Series 2: Schizophrenia

In January 2012, The Journal of Social Psychiatry and Psychiatric Epidemiology published a study which suggests that providers who prescribe neuroleptics are unaware of how impacted their patients are by the adverse effects of these drugs.

To compare patient and provider perceptions of these adverse effects, a group of 243 patients and their doctors completed the Liverpool University Neuroleptic Side Effect Rating Scale (LUNSERS). With this 51 question test, designed to ensure good practice, patients evaluated the presence and intensity of the effects of neuroleptics such as lethargy, loss of emotion, loss of sex drive, etc. Additionally, each patient’s doctor provided his or her perception of the presence and intensity of these adverse effects in their respective patient.

The data show that patients experienced significant adverse effects which altered their quality of their life, while doctors markedly underestimated how much their patients suffered. The study reads:

“The correlation between the total LUNSERS score reported by patients and doctors was very low…on average, patients perceived more adverse effects and with a significant higher distress than doctors.”

Initially, I was impressed by what I perceived to be the study’s attention to the quality of communication between patient and prescriber, and to the real harms caused by neuroleptic drugs. I thought this research helped to clarify the need for doctors to listen carefully and empathically to their patients, and to gather new resources with which they could support a patient’s wish to reduce or withdraw from neuroleptic drugs.

However, the conclusion reads:

 “…Doctors, patients and health care providers should increasingly consider patient and doctor perspectives as two complementary dimensions that may provide different insights in the evaluation of antipsychotic drugs. Integrating different points of view may represent a way to develop a better therapeutic alliance that might decrease the likelihood of nonadherence.”

Unfortunately, this conclusion brings only blindsiding redirection to the problem at hand. It lacks a curious attention to the fact that doctors are unaware of how harmed their patients are by the adverse effects of the neuroleptic drugs. It also fails to consider that providers might entertain new perspectives on their patients’ experiences, and ignores the need to find new ways of supporting the human experience of ‘psychosis’.

But what’s more alarming than the study’s biased and short-sighted analysis, is that it suggests providers’ perceptions of their patients’ internal experiences are “complementary”, and should be integrated with the patient’s own, actual experience. The holistic buzz words “integrate” and “complementary” are carefully chosen to denote popular imagines of well-being and connectedness. These words make palatable what could be more accurately described as an infiltration of the providers perceptions of how well the patient is doing on neuroleptics, in a stated effort to improve medication “adherence”. In other words, to coerce.

Why would a self-identified healer want to preserve and integrate their personal perceptions of the patient’s loss of sexual interest, loss of emotion, loss of energy, loss of cognitive function, etc., when the very quality of the patient’s suffering, particularly as it relates to the quiet and chronic adverse effects of psychotropic drugs, is itself such a singular experience?

I don’t know. But I do know that tending to the truth often calls for edgy and emotionally difficult conversation. For patients and providers alike, thinking critically about the adverse effects that come with the long-term use of psychiatric drugs can be an ego-dystonic endeavor. It is overwhelming to realize that our practice and livelihood could rest upon toxic soil. That what we thought we were doing to help, may in fact be causing more harm. This admission would call upon bio-psychiatry to practice that which it identifies as the hallmark of mental health: resiliency.

Now more than ever we need to reevaluate the benefits and harms that can come with psychiatric drugs–even when our consideration is met with disinterest, disbelief, or “integrated” opinions. We have the opportunity and responsibility to reassess the facts, to reconsider our beliefs, to investigate alternatives, and to change our course of action if we choose.  By staying committed to the principles of veracity, empowerment and care, we are sure to find great gifts. The power inherent in this kind of practice– exercising a marginalized voice or tending to our mistakes– is the very essence of healing.

References

Abadi, S., Joober, N., Levy, E., Malla, A.,  Pawliuk, A.,R. (2012). Medication-adherent first-episode psychosis patients also relapse: Why? The Canadian Journal of Psychiatry, 57, 78-84.

Gilden, J., Staring, A.B.P., van der Gaag, M., Mulder, C.L. (2011).  Does treatment adherence therapy reduce the expense of health care use in patients with psychotic disorder? Scizophrenia Research, 133, 47-53.

Barbui, C., Bianchini, M., Esposito, E., Mazzi, M.A., Nose, M., Ostuzzi, G., Tansells, M.(2012) Adverse Effects of Neuroleptic Drugs: Patient vs. Provider Perspective. Social Psychiatry and Psychiatric Epidemiology. 47, 157-164.

 

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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30 COMMENTS

  1. Vanessa,

    When it comes to the long-term use of neuroleptics (antipsychotics), the thought of being *poisoned* may be more truth than a “paranoid delusion” –

    http://www.madinamerica.com/2011/11/%ef%bb%bftimeline/

    In terms of *patient versus provider* perspective, there’s only *one* who deserves to make the final call… and it’s not the provider.

    It would be interesting to place some prominent shrinks on neuroleptics form the long-term, and document their “paranoid delusions” of being *poisoned*. Actually, I wouldn’t wish the experience on anyone, including a shrink.

    Great post.
    Thanks.

    Duane

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  2. Hi Vanessa,
    Thank you for writing this. From my perspective, it seems that there are two components to this:
    1. Doctors may not get the full picture of their patients’ experience with these medications. If one does not ask the pertient questions one might not hear the full story. This would result in the doctor underestimating the downsides of taking the medication.
    2. The doctor may have a different view of the benefits of the medications (and this may be true of other people in the person’s life). So the doctor may observe an improvement in one domain(let’s say reduced agitation) but the patient may not agree withis this observation.
    What do you think about that?
    Sandy

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    • Hi Sandy,

      Thanks for reading. Absolutely. In an open and working therapeutic relationship, there can be room for all perspectives, and all might be taken into consideration. It’s my understanding that this is part of what Open Dialogue seeks to accomplish? I’d be interested to hear more about what think, and how you’ve seen this value put into practice.

      One problem is that the “open” conversation usually happens alongside of a provider’s or family member’s goal of adherence to antipsychotic drugs. In this way shared perspectives quickly become coercive. I strongly believe that people need unbiased advocates, whose license or community standing and relationships are not on the line. I’d like to think that doctors or family members can play this role. But with such an investment in a particular, controlled outcome, and at the expense of a loss of emotion, diabetes, depression, and all the things that can make esteem, communication and self-advocacy so difficult for one who takes antipsychotics, I don’t think it’s a likely possibility. At least not until providers consider new paradigms of care, which, i see you do. I thank you for that.

      I’d be interested to hear more of your thoughts and experiences. I’m continuing to research and think about this problem and want to hear all perspectives.

      -Vanessa

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      • Hi, Sandy and Vanessa,

        I have to say, this study did not surprise me in the slightest, because it’s completely consistent with my own experience in the field.

        Sandy, I appreciate your giving the doctors the benefit of a doubt, but I think it’s important not to overlook another important reason doctors don’t get the full picture: many of them don’t want to see that picture if it conflicts with their own biases and training. I knew a 14-year-old whose hand shook 24-7 and who spent hours every day trying to reduce the tremor, and who was taking four drugs that caused involuntary movements, two of which specifically mentioned hand tremors as a side effect. I spoke to the doctor and said we had concerns about the side effects she was experiencing. His response: “We haven’t noticed any side effects.” They told her that her hand was shaking because she was nervous!

        They didn’t notice any side effects only because they didn’t want to see what was right in front of their faces. There was no protocol for side effect screening, and the staff at the facility seemed to have no idea what she was taking or what side effects to look for. Not only did they not ask the right questions, they specifically went out of their way NOT to ask any questions or make any observations that would lead to noticing side effects.

        And I don’t regard this as an outlier. It is almost impossible to get most psychiatrists to acknowledge that any adverse effect is happening, and even if they do, they tend minimize the effect or say it will go away. It seems to be a part of the culture of the psychiatric world: anything good that happens is attributed to the drug, anything bad that happens is attributed to the patient. Which is how we got 15+ years of denial that SSRIs cause suicidal thinking, despite Prozac being banned initially in Germany for suicidal thinking being evoked, just to give one example of many.

        I’d be interested in whether you see this overt denial that I’m talking about and if you have any sense of how to deal with this on a large-scale level. I think this is job one in changing the paradigm – being honest about what is really happening.

        —- Steve

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        • Steve,

          There is denial on the part of these docs, for sure.

          There is also ignorance. Many don’t know the signs of drug effects, including tardive dyskensia, believe it or not. Peter Breggin suggests that millions have developed condition worldwide, due to both denial and ignorance.

          By the way, could we please stop calling them “side effects?” They are “effects.”

          And neuroleptics are “drugs,” not “medications.”

          Duane

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        • Could not agree more. I was forcibly put on olazipine the next appointment was in a months time. Yep you can really monitor side effects, one month after you put a person on a medication by force. If I did not take it I faced automatic imprisonment. I was on it for PTSD, just to add to more insults!!!

          I gained 50 kg (at least 100 pounds) in that month. I had previously weighed only 65 kg!! I was now at 115kg, and had gone up 8 clothing sizes.

          When I complained about side effects, the social worker monitoring it all was with them, seeing the psychiatrist, and she had seen me every week and had known me for over 3 years in which my weight had never changed.

          The response, I can’t see any weight that you have put on and your clothes still fit you OK, so what is the problem??

          They then increased the dose, as I was clearly experiencing some paranoia and the medication could help with that.

          I have NEVER in 15 years since EVER told any doctor that I did not like a said medication or that I had any side effects. I knew full well it would only mean I would be kept on them and have the dosage increased.

          I have been free of all med’s for 9 months. And while I have lost 20 kg, I have a long long way to go. I gained a lot more after that initial jump.

          I do not know if they seriously believed what they were saying to me, but my medical notes of the time that I have recently obtained under FOI really makes me believe they seriously had not seen such a massive weight gain of almost double my weight, as they simply did not want to see it.

          If they seriously believed that telling me I had not gained any weight was going to convince me of it, it is beyond comprehension. How can anyone who doubles there weight within 2 months and go ups 10 clothes sizes, not think they have gained weight?? I would really have to be delusional not to think that.

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          • Belinda– thanks for this. It’s great that you’ve made your way off the antipsychotics. Your experience is consistent with what i’ve seen in the foster care system. Suddenly, in 2001, so many young women were put on these drugs to control their behavior. In just a month they gained weight, became lethargic and their blood sugar sky-rocketed. That’s no way to address trauma.

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      • I think one question is what one considers informed consent. I can not know what happens in other doctors’ offices but I think that at this point, I may be talking more about brain tissue loss and worse outcomes with neuroleptics that many of my colleagues.
        I get the sense that when a doctor in the Open Dialogue model brings up medications, he or she might be questioned by colleagues who may not think it is an imperative. In this way, the patient and the family have the opportunity to hear multiple sides. However, the challenge to drug treatment is likely to be stronger in Tornio than in the US because many clinicians here (not just M.D.’s) believe that drugs are critical to recovery. I think that this is what Vanessa is getting at when she states that family meetings could be coercive.
        I still believe that it is an overstatement to say that doctor’s have no concerns about side effects but at the same time, there is a Roshomon effect – we tend to see what we want to see and, as David Healy as written about extensively, there is a systematic discounting of side effects that might not fit our pre-conceived notions.
        Steve wrote:
        “anything good that happens is attributed to the drug, anything bad that happens is attributed to the patient.”
        I agree with this although I might say that anything bad that happens is attributed to the “underlying condition” and I wrote about this in one of my earlier blogs.

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        • You are right about the “underlying condition,” which in a way seems even worse than blaming the patient. At least if s/he was at fault, s/he could try to fix it. The “patient” (who is disempowered by even being called that) is the victim of the “underlying condition” and has no power to do anything about it. The doctor and the drug are working on the “underlying condition” which may “resist” their treatment or may yield. It’s as if the patient/recipient is a passive observer of the whole thing. No one ever seems interested in hearing what s/he experiences, and if s/he does speak up, his/her suffering is attributed to the “underlying condition” (see “nervousness” in my post above) and the drug and the doctor are absolved. The patient/recipient/victim has no control over anything, and can’t object to or even describe his/her reaction to treatment in any effective way.

          Delusion that they are being poisoned? Maybe it’s not such a delusion after all…

          Thanks for your reply, Sandy.

          —- Steve

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  3. This article makes good points, and the author seems like a kind and well-meaning person.

    But there is an underlying assumption here, and in all of this website. That assumption seems to be that we can accomplish significant change if we can just get the people who control the present mental “health” system to see the light.

    That isn’t going to happen. Why should it? No group of people gives up their power voluntarily. Psychiatrists profit both economically, and (perhaps more importantly) psychologically, from keeping things the way they are.

    Even though I realize that it will not be easy, to say the least, we won’t see real change until we take away the power, both legal and cultural, from the psychiatric profession.

    At bottom, that power is based on what is essentially a religious faith in psychiatry. People believe in the “miracles” of psychiatry in spite of the complete lack of factual basis for these beliefs. Doesn’t sound easy to break that delusional faith, does it? No, it won’t be. But we have to try.

    The fact is that there are a number of pressure points where those of us who want something better than a kinder, gentler, and still destructive psychiatric cult can exert some influence.

    I will write more later. But in the meantime, I hope those of us who really want to change things, both people like me who have suffered at the hands of the Church of Psychiatry and others, will start discussing strategy from the perspective of taking away psychiatry’s power.

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    • Ted,

      I’ve made it clear that I think we need federal legislation that puts an *end* to forced treatment without due process of law. IMO, this is *non-negotiable*.

      There is a record of my comments on MIA for months. I’m not sure who you’re talking about on this post with your comment (because only Vanessa, Steve and I have left comments).

      Duane

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      • Duane, I wasn’t referring to any particular person, just the general tone of the website. It’s fine to talk about alternatives, for example, and I think certain approaches, like Soteria Houses, have the potential of doing a lot to remove some of the perception that standard psychiatry has anything helpful to offer.

        But we can propose anything we want, and it will be blocked by organized psychiatry as it is now. As long as psychiatry has this power, very little can be accomplished.

        I’m not saying that it will be easy, and I have no magic formula. It won’t be easy, but it will be necessary. And what disappoints me about MIA, even though I certainly think it is a good development, is that there is very little discussion of political strategy. But the problems we face are political.

        It would help a lot if there were more contributors who aren’t mental “health” professionals or Harvard academics. People who have actually experienced themselves the abuses of psychiatry have a different perspective. These are not just interesting intellectual discussions for us. They involve our self respect, the lack of respect we receive in society, our very lives. It’s a much more urgent perspective for us, not an intellectual game.

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        • Ted,

          When you’re speaking of ‘us’, it sounds like you’re excluding me. I was put in the system at 16 and managed my way out only 9 months ago–17 years later. That’s half my life. Did you know that?

          There is more than one way to address the problem, and we’ll be drawn different approaches. If you have specific questions about what I’m doing to affect change in my community, or what my strategy is, I’m happy to fill you in.

          Vanessa

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          • Vanessa, thank you for talking about your own experiences at the hands of psychiatry. I am sorry if it seemed that I was attacking you. I think your article was valuable, and I think I said so.

            I can see where I need to be more careful in my comments, as I noticed that Duane also seemed to feel disrespected by me. That wasn’t intended.

            Just the same, I am not walking back my comment about the necessity of fighting psychiatry politically. Articles like yours are valuable. Organizing alternative ways of offering help to people in distress is valuable. Exposing the ways current practice hurts people is valuable.

            But the people who control the system now aren’t just going to step aside because we make good arguments. If anyone reading this thinks so, I would very much like to hear why.

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        • Ted,

          Having fought this political fight in Austin, with my friend and fellow Texan, John Breeding, I know *exactly* what you are saying, and I agree 100%.

          I’m concerned about the amount of time and effort being made a the state level, where groups are exhausting time and resources…

          There is a lack of focus at the federal level, which, IMO is where we need to focus – like a laser-beam.

          Forced psychiatric treatment is a Constitutional issue, and we need to move *beyond* pleading with state legislators, and begin to *demand* action by Congress, with a federal law that will protect the *people* from forced psychiatric treatment, and the states from the financial burden, and more importantly the harm caused to foster care and Medicaid kids.

          I apologize for the redundancy (this has been posted numerous times on MiA), this is a vision on how we can get this done –

          http://discoverandrecover.wordpress.com/mental-health-freedom-and-recovery-act/

          IMO, there appears to be a lack of committment, and no sense of urgency. In other words, I agree with you, Ted – 100 percent.

          Thanks for the passion.

          Duane

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          • Duane, thanks. Would you like to discuss strategy with me (and anyone else who wants to) off the list? My regular email is [email protected].

            I also find myself repeating myself, since I think just reacting to articles isn’t quite the best way to getting a discussion going. So I will look forward to hearing from you and others.

            HMMMMM….or should I start a new thread in the “forum” section of MIA?

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          • I think BOTH approaches have to be done simultaniously. The simple fact is the whole reason psychiatry is a religion is because the community believes in it. Very few people actually experience forced treatment in comparison to those who voluntarily accept it. And I was one who voluntaried for many many years before it was forced onto me. And then it was brief and I agreed again. I had nothing else to believe. The few things I heard that questioned it were blamed on underlying brain diseases. You could outlaw forced psychiatry today, 99.9% of people would still be on medications and still be in hospitals and the like. It might mean that people are treated slightly more humanely, rather than force the drugs into you via an injection they would simply con you into them, but the results would be the same.

            Until people are taught to critical examine the truth about psychiatry and what we know. Until people are given real and valuable alternatives, that are standard and not rare and isolated instances, until people are given real options to address their emotional pain and suffering from a variety of different perspectives, nothing will change.

            And even getting rid of psychiatrists would do very little. We know that MOST psychotropic medications are not prescribed by psychiatrists at all, and the rest of the community and ALL other doctors are more than happy to support those people, and more than happy to keep piling on the pills.

            for some that have been on med’s on decades, the withdrawl effects, no matter how low the taper, may simply not be possible, or it may take a decade or more to taper people off. We have to acknowledge these people.

            I feel that one of the primary reasons people say they have done well with drugs is that they have never been offered anything else and that we all go through periods of being well and so it is very easy to say the drugs created that period fo wellness and will fix me again. How often do we hear the drug stopped workings, so I need to find another one!!! If they knew the reality of psychosis or anything else it is that they go in waves and ALL people experience periods of wellness and periods of unwellness. But they need to believe the drug did it and the media convinces them of that – even in countries without any direct to consumer drug company adverising.

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    • Usually cheap and easy (or easier) explains stupid and harmful, but permanently disabling people, especially young people, on drugs defies common sense and is not cheap and easy as it presents more problems than solutions. Been my experience that psyciatrists don’t talk to patients. They talk at them. You’re dealing with authority for which you risk consequences for questioning. How these people ever learn anything about those they allege to treat a mystery to me. I also don’t think psychiatrists are predisposed to being good observers or original thinkers. They too are going along with the prescribing pack and believing what they are told.

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    • We want to make this site, moving forward, a place that people will look to for what is actually happening, what is being done, to change things. Some of that comes, necessarily, in the form of conversation: about research, about ideas, about language, and that is a good thing to have happen here. I am exploring ways to cultivate active dialogues; between bloggers, and among bloggers and commenters, in an “open” way. But we also want to have reports, written and in video, of concrete things that are being done. The Vermont Soteria project is one example, and I hope to have a brilliant presentation that Steven Morgan made at the Vermont DMH conference last week up very soon.

      I anticipate that the pace of reporting and conversation about changes will accelerate, because there is much to talk about and much to follow; and I hope that this will be the place that people think of to come follow it, if not become inspired and equipped to add to the momentum.

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  4. Vanessa, thanks for contributing this excellent blog post! I wasn’t familiar with the Barbui et al. (2012) article and the findings and their interpretation by the authors are as striking as they are unsurprising. The commentators above have made some excellent points and I agree with the notion that what patients experience as adverse effects may be seen by their prescribers as (a) “side effects” that may be disregarded when desirable “therapeutic effects” are present, or (b) symptoms of the mental disorder itself. The authors’ failure to see the forest for the trees in making sense of their findings is unfortunate, even pathetic.

    The Barbui et al. (2012) study reminds me of this article: http://bjp.rcpsych.org/content/197/6/441.full.pdf+html. The authors found that psychiatrists were less more likely to recommend “watchful waiting” than antidepressant medication for depression, and were more likely to recommend an oral than injected antipsychotic for schizophrenia, when they imagined themselves as the patient vs. treating a regular patient. Although the findings clearly showed that the “estimated unpleasantness” of the more invasive treatment option was a strong predictor of doctors’ recommendations, it apparently did not occur to the authors that their results suggested that doctors are hesitant to subject themselves to the adverse effects which they so readily subject their own patients.

    The last point I’d like to make is that this discussion of the doctor-patient discrepancy of adverse effects has a parallel in the treatment efficacy literature. As my favorite blogger 1boringoldman recently pointed out (http://1boringoldman.com/index.php/2012/09/14/rating-scales-or-kids/) , the apparent efficacy of antidepressant in children and adolescents exists only for doctor-rated depressive symptoms. On patient reported measures, antidepressants have efficacy equivalent to placebo. This discrepancy is routinely ignored and most drug trials simply omit patient rating scales; it is as if patient perceptions of an inherently subjective problem like depression are not valid. Amazing.

    Keep up the great work!

    Brett

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