Pragmatic recommendations were put forward by a team of researchers who delved into the controversies and debates surrounding antipsychotic medications (APM).
David Roe and colleagues wrote a new open forum article in the journal Psychiatric Services to transform the research culture to center service users’ choices. To do this, they recommended a shift away from the focus on adherence and toward capturing diverse patterns of use employed by APM users to support their own recovery.
“Individuals with long-term psychosis often do not share whether or how they are using APM [antipsychotic medication] nor the strategies they may utilize as alternatives to APM. In combination with overly simplistic, dichotomized measures of adherence, this tendency has arguably led to the impoverishment of research on APM use,” they write.
There is a wide discrepancy between prescriber and user perspectives of antipsychotic medications (APM). It is generally established that between 40-60% of people who experience psychosis do not use APM as prescribed.
While proponents of APM emphasize the positive effects on traditional outcomes, such as reduction in utilization of medical service, emergency visits, symptoms, and rates of relapse and mortality, those on the other side of the debate emphasize the negative side effects and long-term neurotoxicity caused by APM.
Although treatment guidelines recommend antipsychotics as the frontline treatment for schizophrenia, there is a growing number of critical views espoused by clinicians. In addition, increased discussion around discontinuation and deprescribing practices demonstrates that researchers and clinicians also diverge in their views on APM.
In addition to the already existing controversy, emerging evidence challenges previously held assumptions about APM, note the research team. For instance, studies demonstrating that many people who discontinue APM and proceed to report a high quality of life contradict common beliefs that antipsychotics are universally beneficial and provide better long-term results. Moreover, such findings trouble claims that discontinuation of APM is invariably linked to negative outcomes.
Roe and colleagues cast light on the field’s myopic focus on antipsychotic adherence research. By viewing adherence as binary, researchers have overlooked the myriad and diverse ways that people understand psychosis and APM and how individuals strategically customize their recovery journeys.
“These developments in the spheres of both research and advocacy arguably push for a shift in focus of adherence research, from a narrow, dichotomous perspective (taking medications as prescribed versus not) to exploration of the range of ways people with psychosis choose to use medication,” the team explains.
“With this context in the foreground, we argue that it is incumbent upon the field, particularly among researchers actively focused on the study of medication use, adherence, and effectiveness, to fundamentally rethink the concept of adherence and its measurement.”
Clinician perspectives have driven adherence research. As a result, findings have failed to capture how APM users engage in alternative approaches such as extended or sporadic dosing, augment or substitute treatments with nontraditional drugs or medications, and other forms of nonadherence that support recovery goals.
Studies also feature sample selection bias, Roe and team assert, because of narrow eligibility criteria for research. In addition, findings are purported to represent the general population of people who experience psychosis but tend to include inpatient and outpatient samples.
Given the stark limitations to the existing approaches and paradigms in antipsychotic adherence research, Roe and colleagues recommend four specific, actional changes:
- “Shift to patterns of APM use.” Moving beyond the dichotomous (i.e., adherence or nonadherence) understanding of antipsychotic use can illuminate longer-term patterns and the different ways that people intentionally alter their prescribed regimen.
- “Support a bottom-up research approach.” Through this recommendation, Roe and colleagues emphasized the importance of APM user inclusion in all aspects of research on APM use patterns, writing:
“The field must ensure that future measures and tools are meaningfully coproduced and involve researchers and/or community members with personal experience of long-term antipsychotic use and, where applicable, discontinuation.”
Bottom-up research approaches also include utilizing qualitative inquiry, person-centered statistical techniques, and pointed efforts to explore the contexts and conditions surrounding APM augmentation and substitution strategies.
- “Address racial disparities in APM research.” The research team emphasized the representation of diverse APM users who may not be connected to traditional academic medical centers or outpatient clinics. They write:
“In light of the disproportionately high rates of schizophrenia among Black and Latinx individuals and the tendency to prescribe APM differently to Black and Latinx versus White service users, more research is especially needed on patterns of use among those who are Black, Indigenous, and people of color (BIPOC).”
- “Use [shared decision making] interventions and tools.” Roe and colleagues outlined a model for collaborative shared decision making that brings together “two equal experts, one with clinical training and one with lived experience…” In addition, at least two medication-related options ought to be raised alongside discussion of tapering and discontinuation. Ultimately, they highlight that shared decision-making must be congruent with the “patient’s goals, preferences, and values.”
Roe and team explain that their proposed reconceptualization, if taken seriously, carries the potential to transform the current culture of care:
“We believe a shift from studying adherence to a prescribed regimen to studying user-directed patterns of use will help move research past often-polarized positions and insufficient attention to service user perspectives and concerns.”
They conclude:
“This shift may help empower those with the most at stake—those prescribed APM—to make truly informed personalized choices among a range of evidence-based options emerging from APM users’ real-world patterns of use.”
****
Roe, D., Jones, N., Hasson-Ohayon, I., & Zisman-Ilani, Y. (2021). Conceptualization and Study of Antipsychotic Medication Use: From Adherence to Patterns of Use. Psychiatric Services (Open Forum). https://doi.org/10.1176/appi.ps.202100006 (Link)
“While proponents of APM emphasize the positive effects on traditional outcomes, such as reduction in utilization of medical service, emergency visits, symptoms, and rates of relapse and mortality.”
My experience was antipsychotics caused a great increase in utilization of medical services, emergency visits, symptoms, and I likely should have died, based on the staggering amounts of antipsychotics I was forced to take. At least I’ve read of others, given less of these drugs, who did die.
And I’d like to ask, given my medical research findings, that since the antipsychotics can create “psychosis” and “hallucinations” – the primary “positive” symptoms of “schizophrenia” – via anticholinergic toxidrome. And since they can also create the negative symptoms of “schizophrenia,” via neuroleptic induced deficit syndrome.
https://en.wikipedia.org/wiki/Toxidrome
https://en.wikipedia.org/wiki/Neuroleptic-induced_deficit_syndrome
What is the medical evidence that the psychologists, psychiatrists, and other mainstream doctors – who are “proponents” of forced treatment with the antipsychotics – have that this drug class actually causes a “reduction in utilization of medical service, emergency visits, symptoms, and rates of relapse and mortality?”
Since none of my – nor other psychopharmacological researchers’ findings, that I’m aware of – seem to agree with this supposed mainstream psychiatric / psychological / medical industries’ belief system.
“The field must ensure that future measures and tools are meaningfully coproduced and involve researchers and/or community members with personal experience of long-term antipsychotic use and, where applicable, discontinuation.”
I’d be one of those people. My psychiatrist eventually concluded my non-medically trained psychologist misdiagnosed me, and he did wean me off the drugs. And, in my medical research findings, I did find my psychologist did, in fact, misdiagnose me, even according to her DSM-IV-TR.
I happen to be white, but I understand it is frequently claimed that there is “the tendency to prescribe APM differently to Black and Latinx versus White service users.” So I have been sharing my medical research findings with the non-medically trained social workers and pastors in my area, who are blindly going out into the black community, likely trying to put black people on the antipsychotics.
Roe and colleagues “highlight that shared decision-making must be congruent with the ‘patient’s goals, preferences, and values.'”
I agree, and that statement is basically an admission – by “mental health professionals” – that forced treatment by any “mental health” worker should be made illegal. Which is a sentiment, with which I agree 100%.
Report comment
Again, why the “shared decision making?” I don’t SHARE decision making with my doctor or medical provider. S/he gives me information and advice and I MAKE THE DECISION. There is no sharing, it’s my call, every time. Why is this glaring violation of the rights and the self-respect of so-called “mental health consumers” not obvious to anyone looking at the situation? The very concept infantilizes the clients. And remember, we’re not talking about the client choosing to “share decision-making” with their doctor. We’re trying to convince the DOCTOR that s/he is not entitled to just do whatever the f*&k they want to the client without his/her approval. The argument is now, “Gosh, don’t you think you might CONSULT the client before YOU decide what you’re going to do to them?” This is totally ass-backwards in my world. I will never see a medical professional who thinks s/he gets to tell me what to do, and I’m glad that I have the privilege and the skills to carry out that intention. But many people don’t even see or understand what is being done here, let alone have the courage and ability, or even the legal right in many cases, to tell the doctor to go stick it where the sun don’t shine. That is not an acceptable situation!
Report comment
Steve, I hadn’t thought of it that way before, but of course you are right. The only person who makes the decision is you. The doctor informs and advises, you decide, period. Anything else is coercion and a violation of your human rights. The entire concept of shared decision making is based on the assumption that a professional gets to decide what you should do, to at least some extent. And any extent to which you are not in control of your decisions is totally unacceptable. Thanks for pointing out what should have been obvious to me. I’ll never think of “shared decision making” the same way again!
Report comment
I have had similar epiphanies many times in my life. When “everyone knows” that something is “accepted practice” and no one ever provides another perspective, sometimes some very weird or dangerous or just plain oppressive things seem “normal” and people who don’t adapt “abnormal.” Sometimes it’s very odd looking back on it that I’d ever accepted that viewpoint, that the obvious injustice or irrationality of it did not just smack me in the head before the scales fell from my eyes!
Report comment
But in the field of “mental health” we know what the pat answer to this is, and why involuntary treatment is allowed by law in many places, if only for a limited period of time.
Of course, as people in this community expected, those laws opened a Pandora’s Box of real and potential abuses.
We have a real dilemma here, in extreme cases. Whereas, in many cases it would be much wiser to let the patient (“client”) decide, there are a few that would not be able to do this.
In some cases, those extreme cases will involve violence that would justify physical restraint and arrest. However, in other cases, this may not be how it works out. A case that comes to mind was related by Stanton E. Samenow in one of his few lectures posted on Youtube. A crying baby is found on the ground outside an apartment building. (I forget if it was hurt) Locating the old lady who was “taking care” of the child, she asserted that the child wandered out to the balcony and fell off before she could stop it. But further investigation proved that in fact the woman “threw” the baby off the balcony in some sort of fit of anger. In asking such a person how they wished to be treated, she would maintain that there was absolutely nothing wrong with her. This is an extreme case, but they are not that uncommon. So this is a big dilemma in the field of mental health.
Report comment
I don’t see this so much as a dilemma. The simple expedient is to treat people who present as dangerous based only on the dangerousness of their behavior, not on any presumed “mental illness.” The truth is, one could say that any person committing a crime is on some level “crazy” because they are risking prison for some drama they want/need to act out. What is to distinguish someone who is willing to hold up a convenience store from the lady who tossed the baby out the window? The only real criterion that makes sense is to say that they did harm or threatened harm to others, and are therefore held in custody until that situation is resolved. “Mental illness” doesn’t have to enter into it at all. And even if we do decide we can “hold” someone for these subjective and legally vague and rhetorically nonsensical “illnesses,” it does not follow that they can/should be forced into “treatment” against their will. Their job is to demonstrate that they are no longer dangerous.
Of course, help of many kinds can be offered, and people who don’t find a way to alter their circumstances might be incarcerated for some period of time, but that’s the same for any kind of criminal behavior. I’m all for completely decoupling the idea of holding someone for being “a danger to self or others” and the idea of them needing “treatment” of some kind. There is simply no way to figure out who is/isn’t “mentally ill,” let alone who will “benefit from treatment.” That being the case, it seems beyond unethical to force “treatment” on someone based on these totally subjective labels, especially when it’s entirely possible that the “treatment” you’re forcing on them may kill them before their time!
Report comment
Well, yes. The example was the first one I thought of. And of course we don’t think of mental health interventions as happening in prisons, normally. But they do, and the psychopaths there (not all prisoners are psychopaths by any means!) will either accept therapy in the hopes they can get an early release, or refuse therapy. But in any case, they won’t make a decision that makes sense, just like their decision to commit a crime didn’t make sense. And that’s my only point; that’s the dilemma.
Forcing mental health treatment on someone never works for the person it is forced on. But it might “work” for society. So the real problem comes when the person gets arrested and is forced by society to live in prison. Would any mental health intervention actually work under those conditions? I have heard of various training programs working in prison, but it is not an appropriate setting for helping someone to be happy.
Report comment
You may not or may get to understand the mature of this thinking? Decision creating or decision making? Though the more appropriate question, How does research think, We, the people live in the clinic? What are the clinic boundaries in and outside the conscious/unconscious and all points inbetween?
Report comment
I agree, Steve. I also think the ubiquitousness of the term “non compliant” to describe psych patients who dare to think they have a say in the matter of what they ingest is a “tell” — it shows that these things are not in reality up for discussion.
Interesting post here:
https://www.crisisprevention.com/Blog/Managing-the-Noncompliant-Person
It contains this pearl of wisdom:
“The individual who is noncompliant feels more powerful. He or she begins to feel in control of the verbal interaction and in fact, is manipulating your reactions.’
Some synonyms for non compliant:
balky, contrary, contumacious,
defiant, disobedient, froward,
incompliant, insubordinate.
Is froward a word? Is that supposed to be forward?
This is what happens when I can’t fall asleep and start thinking about all the stuff that happened when I was “getting help”.
Report comment
“Froward” is a word. It means difficult or contrary or rebellious. It’s never used any more, but I know it from Lord of the Rings. “Oft faithful heart man have froward tongue.”
Report comment
Thanks, Steve!
Report comment
When I stopped taking “my medication” I became sick, so I did believe in the Diagnosis. But then I noticed that if I carefully cut “the medication” I didn’t become sick – but I suffered from a terrible Anxiety – that I had never suffered from before.
Over the years I was able to accommodate the Anxiety with trial and error techniques. After this I was mostly able to overcome the Anxiety. But the process took years.
But the Hospitalizations, Suicide Attempts, Disability and Psychiatric Dependency stopped near enough as soon as I took charge of matters myself.
In 2018 I visited one of the doctors who came in at the end of my treatment in the 1980s at Galway Southern Ireland. His opinion was, that the treatments had been the problem.
Report comment
Who Are The “Individuals With Long Term Psychosis”???
“…Individuals with long-term psychosis often do not share whether or how they are using APM [antipsychotic medication] nor the strategies they may utilize as alternatives to APM. In combination with overly simplistic, dichotomized measures of adherence, this tendency has arguably led to the impoverishment of research on APM use,” they write….”
If they are dealing with “Long Term Psychosis” – then they DON’T have “Long Term Psychosis”.
Report comment
This looks to me like another great example of thumb-twiddlng. Not that the people who write articles in the journal Psychiatric Services care what I think!
It’s not that I’m not curious about what people who are prescribed meds like this actually do with them. For that matter, I am also very interested in what people who are NOT prescribed these meds do with them! But the point is that here we are pushing up against the beginnings of a police state, and we are worried about how people take their meds?
The pro-tyranny folks want to figure out how to monitor everybody 24/7, then make not taking your meds an actual crime so they can arrest practically anyone they want at any time.
And what do the pro-social justice folks want? That’s not quite clear to me. Equal tyranny for all? It seems strange to me that they aren’t doubling down on the atrocious human rights violations we still see in the field of mental health (and now the field of public health?) and blowing the whistle on it! Who’s side are they on, anyway?
Report comment
Key words. “medications”, “ANTI-PSYCHOTIC”, “adherence”.
Correct words. “Bad drugs”, “who the fuck knows”, “force”
Report comment
I have found there is no “personal choice”. If I find prednisone to be the only drug that gives me some quality and then I am refused that drug, then everyone knows I do not have a choice. And that there is no shared decision making.
A bit like jumping out of the building when the floors beneath you are burning up.
Report comment
If you want to live, you do not use the anti-psychotic pill as prescribed. If you want to stay free of their definition of psychosis, you do not use the anti-psychotic pill as prescribed. If you want your imagination and intuition intact, you do not use their anti-psychotic pill as prescribed. If you want to talk to God (pray) and hear His voice, you do not use your anti-psychotic pill as prescribed. If you don’t want the side effects that disrupt your body and brain in all kinds of terrible ways, you don’t use your anti-psychotic pill as prescribed. If you don’t want your brain to shrink and be damaged, probably for the rest of your life, you don’t use the anti-psychotic pill as prescribed. Got it! Good! This is your brain on psych drugs—-not a fried egg but a scrambled egg mush! Thank you.
Report comment