Many individuals with schizophrenia often express a desire to reduce or even halt their antipsychotic medications, primarily due to the severe side effects associated with long-term use. However, a recent study reveals that these service users find little support from mental health professionals in this endeavor.
A new research article authored by Kickan Roed, Niels Buus, Julie Midtgaard, and colleagues, published in Qualitative Health Research, finds that there is reluctance among mental health staff to allow service users to make decisions regarding their own treatment. The findings were concerning: despite the increasing debate surrounding the balance between benefits and treatment-related side effects of long-term antipsychotic maintenance, many healthcare professionals remain hesitant to support tapering efforts.
This often leaves the difficult task of tapering medications to the service user alone. The authors write:
âOur findings indicated that there was reluctance among interdisciplinary mental health staff to let service users make decisions and limited possibilities for people with schizophrenia to have their request for tapering of their antipsychotic medication met by mental health staff.â
The aim of this study was to investigate the perspectives of mental health professionals on reducing the use of antipsychotic medications. The researchers also aimed to determine how mental health staff perceive their rights and responsibilities, as well as the rights and responsibilities of service users.
To achieve this goal, 39 mental health workers from two regions in Denmark were recruited for the study, and six focus groups were conducted between May and June of 2022. Participants included various mental health staff positions, with registered nurses (13) and nurse assistants (15) being the majority. Sixteen participants worked in community services, 13 in inpatient services, and 10 in outpatient services, with an average of 13 years of experience in the mental health field. During the focus group sessions, participants were presented with claims related to the use of antipsychotic drugs in individuals diagnosed with psychotic disorders, to create tension and stimulate discussion.
Three researchers carefully examined the transcripts and audio recordings of each focus group. They observed that mental health staff tended to hold one of three positions about service users tapering antipsychotic drugs and recorded the data around these three positions.
The authors identified the following three positions around the question of tapering antipsychotic drugs:
- âNo, patients will eventually realize that they need the medication.â
- âYes, but tapering means running a big risk of relapse in symptoms.â
- âYes, we need to welcome risks to support personal recovery.â
During the focus groups, some participants expressed more than one position, but staff members aligned mainly with one position. It is important to note that these positions were not tied to specific settings, professional experience, age, or gender.
Those participants who believed that patients would eventually realize their need for medication saw antipsychotic drugs as effective in reducing symptoms of psychosis. They compared these drugs to other drugs used to treat physical illnesses, such as insulin. They viewed schizophrenia as a chronic illness and believed that symptom remission indicated that antipsychotic drugs were working and should be continued. These participants tended to avoid discussing the adverse effects caused by antipsychotic drugs.
These participants relied heavily on the concepts of âcomplianceâ and âillness insight,â in which not taking antipsychotic drugs when prescribed was seen as non-compliance and evidence that the service user lacked insight into their condition. Tapering was viewed mainly as a negotiation tactic in which staff could eventually persuade the service user to take the full dose.
These participants often questioned the authenticity of service user preferences by, for example, dismissing requests for tapering as service users falling for a trend or acting on impulse. Mental health staff endorsing this position saw themselves as having the right to authorize patient wishes and the responsibility to protect society from psychotic service users. They viewed service users as ideally passively receiving the treatment offered.
Participants endorsing the position âYes, but tapering means running a big risk of relapse in symptomsâ regarded antipsychotic drugs as helpful in controlling symptoms and allowing for recovery from psychotic disorders. While this group viewed antipsychotics as an integral part of treatment, they also acknowledged that drugs were often overused as the cheaper treatment option and likely relied on so heavily as a way to discharge service users quickly.
These participants endorsed tapering as a good clinical practice to be instituted when service users were stable. While tapering was viewed positively in preventing overmedication and adverse drug effects, this group did not view service user preference as primarily important in this process.
This group expressed several concerns about tapering antipsychotic medications. These participants endorsed both the risk of relapse and the risk of drug abuse as reasons not to taper antipsychotic drugs. They believed tapering should only be attempted with service users who had not had multiple psychotic episodes and only during prolonged stable phases.
These mental health workers position themselves as well-informed professionals with the right to protect service users. This means service users are viewed as vulnerable people with the right to be protected from harm.
Participants endorsing the position âYes, we need to welcome risks to support personal recoveryâ viewed schizophrenia spectrum disorders as transient with symptoms that come and go. This group was in favor of tapering at the service userâs request as a way of upholding service user rights and honoring their preferences.
They also preferred to reevaluate service userâs prescriptions frequently as service users developed and learned coping strategies, to find the lowest amount of medication that could be used to manage symptoms.
This group typically reported discussing tapering with service users as part of a constant conversation about how prescribed drugs worked for them. They emphasized monitoring service user triggers, stressors, and other warning signs that may signify relapse throughout the tapering process. They also emphasized identifying effective coping strategies to help combat relapse.
Tapering was also viewed as beneficial to recovery, as service users were better able to connect and participate in recovery-oriented activities once they were no longer on high-dose antipsychotic medications.
These mental health workers positioned themselves as having limited knowledge, so they sought the experiential knowledge of the service users they worked with. They also viewed themselves, as a result of constant dialogue with service users, as sometimes knowing the service users better than the service users knew themselves. In their eyes, this gave them the right to speak for service users in decisions around medication and tapering.
There are several limitations to the current research. Participants were recruited exclusively from two Danish regions, severely limiting generalizability to other populations. The sample size is also small, limiting generalizability even within the two Danish regions where the research was conducted. The authors conclude:
âThe three distinctive positions identified in this article predominantly reflected biomedical discourse and, to a lesser extent, recovery-oriented discourse. Notably, all three positions reflected degrees of paternalism with a restricted stance toward mental health service usersâ autonomous choice and active involvement in treatment-related decision-making.â
Research has shown that antipsychotic drugs have many adverse long-term effects. Antipsychotic use is associated with early death, dementia, sexual dysfunction, and brain damage. It is also common to prescribe these drugs without informed consent.
Some studies suggest that tapering antipsychotic drugs can reduce the risk of psychotic symptoms. However, tapering is best done very slowly to avoid withdrawal symptoms and relapse.
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Roed, K., Buus, N., Nielsen, J., Christensen, P., & Midtgaard, J. (2023). Mental health Staffâs Perspectives on tapering of Antipsychotic Medication: a focus group study. Qualitative Health Research. https://doi.org/10.1177/10497323231195821Â (Link)
So, to me, when “no treatment” is decided on a willfull and informed manner it is A treatment.
As heuristics, as a rule of thumb, when there are multiple opinions, particulaly beliefs in medicine, that points strongly to there being little difference in outcomes between the proposed interventions.
Which in this case might not be true, but it is useful to considered it as that: a rule of thumb, that might not be relevant, even pernicious for an individual patient.
But on the aggregate it tells something more relevant.
The fact that beliefs can be grouped three ways tells me that at least 2 of the three, in different combinations, since they seem to correlate with more than 3 relevant, supporting, beliefs, are in fact not based in science, not on evidence based medicine, not on medical ethics, and particularly acute not on the LAW.
Apparently, from this review of the article, NONE of the practitioners in either grouping spoke of the LAW. They spoke of rights and obligations, but I bet they didn’t quote or understood the LEGAL argument supporting not their BELIEFS, but their PRACTICE.
Admitedly, reading the review I came out with the conclusion, perhaps false, that their beliefs guided their practice, which in fact is not a given.
And probably don’t know either how their rights and obligations beliefs interact or intersect with OTHER rights and obligations of service users and practitioners. Not as a lawyer would do, but how a Judge/jury would do, they seem to be faking being judges of the LAW.
That is, a legal “argument”: following the constituional precepts, the secondary laws, down to the operating manual for the institution where they work how does that provide rights and obligations that apply SPECIFICALLY to a given patient in a SPECIFIC situation?.
Sounds pedantic, but in fact, that’s what they are supposed to do because they learned that during their training or continued medical education, because it involves pondering, even transgreding RIGTHS and OBLIGATIONS of patients, service users, and practitioners. Even Judges, juries and related personnel and institutions ones…
Otherwise, at least they are working under uncertain legal precepts, ideas, beliefs and missconceptions. And probably outside the law, or even clearly patently against the law. In at least TWO out of THREE of the cases.
So they not only should know this stuff, they should master it. Or have a system in place or to go to, to be really educated on it, both patients AND practitioners. That will be lacking in current informed consent I bet.
But admitedly many practitioners will be guiding their practice based on superficial knowledge of precedent: there is or was a case and was decided thus. Without again considering the full LEGAL sphere applicable to this service user, like a judge/jury does, or is supposed to do when deciding a legal disagreeement.
So, even if using precendent when in disagreement, they might still be faking the Judge/jury thingy…
One size fits all in the legal arena seems to percolate from the sets of beliefs, which sounds ludicrous when people are so different and in different situations all the time.
So, sounds cultish to me.
“Some studies suggest that tapering antipsychotic drugs can reduce the risk of psychotic symptoms. However, tapering is best done very slowly to avoid withdrawal symptoms and relapse.” and apparently DEATH, see the ORIGINAL article reviewed in:
https://www.madinamerica.com/2023/09/what-the-radar-trial-tells-us-about-antipsychotic-reduction-and-discontinuation/
The review does not mention the increased, apparently TWICE risk of dying when tapering neuroleptics.
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Anti psychotic meds are the true drug crisis in America
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I feel there is a lot of information left out of this article. What is psychosis? What do the antipsychotics do? Temporary treatment and not temporary treatment is a treatmentâŚ
Talk more about schizophrenia, bipolar, drug induced psychosisâŚ.
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Hi Dolly!
“What is psychosis?” According to my medical records, and my former psychologist’s and psychiatrist’s belief system, all dreams are “psychosis.” But since we all dream, this is a pretty lame – not to mention societally meaningless – definition of the term “psychosis.”
“Talk more about schizophrenia, bipolar, drug induced psychosisâŚ.” Sure! I’ve been an independent psychopharmacology researcher for almost two decades now. I’d love to point out the problem regarding how the ADHD drugs and antidepressants can cause the “bipolar” symptoms, as Robert Whitaker so generously pointed out to all in his 2010 “Anatomy of an Epidemic.”
https://www.amazon.com/Anatomy-Epidemic-Bullets-Psychiatric-Astonishing-ebook/dp/B0036S4EGE
And I found the medical proof that anticholinergic drugs (including both the antidepressants and antipsychotics) polypharmacy can create the positive symptoms of “schizophrenia” – which includes both hallucinations and “psychosis” – via anticholinergic toxidrome, a medically known way to poison a person … way back in 2009.
https://en.wikipedia.org/wiki/Toxidrome
I think it took me until about 2015 (I do have a life outside my online psychopharmacological research work), to finally research into what “schizophrenia” actually was, and then look for how the antipsychotics might actually also create the “negative symptoms of schizophrenia.”
I don’t think it took me more than a few days to find the medical evidence that the antipsychotics / neuroleptics can also create the “negative symptoms of schizophrenia,” via neuroleptic induced deficit syndrome.
https://en.wikipedia.org/wiki/Neuroleptic-induced_deficit_syndrome
But, given my research findings, I couldn’t agree more that we must all “Talk more about” the medically known iatrogenic “schizophrenia, bipolar, drug induced psychosis” symptoms, that we all now know can be created with the psychiatric drugs.
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Reading this article is making my heart hammer & chest tighten from anger.
Labeled bipolar 1 in 2004, following the deadly DSM IV publication, I was saturated with Antipsychotics, always ‘supported’ by anti-convulsants, ‘mood stabilizers’, and benzos…every 24 hours, for 11 years.
My mental illness ‘symptoms’ were stress over money & the accompanying insomnia. My REAL problem was my good insurance….(but not for long-a little humour)
9 years later…having been titrated & ‘withdrawn’ by a CMO/VP for 2.5 years …& subsequently having 19 seizures over the next 3 years, MY medical/science-y ‘understanding’ of this topic is this-
Industry cost & liability containment, revenue-stream support, job security.
I was invisible in that equation.
MY (abridged) relevant damages in THAT phase of ‘engagement’ were TD in both eyes, a 2nd (!) Neuroleptic Malignant Syndrome ‘event’, anaphylaxis, and a pre-frontal, sub-cortical focal lesion presenting as Micrography. (There was more of course, but who has the bandwidth?)
That last one caused neuros and bigger specialists to wish me well, moving out of the exam room while I continued to ask questions, for HELP….waving the printed studies like Ho/Andreason, so they wouldn’t fear being ‘first’ in acknowledging the obvious…and hurt their career arc.
This article concludes…
“Research has shown that antipsychotic drugs have many adverse long-term effects. Antipsychotic use is associated with early death, dementia, sexual dysfunction, and brain damage. It is also common to prescribe these drugs without informed consent.”
….and WTF is “informed consent”?
/s
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AHA! FINAL PROOF!
Psychiatry is a pseudoscience drug racket
and social control mechanism.
Exactly what I have been saying all along!….
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more psychiatrists are spotty in their knowledge of antipsychotics than they like to believe. the modern consensus is that if you still feel bad a month into your doses, you likely won’t improve. I am lucky to have a psychiatrist who is educated on mixed disease and who should use what “era” of antipsychotics however I know multiple people who were stuck with bad matches for mf months. 3,4,5 months of not feeling right, being too tired to function, feeling unreal due to the severe numbness etc. and in all instances their drs were like “well, tapering would be dangerous etc etc,” never acknowledging there’s ways to taper and then replace directly with a new medicine, or admit them to a MAT or psych facility to make sure they stay physically in good health. psychosis care is in the dark ages. yes schizophrenia and severe psychosis deserve medication but we are by and large matching people with the wrong drugs and not listening to their concerns.
a nurse tagged me as “deviant” when I told her “I don’t need to use my inhaler but I have it in my house”
now imagine how a schizophrenic is treated when they say “my pali makes me too tired to work safely so I don’t take it as much as I should”
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In response to this article, I actually find the opposite to be true. Thereâs such a rush to reduce antipsychotics per âguidelines/regulationsâ that doctors and health care facility administrative staff are too quick to reduce these very important meds, sometimes without proper consent form the patient or family member. When a patient, family member, or psychiatrist most familiar with the patient is asked for their input regarding reduction, the usual response is a firm ânoâ and as a rehabilitation nurse and mother of an adult schizophrenic, I stand with them 100%. It would be cruel to force someone to suffer with their symptoms in the name of following regulations or guidelines. For people MISdiagnosed and taking antibiotics unnecessary, I agree that this should be stopped. But for those unfortunate ones with a true psychotic disorder, these meds are necessary to give them the best quality of life possible.
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I think it would be very interesting to further this by surveying providers own backgrounds ie hx of mental health treatment. Is it countertransference?
Or cross sectioning with socioeconomic status of provider/patient.
*I’m a provider and a person who has no plans of stopping my several medications.
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You don’t share your ‘title’ or degrees.
As my long relationship w/your industry informs me….If you’re a doctor, your suggestion is stupifying. If you are NOT a doctor, the ‘rules’ are slightly more relaxed…for career-building.
As a “provider”, I am staggered at your seemingly cavalier & naive reference to any transparency, even anonymously, by “providers” across your industry who need/want/seek and/or receive MH support.
The ugly, deformed truth is that the (your) industry that vigorously (P$A’s, ++) campaigns to persistently decry stigma (on MH diagnoses) of your CLIENT population, quickly, coldly-sometimes publicly/legally culls YOUR OWN MEMBERSHIP from the (ostensible) image of ‘absolute’, stable, rational human perfection of the industry’s OWN members….from surgeons to psychiatrists, and all points in-between.
The medical industry’s own publications have carefully, gingerly, uncomfortably begun to address this inconvenient truth…as liability concerns by employers (& insurers) don’t want THAT loss-of-trust by patients coupled with the alarming fatal medical diagnoses & treatment statistics, year after year (#3 cause of U.S. death). Crippling lawsuits, loss of confidence, oops sorry, revenue, unsalvageable branding.
During my 2.5 years being titrated/withdrawn off of thousands of doses of psychotropic drugs, I had an awareness of how novel & ‘off-the-grid’ my withdrawal process was (2013-2016).
The clinic chief transformed into the CMO/VP early in ‘our’ process. He had a very promising career in the balance. As the clinic chief, he had overseen a catastrophic, documented medical ‘mistake’ …that I parlayed into a ‘negotiating’ chip, to save my life.
We had a (faux) relaxed, ad hoc’ situation over the 2.5 years of withdrawal.
He occasionally shared ‘behind-the-curtain’ nuggets about other patients, staff, and himself.
Those moments left me quietly thunderstruck.
One of them was regarding his late nights at his (now) corporate offices…as medical and administrative associates would ‘wander’ in, stop by, or surreptitiously approach him…regarding their MH issues…OFF THE RECORD. Appointments would have been career killers.
My DENTIST (aware of my charted, prescription reporting) asked if I could arrange a ‘quick’ phone call, convo, email with this doc. He was ‘all-cash, upfront, no insurance record, please.’ My psych said he would ‘help’ him, no fee: a ‘professional courtesy’.
BTW, re: taking the drugs…in your case it may be an ‘informed choice’. For far too many, it’s not.
Good for you & good luck….further down the road.
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I find so many of these comments argumentative and distracting and that’s unfortunate. I wanted to thank you for writing this and for your studies. My son has been diagnosed with schizophrenia schizotypal bipolar autism …on and on for years with many hospital admissions. He lives in his own but I have to caregiver a lot for him to stay that way. He’s had many issues with meds TD being the worst and most dangerous. After years of injections, trial and error he and I agreed that his symptoms were less dangerous than the road he was on with the meds. Right now he only takes Zoloft and honestly he’s had more relief from that than anything. I keep hoping we can find a place for him that supports him and he can live without medication being a part of his life. Hospitals and doctors so far do not care. They are either experimenting with the latest drug or their latest thoughts on what will work or they just want them to calm down and go away. My son is genius level intelligent and I hope someday the world and he can see that before they see his mental health symptoms. Keep working the way you are and keep sharing please. Someday you and others like you will help bring this world back to it’s senses
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