A new article, published in the journal Psychosis, summarizes the barriers to shared decision making in antipsychotic treatment prescribing practices for patients diagnosed with schizophrenia and other psychosis-related diagnoses. From the perspective of both service users and providers, the authors reveal four primary domains to be evaluated for shared decision making to be better achieved.
âDespite the potential for adverse effects, service users taking antipsychotic medication have often reported a lack of choice in whether to take them or not. Reasons for this include feelings of coercion and lack of information and support. Clinicians may still view taking antipsychotics as a moral responsibility and refusal as foolish.â
Antipsychotic medication is the prominent treatment for people diagnosed with schizophrenia and other psychotic spectrum disorders. While treatment with antipsychotics has been shown to prevent relapse in some cases, there is an abundance of research that taking antipsychotic medications long-term can lead to a range of severe adverse side effects, including increased risk for early mortality. Despite the empirical research to support these adverse findings, service users continue to report a lack of choice in taking them.
Shared decision making is considered a major element of the philosophy of patient-centered care. In recent decades, the medical field has begun to shift towards more patient-centered care. Still, shared decision making for people diagnosed with schizophrenia and psychotic spectrum remains a unique obstacle.
Barrier 1: The bidirectional exchange of personal and medical information
The authors, led by researcher Lisa GrĂźnwald at University College London, highlight the need for a bidirectional exchange of personal and medical information between the patient and clinician, which can be difficult to achieve. Due to a distrust of the system and institutional betrayal, service users tend to tailor their medication to meet their needs without consulting their clinical teams.
Past experiences of coercion have led service users to distrust the recommendations provided to them. Therefore, they often attempt to take their treatment into their own hands by being selective in what they disclose about their symptomology. Additionally, clinicians have concerns about medication compliance that inhibit true informed consent. The authors explain:
âClinicians may feel pressure to ensure medication adherence, leading to a reluctance to share information regarding potential adverse effects. Clinicians may worry about service users refusing or stopping medication they were given all the information. Therefore, they may not disclose all of the information necessary to achieve true informed consent from service users.â
Barrier 2: Decisions involve both the patient and clinician
Compounding this concern is that, historically, service users have not been considered experts of their own experience. Clinicians have reported thinking that service users lack insight, and therefore service users have reported experiences that feel dismissive.
Additionally, clinicians may have the perspective that service users are untrustworthy, despite the stability of a service user’s condition. Further, studies have reported clinicians are sometimes frightened by people with severe diagnoses such as schizophrenia, which prevents effective communication.
Barrier 3: Outcomes and options should be openly discussed and weighed
Another barrier to shared decision making occurs in the lack of discussion about outcomes and options and the risk that disclosing all possible outcomes of the medication will deter compliance. However, without transparency in these discussions, service users may choose not to adhere to treatment plans, leading to unsafe medication practices.
âStudies have illustrated that clinicians often prioritize symptom reduction. However, other research shows that service users prioritize lower doses of antipsychotic medication, facilitating a reduction in side effects to improve the overall quality of life. This misalignment of goals can be problematic and prevent SDM from occurring.â
Barrier 4: Decisions are joint efforts requiring collaboration and a balanced description
With these challenges and barriers in mind, the authors highlight that, within the current paradigm, collaboration and balanced description may not be achievable. Therefore it is difficult to achieve not only shared decision making but genuine informed consent. These barriers are potentially continuing paternalistic practices and hindering true patient-centered care.
The authors urge providers to work towards eliminating these barriers and moving towards true patient-centered care. The onus is on clinicians to re-start the conversation with service users. Clinicians need to encourage open and honest discussion, providing time to listen to service users’ concerns and desires about antipsychotic medication without fear of being penalized or coerced.
Re-starting this conversation between service users and clinicians would be a step towards enabling service users to enact the agency that is promoted through the provision of patient-centered care.
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GrĂźnwald, L. M., & Thompson, J. (2021). Re-starting the conversation: Improving shared decision making in antipsychotic prescribing. Psychosis, 1â5. https://doi.org/10.1080/17522439.2021.1903979 (Link)
Reading this makes me feel even more hopeless than I already did. There’s so much wrong here. I don’t even have the energy to list everything that’s wrong here and I’m coming to realize that it makes no difference. Whatever an ex-patient has to say about this ridiculousness falls on deaf ears. For starters, though, this article seems to assume that antipsychotics are only prescribed/forced on patients who are currently experiencing psychosis. This is patently untrue. I have personally witnessed many cases of antipsychotics being prescribed by treatment providers who have a problem dealing with patient anger. Not psychosis, anger.
Why would a patient being treated in (trying to survive) this system be angry? Huge mystery. Huge.
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They are also often used on children or the developmentally delayed or the elderly for “aggression.” As one can imagine, it’s pretty easy to conjure up some “aggression” in any of these populations by just putting hands on someone and trying to move them, and when they fight back, call them “aggressive.” Psychosis these days is the tip of a much larger iceberg when it comes to “antipsychotics.”
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Steve,
Yes, the actual ways these drugs are pushed/forced on people gets completely ignored here. I can’t with these articles. They’re so out of touch with reality. I don’t think anything is changing or will change, except to keep getting worse. I held on to the delusion that my voice mattered, that anyone would care about what I experienced or my thoughts on it… I held on to that delusion way too long. My family doesn’t care or believe me. My friends who are all gone didn’t care or believe me. No one in the system cares or believes me. What’s the point.
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It matters to some people. Not all, or even most. We have to find that small cadre of people who really see beyond the surface. They are rare but they DO exist!
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Thanks, Steve. I know you’re right. It’s just hard to see it sometimes. I was reading through some comments about a YouTube video. Someone made a comment about psych drugs — just about how dangerous they are, and that she personally knows several people who’ve been really damaged by the drugs. I think the comment mentioned something about school shooters and the correlation between that and being on psych drugs. So many people attacked her. I was surprised by the level of vitriol directed at her just for expressing this opinion. People telling her that she needed to be medicated and that she was not in touch with reality. And then there was a comment from “a professional” (psych nurse I think) saying that the problem is that the drugs “take a few months to work” and that people stop taking them before they kick in and that’s the tragedy…that people go off the drugs too soon, the drugs that would fix their “mental imbalance”. People said that to me for years — that I hadn’t given the drugs enough of a chance.
There was one comment from a person who said that she had been harmed by the drugs, but there were at least 10 commenters who were ready to fight about how wonderful the drugs are and that anybody who thinks that they’re dangerous must need to be on them. Sometimes it does feel like we’re going in the wrong direction.
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You can tell by the intensity of the response who doesn’t have the real data behind them. Why would there be a need to put down someone sharing their own negative experience if you are SO confident that the drugs are great? Couldn’t you just listen and say, “Wow, that sucks! That didn’t happen to me, but if it happened to you, I’m really sorry to hear it. I guess they don’t work the same for everyone!” Is it that hard to be a tad empathetic? Apparently.
But there is still that one out of 10, and that’s who we have to look for, I think.
I also think it matters what site you go on. I used to post occasionally on the CHADD site (very pro-drug ADHD site, or was at the time at least, kind of like the NAMI of “ADHD” parents). Man, you had to tread lightly not to be attacked or tossed off the site! I stuck to sharing studies and alternative approaches, and my own experience with MY own kids, but still got attacked. I told them I had two “ADHD” type kids who grew up fine without drugs. I admitted it was a lot of work and required a lot of creativity and research and just trying things out. Still, they said things like, “It’s great if your kid has a mild case and you can get by without drugs.” (There was nothing MILD about Patrick, I can tell you, and Kevin would have been just as tough, except we learned from Patrick how to handle him!) Or, “I know this worked for you, but we don’t want you to discourage or shame other parents who might need the medication for their kids.” They “corrected” me when I said “drug” instead of “medication,” even when I pointed out that d-amphetamine was actually a street drug of abuse.
I may have educated a few people but most of their minds were made up. So I stopped wasting time on it and started looking for sites that were less rigid and medical-model oriented. I still toss out some corrective data in that kind of site from time to time, but I don’t expect to be welcomed there! Mostly, I try to find communities like this one where my views are a little more “mainstream,” even when the site is totally NOT mainstream!
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Duplicate comment.
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Psychiatry relies on these people. They sit there all quiet, their crimes being protected by these people who never got to think through it. It is exactly like a cult, where the leaders really rely on delusions. Actually I don’t think psychiatry respects those who believe in psychiatry. Because psych is the one most aware after a few years of practice, how false the cult-ure is.
Psych knows all about delusions.\
I saw a man yesterday talking to himself. He was definitely over 50. I honestly can’t tell the difference between most shrinks and the man, they both have stories running through their heads, and they are both about other people and events.
And lol, waiting a few months until they “kick in”. If they were a professional, or even be able to think things through, they would not utter such non sense. But you are correct, there is not a damn thing you can do about people’s beliefs. The majority does not think.
It is difficult to teach people how to think.
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sam plover, Honestly, I am not sure we can teach people how to think. I had an English teacher in high school who attempted to teach us what he called “Critical Thinking” that he said was the most important thing he could teach us. Still, can you really teach anything? Yes, I know we go to school to learn as they used to say “reading, writing, and arithmetic” and a million other things. Still, they taught me math which I still struggle with… I think there may be two ingredients involved; the student has to want to learn and the student has to have the “ability” to learn. The latter is really just a matter of “aptitude” such as the aptitude to do math or write or anything. Thinking critically, well, some may just may not want to expend the effort. It is, for some to many, way to easy to go along with the crowd. But, then, what happens when that crowd really does jump off that cliff? Thank you.
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Steve, I agree absolutely. I think there’s something behind the need many people seem to have to attack anyone who talks about psych drugs causing damage. I mostly stick to websites like MIA now. I just happened upon those comments after a YouTube video that was only tangentially related. I have found that sometimes MIA is the only place I can find validation. Maybe my own views have changed to where I now believe that the system cannot be reformed, that its inherent inherently corrupt and engages in practices that violate human rights. I didn’t think that even a couple years ago.
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First, I know they speak of “collaboration” between “patient” and “prescriber” however, taking these drugs cause someone to lose all ability to judge, to make rational decisions, to even sign their own name. Also, the person is usually operating out of some sleepy, loopy world. Sadly, the person usually becomes incapable of being to make the determination that the drug might even need some adjustment or the person should stop taking the drug altogether. Sometimes, even missing a dose of these drugs can throw the person into premature withdrawal and this further cements the idea that they are sick and need this drug, no matter how harmful it is. Second, I remember, years ago, before I found this site and when I read Whitakers book, “Anatomy of an Epidemic” which opened up my eyes, I was posting on a “pro-schizophrenia site.” It may have been connected to some of E. Fuller Torrey’s work. I told them that they should think first before taking one of these pills. I received horribly abusive comments; like “don’t you know how fragile we are” and worse. I thought to myself that these are sad people who are resigned to this “patient/drug/mental illness” type of life and don’t want anything else. I closed down my “account” there. It is very difficult to find those who will acknowledge the harm these drugs bring. If you think that Big Pharma owns much of Mass Media and you are more likely to see a news report on how to deal with the stigma of mental illness rather than a report on someone who has survived despite being damaged by these drugs, you can see what we are up against. And, yes, normal anger is incorrectly assumed to be aggression which is incorrectly assumed to be psychosis and then the person is incorrectly given a drug which even in the short-run will do them more harm than good. Perhaps, someday, if we keep fighting the good fight, as they say, things will change. We will really be mainstream. I am not sure about the mainstream in evidence now. Thank you.
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I have such an uncomfortable response to the term Shared Decision Making. Any one else wonder why mental health service users have to share their decision making process with the so called experts rather than simply being given all the information and support they need to be empowered to make their own autonomous choices? I know I never wanted to share my power over myself with another person. If sharing means telling people about my choices that’s fine. But it doesn’t mean that here. It means you need the permission of the prescriber to make a choice. Not my definition of being afforded free will. I reckon the biggest barrier to shared decision making is the stigmatising assumptions inherent in the term itself.
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Thanks Miriam. Bang on.
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You’re right. Why should I share my decision making with anyone, unless I choose to… Psychiatrists, would like you to believe that because you have that certain diagnosis, you are unable to make a rational decision. However, there is some truth to this. But, it is not due to the diagnosis or alleged diagnosis, it is the drugs they give you to make that alleged diagnosis believable to them, not you. They don’t care about you. Still, they want you to think that an alleged mental illness can be a life or death matter, in which, the person is “comatose” and unable to make any decisions or acting erratically or whatever. I would say back to the the drugs again. I know from personal experience that the drugs can make you so “comatose” you just sleep. I say I know, because it happened to me. Thank you.
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You know, that’s a great point I never thought of! If someone is a client of a doctor or other professional, the doctor works for THEM! There is no “shared decision making,” the decisions are made BY THE CLIENT! And the interesting part is that the alternative to “shared decision making” is cutting the client out of the loop entirely! We’re supposed to be excited by the prospect that the PROFESSIONAL will deign to “share” decision making with the client. Whereas the CLIENT should be the one deciding whether s/he wants to follow the advice of the “professional” in every case.
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Steve McCrea, I wish I could agree with you, but, sadly I have found that many non-psychiatrist M.D.s these days do practice shared decision making. If fact, many times, if you question them they feel threatened. I am not sure if it is my gender or that I was a psychiatric patient. The other reason it could be and I am concerned this might be a reoccurring reason, although many M.D.s will, of course, deny it, is I am beginning to believe there is a strong bleed-over from psychiatry, etc. into traditional medicine. It seems more and more each day, traditional medicine is being tainted by the influence of psychiatrists, etc. I am afraid that this does not bode well for healthcare in America. Thank you.
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Oh, believe me, I agree with your observation! I have to fight to have “informed consent” many times when I see any kind of mainstream medical practitioner. I avoid MD’s like the plague for that very reason! And when I am forced by circumstances to talk to one, I start them off with a preamble that I am going to listen to their advice and make my own decisions, and if that’s a problem for them, let me know right now and I’ll find another practitioner. I rarely have to do so, but I have. You have to be an advocate any time you go see an allopathic physician. Some of the younger ones seem a little better, but I assume they’re going to be arrogant and self-absorbed until proven otherwise.
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Rebel, I’ve also seen how other doctors in healthcare systems — say, rheumatologists or primary care doctors — seem to not only accept psychiatry as a legitimate field of medicine, but will often bring it up in situations that they don’t have an answer for, which is a lot of situations. All of the autoimmune diseases and many other illnesses of course have effects on a person’s mental state. That’s common sense. But that doesn’t mean there’s not a physical basis to the illness that needs to be addressed. Having both a borderline diagnosis and a fibromyalgia diagnosis, I was always being pushed back towards psychiatry in interactions with these other doctors.
I hope I’m making some sense. I’m having a lot of trouble anymore just putting a sentence together.
Anyway, I agree that it does not bode well for healthcare that other fields of medicine accept psychiatry as valid. It makes me lose respect for all doctors. If they don’t know that psychiatry is based on junk science, what else don’t they know?
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My experience of shared decision making is as follows:
Psychiatrist:. “I need to renew your abilify prescription. What dose of Abilify do you think helps you the most?”
Me: “I’ve never seen any benefit from taking Abilify. In fact I think it makes things worse. I feel very agitated when I take it.”
Psychiatrist: “I’ve seen you off Abilify. I’m prescribing 15 mg a day.”. Psychiatrist then indicates that the conversation is over.
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Ohh Katel, that is EXACTLY how it goes down.
So interestingly, he thinks seeing you off the drug is a way he does not like to see you.
So the drug seems to do the trick for HIM.
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Thanks, Sam. Yes, it was more about the Dr.
The comment has stayed with me because it was a Dr that I thought, at one point, really cared about me and had made time for me, talked to me about writing, given me a couple of books. In that conversation, which was the last conversation I ever had with her, as she was leaving that clinic and I was also being discharged. I felt like she had given up on me.
But I also thought, how unscientific… To think that the amount of time we’ve actually spent together where she was able to observe my behavior that she could form a conclusion about what I am like on and off Abilify. And she had some way of course to exclude all other variables. If I had ever made a blanket generalized statement like that, I would have been prodded to use my skills, check the facts, stop judging, not succumb to black and white thinking etc. But the doctor could get away with it and not be challenged.
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I was already being called non-compliant at that point, and that entire interaction was a set up for more accusations from my treatment providers, and more notes in my medical record about my non-compliance. My choice at that point was either to take this high dose of a drug that I knew then was making me feel horrible and then I understand now is causing akathisia, and to deal with the horrible feeling completely on my own because no one would believe me that it was coming from the medication. (The same psychiatrist had recently done a presentation at a conference on borderline personality disorder. Her presentation was about how Abilify healed the part of the patient’s brain that was broken and that was making them “behave borderline”. She was fully invested in the safety and effectiveness of this drug.) Or to demonstrate once again that I was a non-compliant patient, which is a loaded term.
The term non-compliant, and the way it is wielded by treatment providers, shines a light on the fact that there is really no such thing as shared decision making. In my experience, non-compliant means, the patient disagrees and, also in my experience, disagreeing is a treatment interfering behavior.
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Non-compliant seems to suggest that the patient is a child and the doctor is in charge of discipline if the patient doesn’t do as s/he is told. It’s a pretty disturbing concept if you think about it.
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steve mcrea, You are right about the non-compliance in suggesting that in psychiatry, etc. the analogy of doctor/patient is like parent/child. However, that is as if the parent is tragically abusing the child. I grew up in a strict military home environment and although my father and I had our “moments” he would never have treated me in such an abusive way as many of these psychiatrists did. Now, that I think of it, I wish I had not been so drugged or I could have told him. He probably thought they were doing me good. But, then, it goes to show you why they drug their patients so much; so their patients can be so drugged that they are unaware of the abuse they are receiving. Thank you.
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Katel, I have had similar experiences until with the Abilify, I began unable to swallow and the psychiatrist had to take me off of it, but he returned me back to risperidal. Later, a different psychiatrist through her “medical team”–the ones who ask you the preliminary questions, took your weight and temperature, etc. relayed to me how I should take the full dosage of seroquel she prescribed me, even though the drug gave me unbearable headaches and basically, she told me it was my non-compliance that caused the problem and why didn’t I just take tylenol when I got the headache. How usual for these psychiatrists, if one drug causes problems, they will just add another drug to take care of the problems, not concerned of the problems that that drug can cause, i.e. tylenol in excessive amounts or taken as a maintenance type drug can cause liver damage. Psychiatrists’ answer to everything is drugs. That is their idea of shared decision making. Drugs and more drugs. Thank you.
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Katel, You are right about traditional doctors and doctors in other specialties. If they can’t seem to find anything wrong or it doesn’t fit their criteria, they just try to send you to a psychiatrist. Also, I know about trouble putting sentences together—sadly, it’s part of the brain injury/damage from the psych drugs—but you did just fine. Good Luck. Thank you.
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duplicate comment
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Ha!
A for effort, but I have notes… Yall know this field is all violence and coercion, right? I feel nauseated on behalf of MH pro hopefuls who still believe that antipsychotic drugging is nuanced. That disillusionment will be brutal. In practice, “Shared decision making” to assist a “patient” in med-compliance is the usual absurdly grim dystopia
Here were my barriers :
1) antipsychotics were forced on me when I was a child
2) You’re not allowed to ever get off antipsychotics.
3) After a while, antipsychotics start to kill you
4) Psychiatrists treat the physical ailments caused by antipsychotics with more antipsychotics
5) When you are dying from antipsychotics while fleeing the MH system, your opportunities for a successful life are nullified. The social stratification of the SMI status= forced drugging.
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I think this was a great article and I’m glad this kind of research is being done, but it’s so absurd that the clinician’s fear of a diagnosis can provoke the clinician into forcing their client to take pills that make them sick. Some of these clinicians take advantage of this field’s cult-like bias against their clients. Domestic violence via psychiatry comes to mind.
Suffice to say, this article summarizes the experience of the service user. My prior comment was written in good faith, from the perspective of a former service user. I mean to agree with this research, add my own voice and vent.
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As I’ve said before, in what other area of “medicine” do we have to have a discussion of “shared decision making,” with some doctors OPPOSING the idea of sharing with the very person being “decided” about? It is the CLIENT who should be deciding how much decision-making to share! What happened to “informed consent?” We shouldn’t have to be talking doctors into SHARING the decision making with patients. Patients should ALWAYS be the decision-makers if they are in any way capable of communicating their intentions, and doctors should be ADVISING them. The fact that patients have to ASK to be a part of the decision-making process shows how screwed up the power dynamics really are.
The only barrier to “shared decision making” is prejudice and discrimination by the practitioners.
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So much about this discussion in the article comes across as clueless. The first glaring issue that jumps out at me is the seeming cluelessness that professionals have in thinking that only patients who have been diagnosed with schizophrenia or other psychotic-related disorders are coerced/ forced into taking antipsychotics.
When I was in DBT, following years of polydrugging by a psychiatrist who kept no records and gave no informed consent and then called me treatment-resistant and passed me on to the next one who did ECT and then told me that that didn’t work because I had borderline personality disorder, by that point I was disabled… Everyone I knew in the DBT group was being poly-drugged. An “anti-psychotic” of one kind or another was always a part of that mix. Abilify, Risperdol, Geodon, Zyprexa, Seroquel, Latuda…on and on.
In my case and from what I can see in a lot of people’s cases, they were made to take these drugs because they had what the professionals deemed as anger issues. Yes, we were angry, because we were being treated like we were subhumans and criminals. And then we were expected to act grateful for the “help”.
The minute anyone wanted to be non-compliant with their antipsychotics, the verbal assault started: “Non-compliant.” “Willful.” “Lacking awareness.”
The patients who had marked that they had experienced an “urge to skip meds” on their diary card would be humiliated in front of the group. They would be asked, “Are you a doctor? Did you go to medical school?” by DBT therapists who thought the best answer was to just humiliate them into compliance.
I remember a psychiatrist at that IOP who used to talk about how Abilify “fixed” the thing that was wrong with our brains that made us borderline. She had a little PowerPoint presentation on it. I don’t know where she got any of that “information” from.
I remember people who would barely be able to sit in group. Their legs would bounce up and down, their feet would move constantly, their hands. They had a box of “distress tolerance” items in the room, things patients could fidget with so they wouldn’t have to miss any therapy time.
No one ever talked about akathisia or any of the other side effects of the drugs. I didn’t even learn the word akathisia until 10 years later. I learned it on my own.
It’s probably safe to assume that anyone who agrees to take antipsychotics, on any kind of long term basis, is doing so under some form of coercion, distress, or disinformation. Pretty much no one agrees to brain damage plus physical “side effects” loss of ability to feel pleasure, and a much shortened life span.
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