Systematic violations of patients’ rights and safety: forced medication of a cohort of 30 patients in Alaska
Gail Tasch1 and Peter C Gotzsche2
1S8661 Dogwood Road, Eau Claire, WI, USA; 2Institute for Scientific Freedom, Copenhagen, Denmark
This is an accepted manuscript of an article published by Taylor & Francis in Psychosis on 28 March 2023, available here.
ABSTRACT
Background: Psychiatric patients’ human rights are often violated when forced treatment orders are issued.
Methods: We assessed the records for 30 consecutive petitions for mental health commitment in which an involuntary medication order was requested, from Anchorage, Alaska.
Results: In 29 cases, the commitment petition was granted. The forced medication order was granted in 27 of the 30 cases. In 26 cases, in violation of previous Supreme Court rulings, the patients’ desires, fears, wishes and experiences were ignored even when the patients were afraid that the neuroleptics might kill them or when they had experienced serious harms such as tardive dyskinesia. The ethical and legal imperative of offering a less intrusive treatment was also ignored. Benzodiazepines were not offered. Psychotherapy was not offered or mentioned in 15 cases. The providers claimed, contrary to the evidence, that psychotherapy does not work.
Conclusions: The legal procedures can best be characterized as a sham where the patients are defenseless. The power imbalance and abuse were extreme, and several of the psychiatrists who argued for forced treatment obtained court orders for administering drugs and dosages that were dangerous. We suggest forced medication be abandoned.
Keywords: antipsychotics, forced treatment, patient rights, benzodiazepines, psychotherapy
Introduction
Involuntary civil commitment in the United States is a legal intervention. A judge may order that a person with symptoms of a serious mental disorder who presents a danger to self or others can be confined to a psychiatric hospital or receive supervised outpatient treatment. Involuntary commitment and involuntary medication proceedings must comport with due process protections under state and federal law.
In the State of Alaska, the Law Project for Psychiatric Rights (PsychRights) pursued a strategic litigation campaign against forced psychiatric drugging through its founder, James B. (Jim) Gottstein, Esq. He won two Alaska Supreme Court cases ruling Alaska’s forced drugging regime unconstitutional.
The first case was Myers versus Alaska Psychiatric Institute (2006). The court held that to be forced to take psychiatric medication against their will, the court had to find by clear and convincing evidence that (1) the patient does not have the capacity to give or withhold informed consent; (2) it is in the patient’s best interest to take medication, which means that the benefits outweigh the harms; and (3) there is no less intrusive alternative available.
The second case was Bigley versus Alaska Psychiatric Institute (2009). The court held that forced drugging petitions must include the “Myers factors” which are (1) an explanation of the patient’s diagnosis and prognosis, and the symptoms with and without medication; (2) information about the proposed medication, its purpose and method of administration, possible harms (called side effects) and benefits; (3) review of the patient’s history including medication history and previous harms; (4) an explanation of interactions with other drugs including over-the-counter drugs, street drugs and alcohol; and (5) information about alternative treatments and risks along with benefits.
On June 1, 2016, Peter C Gøtzsche testified in an involuntary medication proceeding under Alaska Statutes 47.30.839 held in Anchorage, and in connection with that reviewed four AS 47.30.839 petitions. All four petitions were strikingly similar and failed to provide the information required in the Bigley case.
We therefore wished to investigate if the legal predicates for the involuntary administration of psychotropic medication orders were uniformly lacking. We assembled two cohorts of 30 patients, one from Anchorage and one from Copenhagen, Denmark.
This report describes our experience from Alaska. The results from the Danish cohort have been published (Gøtzsche et al., 2019 and Gøtzsche & Sørensen, 2020).
Methods and materials
We asked the court to provide its files for 30 consecutive AS 47.30.839 petitions from Anchorage from January 1, 2016 onwards. Such files are confidential and to obtain them, Gottstein submitted a request that access be granted for our research while preserving confidentiality. The hospital and the Alaska Public Defender Agency, which represent almost all of the psychiatric patients against whom petitions are filed, objected to providing us with the files. It required two trips to the Alaska Supreme Court and over four years of litigation to be granted access to redacted files of these proceedings. Because of the delay, we postponed the starting date for the files.
The commitment hearings were held mostly by Zoom due to the COVID-19 pandemic. The judge, the prosecuting attorney representing the State of Alaska and Alaska Psychiatric Institute and a public defender representing the patient were present. The patients were invited but were not always present.
The hearings had two parts. One was about whether mental health commitment was required; the next about whether the petition for involuntary drug administration should be granted.
Based on the written material available to us, we noted the judge’s ruling and evaluated if, based on the criteria from the Myers and Bigley cases, the petitions, hearings, and decisions complied with the following requirements:
1 Information was provided that documented that the patient could not provide informed consent;
2 The information about the psychiatric drugs the patient took or would be forced to take was accurate;
3 A less intrusive alternative was available;
4 The combination of drugs the patient took was safe;
5 The arguments for using force were reasonable and documented;
6 The patients’ rights were respected.
We also noted if there were striking similarities from case to case considering that the patients were different, as we had observed such similarities in earlier cases.
Permission from an ethics committee was not necessary because none of the patients were identifiable in the material we received.
Results
We got access to 30 consecutive cases heard in court between January 3, 2018 and August 19, 2020.
In all 30 cases, there was a Notice of a 30-day Commitment Hearing document which outlined the patient’s rights such as having representation by counsel, calling experts, and the ability to appeal an involuntary commitment. In the following, we describe the results according to our requirements.
1 Information was provided that documented that the patient could not provide informed consent
Under AS47.30.839(g), the requirement is that the patient does not have the capacity to give or withhold informed consent in order for the medication petition be granted. Informed consent is crucial because neuroleptics can cause serious harms.
In 29 of the 30 cases, the commitment petition was granted. One case went to a jury trial and the jury found in favor of the patient.
AS 47.30.839(d) requires a Court Visitor be appointed to make recommendations to the court. The Court Visitors prepare a report and testify in the hearings as to whether they believe the individual has capacity for informed consent. Court Visitors are people trained or experienced in law, medical care, mental health care, pastoral care, education, rehabilitation or social work employed by the public guardian, the Office of Public Advocacy.
In 27 cases (90%), the medication order was granted. Even though informed consent is crucial, there was no mention throughout the hearings regarding the competency of the individual in 16 of the records (53%). In three of the cases, the patients were already deemed incompetent to stand trial and in one case the patient had a guardian.
In one case, the judge did not grant the medication petition citing the Myers case. “The doctor was confused about whether or not the patient can give informed consent or not.” However, the medication order was granted at a second hearing because the Court Visitor testified that the patient was not competent. The patient felt “knocked out” when he took medication and declined drugs but there was testimony that the patient had improved with medications.
In another case, the judge said, “I don’t have confidence in the doctor” and felt that the drugs were used in a way where the doctor would “give him this or that” in a capricious or arbitrary manner. Nonetheless the medication petition was granted.
In one case, the patient agreed to take medication but only at lower doses. The Court Visitor testified that the patient was competent to make the decision. The treating psychiatrist disagreed, and the medication petition was granted.
2 The information about the psychiatric drugs the patient took or would be forced to take was accurate
In all cases, several drugs were proposed, usually a combination of a neuroleptic and a so-called mood stabilizer (lithium or an antiepileptic), sometimes adding a drug for depression.
There was little concern about the harms. In only three cases, did the judge reject the polypharmacy (see below).
There was no contrary testimony to what the provider recommended except for cross-examination by the public defender who had little to say to oppose the state attorney and never presented an opposing psychiatrist or other expert witness. The only “proof” that the medication was in the person’s best interest was the unopposed opinion of the treating psychiatrist.
Thus, with a few exceptions, there was no way to determine if what the providers argued regarding treatment was accurate. However, some of the judges were experienced and used their own knowledge, e.g. questioning the need for so much medication and even the suggested doses. One judge thought that the patient was not psychotic, in contrast to the provider.
The patients’ experience with drugs was never taken into consideration even though it was extensive and although many expressed their opinions and there was no discussion about what types of drugs the patients preferred.
One patient mentioned that Lamictal (lamotrigine) had helped him in the past, but the treating doctor did not want to use it. He put the patient on a neuroleptic, Geodon (ziprazidone) 40 mg b.i.d., which is double the starting dose recommended by the FDA (Geodon, 2022).
In another case, the treating psychiatrist said the patient did not have any side effects from the medication, but the court visitor testified that she had tardive dyskinesia. The psychiatrist became defensive and said, “She will experience neurological damage if she is not treated,” and the medication order was granted. The patient had involuntary mouth movements from years of Thorazine (chlorpromazine) treatment.
One patient was vehemently objecting to medication and noted that it made her hands cramp. She requested a psychotherapist and said her son would pay for it. The provider argued that “There would be no therapeutic benefit from therapy.” The patient objected to medication because it “takes my feelings away,” but the provider said: “I will give you medications that get your feelings back,” even though no psychiatric drug can accomplish this. As in several other cases, the provider requested two neuroleptics. In the medication petition hearing, the public defender quoted the Myers case, arguing that the patient should have the least intrusive treatment and should not be given two medications. The judge ordered that she would be treated with i.m. olanzapine if she refused to take Depakote and Ativan (lorazepam).
One patient experienced tremor from Haldol (haloperidol), a well-known harm of the drug, particularly at overdosage (Haldol, 2022). The public defender requested limiting the dose to 30 mg orally daily. The provider, a nurse practitioner, requested up to 100 mg orally on a daily basis, which is an extreme dose. The recommended doses go up to 6 mg daily for moderate symptoms and 15 mg for severe symptoms. During the hearing, the prosecuting attorney for the Alaska Psychiatric Institute said that there was an instruction from the Alaska Supreme Court that courts should not micromanage petitions for medications. He also argued that 100 mg of Haldol was the medical standard of care, but the judge limited the dose to 30 mg.
All the treating psychiatrists said that the benefits outweighed the risks of the medications.
There was no discussion of the patients possibly doing better without medication or on reduced doses.
3 A less intrusive alternative was available
Consideration of alternative and less intrusive treatments along with the risks and benefits was a requirement from the Myers case. No alternatives were offered such as Open Dialogue in Europe or a facility called “Alternative to Meds” in Arizona. Benzodiazepines are much less toxic than neuroleptics but this option was not mentioned in any of the 30 cases.
In 15 cases, psychotherapy or occupational therapy were mentioned , but in every case, the provider opined that it would not be helpful.
The dangers of the psychiatric medications were minimized and in all 30 cases, the plan was to have the patients take medication and live in an assisted living facility or hospital without any thought of what could be done to improve their functional capacity and lives. For some, the heavy drugging regimen would clearly render them incapable of getting employed or sustaining relationships.
4 The combination of drugs the patient took was safe
All the providers recommended at least two medications, sometimes three or four. There was no discussion about possible drug-drug interactions even though commonly prescribed drugs can reduce clearance of other drugs resulting in overdoses.
5 The arguments for using force were reasonable and documented
In 14 cases there was some reference to force being used. Several patients were held down by the staff in order that they be injected. One psychiatrist testified that if a patient refused oral medications, he would be held down and injected. At times, the patients were threatened with injections but they acquiesced and agreed to the oral medication rather than receiving the injection.
6 The patients’ rights were respected
The patients’ rights were not respected and their thoughts, plans and wishes were not considered.
Eight patients said that they did not need medication and eleven other patients objected to the medication due to its harms but none of the patients were granted a medication free trial period.
Striking similarities from case to case
We found that the patients were treated in the same way even though they were very different. It was not considered if substance abuse contributed to the patients’ symptoms, although some of the patients had significant substance abuse histories.
Many patients seemed to be experiencing withdrawal symptoms after they had stopped medication, sometimes abruptly, with subsequent development of psychosis, but these symptoms were always thought to be part of their primary psychiatric disorder. There was no documentation that any of the patients were warned about the possibility of severe withdrawal symptoms if the psychiatric medications were abruptly discontinued.
Discussion
The human rights of the patients whose court documents we reviewed were systematically violated and the precedents stemming from the Myers and Bigley Supreme Court cases in Alaska were consistently ignored.
The psychiatrists argued that it was in the patients’ best interests to be forcefully treated with a neuroleptic. This argument is doubtful. Neuroleptics do not have any specific effects against psychosis and should therefore not be called antipsychotics. They work the same way in patients, human volunteers, and animals, basically by subduing them (Moncrieff, 2013) so that they cannot function, which is why their original name, major tranquilizers, was more appropriate.
It is well-known that placebo-controlled trials of neuroleptics are highly flawed. One of the reasons is that patients recruited for the trials are already in treatment with such a drug before randomization (Gøtzsche, 2022, page 44). Neuroleptics can cause psychosis, known as supersensitivity psychosis or oppositional tolerance, even during continued treatment (Moncrieff, 2006, 2013, page 45). These drugs decrease dopamine levels, and the number of dopamine receptors goes up to compensate for this. If the drugs are suddenly stopped, the response can very well be a withdrawal psychosis. The trials therefore only show what happens when patients randomized to placebo are harmed by withdrawal effects.
Another important bias is the lack of blinding because of the drugs’ conspicuous harms. When atropine is added to the placebo to mimic some of the harms of drugs for depression, the effect is markedly smaller than in usual placebo-controlled trials (Moncrieff et al., 2004).
Virtually all of these trials are carried out by the drug industry, and a third important bias is serious manipulation with the data analysis or outright fraud (Gøtzsche, 2015, 2022).
Despite these biases, the effect reported in the placebo-controlled trials of recent drugs submitted to the FDA was only 6 points on the Positive and Negative Syndrome Scale (Khin et al., 2012), whereas the minimally clinically relevant effect corresponds to about 15 points on this scale (Leucht et al., 2006).
The huge CATIE trial, financed by the US National Institute of Mental Health is also telling of the poor effect of the drugs (Manschreck & Boshes, 2007). It randomised 1493 “real world” patients with schizophrenia to olanzapine, quetiapine, risperidone, or ziprasidone, or to an old drug, perphenazine, marketed in 1957. The primary outcome was a very reasonable one, time to discontinuation for any reason, which reflects both the benefits and the harms of the drugs. After 18 months, only 26% of the patients were still on the randomized drug, and perphenazine was not worse than the newer drugs and did not produce more extrapyramidal harms than these agents, even though this is usually claimed (Gøtzsche, 2022).
That it should be in the patients’ best interest to be treated with neuroleptics is contradicted by randomized trials with long-term follow-up and carefully conducted observational studies comparing treated with untreated patients. They have shown that more patients get rehospitalized and end up on disability pension when they receive neuroleptics (Whitaker, 2002, 2015; Wunderink et al., 2013) (this research is summarised in Gøtzsche, 2022).
In addition to ignoring the Myers requirements, the court violated the principles laid down in the United Nations Convention on the Rights of Persons with Disabilities (United Nations, 2014). The Convention specified that member states must immediately begin taking steps towards the realization of the patients’ human rights by developing laws and policies that respects the person’s autonomy, will, and preferences. The convention has been ratified by virtually all countries except the United States, but this cannot be an excuse for not living up to it. We have an ethical obligation to respect the patients and involve them in our decisions, and this ethical imperative cannot be suspended. Being psychotic does not mean that the patients are incapacitated as regards their views on and experiences from being treated with psychiatric drugs.
Polypharmacy of patients with psychosis was very common but it increases their risk of dying markedly. It is particularly bad medicine to try to force two neuroleptics on a patient, as these drugs double the risk of dying (Gøtzsche, 2022, page 47 and Zyprexa, 2022) and as this harm is clearly dose related (Joukamaa et al., 2006; Ray et al., 2001, 2009; Tenback et al., 2012; Waddington et al., 1998). Antiepileptics also increase the risk of dying, e.g. they double the risk of suicide (Neurontin, 2020).
The argument that the patients’ brains will be damaged if they are not treated with neuroleptics was used in the court and is also commonly seen in textbooks (Gøtzsche, 2022), but the truth is the opposite. Neuroleptics can cause irreversible brain damage (Andreasen et al., 2013; Gøtzsche, 2022; Ho et al., 2011), and it has never been shown that the psychosis per se can cause brain damage. One serious type of brain damage is tardive dyskinesia, which psychiatrists often ignore. Among 58 consecutively admitted patients with acute psychosis, 48 of whom were treated for at least one week with neuroleptics, the researchers found 10 patients with tardive dyskinesia, but the psychiatrists only made this diagnosis in one of them (Weiden et al., 1987). It took psychiatry 20 years to recognise tardive dyskinesia as an iatrogenic illness (Breggin, 2008), even though it affects about 4-5% of patients every year (Moncrieff, 2015), which means that most patients in long-term treatment will develop it.
The internationally established principle, confirmed also in the Myers case, of offering a less intrusive treatment was totally ignored. Benzodiazepines are far less dangerous than neuroleptics and even seem to work better for acutely disturbed patients (Dold et al., 2012), but they were never offered.
Psychotherapy was not offered either and in all 15 cases where this issue was raised, the providers claimed it does not work, which is wrong (Gøtzsche, 2022; Freeman & Freeman, 2014; Hutton & Taylor, 2014; Moritz et al., 2011, 2014; Morrison et al., 2014; NICE, 2014). A systematic review of seven trials showed that cognitive behavioral therapy can reduce the risk of developing psychosis by 50% (Hutton & Taylor, 2014), which is a huge effect.
It was not until 2014 that the first trial of psychotherapy in people with schizophrenia who were not on neuroleptics was published (Morrison et al., 2014). All the patients had declined to be treated with such drugs. The effect size was 0.46 compared to treatment as usual, about the same as that seen in seriously flawed trials comparing neuroleptics with placebo, which is a median of 0.44 (Leucht et al., 2013). These and other results, e.g. those obtained with the Open Dialogue approach in Lappland compared to treatment as usual (Bergström et al., 2018; Gøtzsche, 2022; Seikkula et al., 2006; Svedberg et al., 2001; Whitaker 2002, 2015), suggest that psychotherapy is better than drugs, particularly in the long run.
Psychotherapy for schizophrenia also seems to be cost-effective. According to a NICE guideline from 2012, a systematic review of the economic evidence showed that cognitive behavioral therapy improved clinical outcomes at no additional cost, and economic modelling suggested that it might result in cost savings because of fewer hospital admissions (Freeman & Freeman, 2014; NICE, 2014).
Comparison between Alaska and Denmark
The human rights violations in Alaska and Denmark are much the same. Not in any of the 30 consecutive cases from Denmark was clear and convincing evidence presented that the proposed treatment was in the patient’s best interest (Gøtzsche et al., 2019 and Gøtzsche & Sørensen, 2020).
According to Danish law, forced medication should be with drugs with the fewest possible adverse effects, but this condition was violated in 29 cases (97%). The Appeals Board’s main argument for using force was that the patient was insane and that the prospect of cure or a significant and decisive improvement in the condition would otherwise be significantly impaired.
As noted above, both arguments are invalid. Like in Alaska, the Appeals Board seemed mainly to have a cosmetic function, rubber stamping what the psychiatrists’ wanted and focusing on uncontroversial issues it could easily check and not on what was best for the patients. In both countries, the outcome was a foregone conclusion, and the patients were not respected.
The patients’ reactions were also similar. Several patients expressed fear of dying because of the forced treatment. These very valid concerns were ignored or cited as proof the person was delusional, even though in Denmark some patients at a psychiatric ward had seen fellow patients suddenly drop dead because of the neuroleptics forced upon them, and some have even died themselves from neuroleptics shortly afterwards on the same ward (Christensen, 2012).
Several patients, both in Alaska and Denmark had clear signs of tardive dyskinesia, which were discounted by the psychiatrists who ascribed it to their illness even though schizophrenia cannot cause tardive dyskinesia. The psychiatrists recommended continued treatment with neuroleptics despite the serious harms they had caused.
In neither country was the issue of withdrawal symptoms ever brought up even though some of the patients suffered from them, including lack of control, aggression and withdrawal psychosis.
Akathisia was also ignored even though this drug harm is dangerous, as it increases the risk of suicide, violence, and homicide (Gøtzsche, 2015, 2022). In Denmark, a high-ranking member of the board of the Danish Psychiatric Association noted that a patient had developed akathisia on aripiprazole, but he nonetheless recommended forced treatment with this drug even though it had been stopped because of the akathisia (Gøtzsche & Sørensen, 2020). This is serious medical malpractice.
The patients or their disease were blamed for virtually everything untoward that happened. We found several clear examples that it was the impending use of force that made the patients aggressive (Gøtzsche & Sørensen, 2020). In five of the Danish cases, the explicit purpose of forced treatment was not to benefit the patients but to prevent them from disturbing the staff and other patients.
In Denmark, we had reservations about the psychiatrists’ diagnoses of delusions in nine cases (Gøtzsche & Sørensen, 2020). For example, when a patient rejected olanzapine totally, this was called a persecutory delusion; another patient who became “hotheaded and difficult to communicate with” as soon as a neuroleptic was mentioned, was called “paranoid and conspiratorial about how we rally against him”. One patient with clear signs of tardive dyskinesia was said to have psychotic misconceptions about the “postulated side effects;” when a patient mentioned that she was served meat even though she was a vegetarian, this was interpreted as a delusion; and a patient who wanted to complain about being subjected to forced medication was also called delusional.
The disconnect between the views of the psychiatrists and their patients was vast. In all 21 cases in Denmark where there was information about the effects of previous drugs, the psychiatrists stated that neuroleptics had had a good effect whereas none of the patients shared this view (Gøtzsche & Sørensen, 2020). Even when the patients had explained that they could not tolerate the drugs, they were forced upon them to “preserve their health.” One patient noted that one definition of madness is administering poison and expecting your victim to heal.
In Alaska, one patient felt “near death” while taking drugs but her psychiatrist said, “She is improved on medications.”
The approach in both countries was to focus on heavy medication instead of recovery.
In the US, it has been documented that psychiatrists, with the full understanding and tacit permission of trial judges, regularly lie in court to obtain involuntary commitment and forced medication orders (Gottstein, 2002; Gøtzsche, 2015). Mendacious information is routinely included in petitions and testimony also in Alaska. Gottstein’s book, The Zyprexa Papers, details this with some particularity regarding the forced drugging proceedings against Bill Bigley (Gottstein, 2021).
In Norway, the Ombudsman concluded in December 2018 that the Psychiatry Act had been violated in a specific case because the randomized trials showed that the probability of achieving the intended improvement was low (Gøtzsche, 2019).
Conclusions
The legal procedures can best be characterized as a sham where the patients are defenseless. The power imbalance and abuse were extreme and several of the psychiatrists who argued for forced treatment obtained court orders for administering drugs and dosages that were dangerous. We suggest forced medication be abandoned.
Acknowledgment
We thank Jim Gottstein for his invaluable help with getting access to documents.
Funding
The study was not funded.
Contribution of each author
PCG wrote the protocol for the study; GT interpreted the raw data; and both authors contributed to writing the manuscript.
Competing interests
None.
Data sharing
The anonymised raw data can be obtained from the authors.
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