Patients Are Still Being Misinformed About Electroconvulsive Therapy

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From Psychology Today/John Read, PhD: “Two years ago I reported, here, on our survey of patient information leaflets about electroconvulsive therapy (ECT) in England. On the basis of leaflets from 36 of 51 clinics (71%), we concluded that informed consent is not being complied with, because: ‘Patients are being misled about the risks they are taking and the limited nature of ECT’s benefits’.

This month sees the publication of two follow up papers. The first1 is a replication of our first audit, in ECT clinics in Northern Ireland, Scotland and Wales . . . The idea for the study came from our co-author Lisa Morrison who has had 96 ECTs herself.

The results were almost as disappointing as the England audit. The number of accurate statements (out of a possible 29) ranged from seven to 20, with an average of 16.9. The most frequently omitted crucial pieces of information were: cardiovascular risks (included by only five leaflets), that it is not known how ECT works (3), risk of mortality (2), risks from multiple general anaesthetic procedures (2), how to access a legal advocate (2), and that that there is no evidence of long-term benefits (1).

The leaflets also made between six and nine inaccurate statements (out of 11) with an average of 7.0. Nineteen minimised memory loss, blamed the memory loss on depression, claimed that ECT is the ‘most effective treatment’, and asserted it has very high response rates without mentioning similar placebo response rates. All 23 leaflets told patients that ECT saves lives, although almost all studies either find no difference between ECT and non-ECT groups, or that the ECT group has higher suicide rates.”

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11 COMMENTS

  1. I am no lawyer and not giving any advice.
    Not enough feedback from the relevant stakeholders that should include persons with lived experience, those harmed by it without prejudging (I assume) the veracity of their claims, and also the “critics” of ECT. Particularly when they belong to a protected class of individuals, i.e. the “mentally ill” (uugh). Or in the second case are relevant stakeholders.
    You would not question the hardship of being from african ascent living in Mexico, even if discrimination is outlawed, as I assume, one should not question the narratives of those harmed by ECT as input. It is, as I understand, a taking the input into acount to writte a legislative product, so that it can then be questioned in the courts on it’s content merits, not by it’s lack of consulting content.
    In my country that makes some laws and regulations, I guess even some manuals, dunno a leaflet, unconstitutional. Since according to it and the international Treaties we signed bind a legislative product, even by delegation to an executive branch, against the constitution or unconventional, i.e. against a treaty. Without the need to go into what exactly the regulation says. It’s a more formal affair. Strongly so when such legislative product, even vicariously, by proxy or delegation, actually originates from an unresignable duty from said Treaty, Constitution or the laws that originate from them.
    My caveat is, will it apply to a leaflet? to a manual?. Who could have legal standing to start a procedure to amend it or extinguish it on those grounds?. What about informed consent elaborated without the feedback or input of those affected or reasonably expected to be affected by it?. Particularly when members of a protected class?.
    Which actually now seems relevant in my country because there is debate around the threat of elimination of 35 Official Mexican Standards, actually pieces of legislation written by an executive branch, that dictate the minimum of clinical care in matters of diabetes, psychiatric care, pregnancy, and children’s health among others.
    And educatedly guessing, relevant people with diabetes or pregnant, like in remote comunities probably were not asked directly and will, by my logic, invalidate those norms, particularly because those pieces of legislation actually have more impact when implemented and followed or not in those comunities. The mexican NOMs (normas oficiales mexicanas). More grieviously so for the “mentally disordered” (double uggh).

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  2. This is not really news to anyone is it?

    I was recommended ECT under the guise that I had something called “treatment resistant depression” (hadn’t “responded” to years of poly drugging — benzos, SSRIs , Adderall — by a psychiatrist who as it turned out kept no records. He was too busy being the commodore of the local yacht club.)
    I tried to report him to the APA when I found out there were no records but they told me it was no big deal and he hadn’t done anything wrong. So the psychiatrist he sent me to, which was his good buddy, recommended ECT. And told me he never had a patient who had any memory problems from ECT. And he was the main ECT guy at the Ivy League teaching hospital for decades. So I went along with it cuz I was stupid enough to still believe they weren’t just a bunch of liars and frauds and turned out I did have brain damage and then they told me it didn’t work because I actually had borderline personality disorder and guess what after then no one would believe me about anything.

    I hope they all pay. I hope they experience every ounce of the suffering they caused.

    And c’mon, no one needed a “study” to show this. It’s been known for decades that these people are huge liars and ECT should have been outlawed long long ago.

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  3. I had a friend, colleague, schoolmate, that got memory damage from ECT over 20yrs ago. A female physician that got her path to a medical specialty erradicated from her future after being used on her for a bad depression. She did said that it was very severe depression, classical appareance of ages old Depression.
    Some of the memory of her training was gone, as I recall.
    Until that point I had not seen my friend for some years, expecting for her to be in a great professional path. It was only fitting.
    After that, my heart hurt everytime I saw her and heard her over the phone, too much. I had cowardly to be away, it was too much for me. I couldn’t even explain nor apologize, I just walked away.
    I was hurt very badly too in a foreign land before reconnecting with her. Viciously so, on top of mobbing that was done to me before in my own country, and in the foreing land. To get away from that, to be free of violence at great economic cost to me and my country I had to leave graduate school at a top biomedical research university. At least a paper came out of it…
    “F…g mexican” from a native american, shoulder crashes from another foreigner, professorial hellos to the wall and ceiling when I was passing by expecting a hello back, like reality testing gone wild outside the medical office. The assersation I was a psychopath and then some, and what some related to that!, by a clinical psychologist with a masters degree…
    Those were the least of the injuries I had to put up with since I was alredy indebted economically with my country, just to go to … “that” … “university”. To receive a “what do you want me to do?” from my thesis advisor and head of the lab where I was pushed to join.
    I felt safer walking a neighborhood where crack was obvious, than in the university’s buildings. Let alone among some of my “roomies”.
    It’s no excuse for going part ways, but it does add up.
    She was not only physically beautiful, smart, funny and caring among others. She was selected among others to a special group of distinguised undergraduates in medical school.
    She and her special group mates were very supportive and encouraging when I was being mobbed in my own country, in my own alma mater, with professorial encouragement and in some aquiescence. And very patient with me, they would know perfectly well why I write that.
    They encouraged me to raise my hand and my voice so that everyone else, at least in a tiny auditorium, and perhaps only once, saw what they saw first and appreciated in me.
    One of her group mates even stepped down from an internship at the most distinguised hospital in the country just as 2 places after him I could have just took his now vacant spot. Another of her group mates was the student’s president. Another was the valedictorian.
    “Like Hitler” one of my supposed friends and schoolmates demurred of me, he stuck to me for my whole medical school period. Just the last year I could get away from him on account of his poor grades. Precisely when a true friend, colleague and schoolmate stepped down from such distinguished position.
    The demurrer even called me when in a foreign land, just to vomit more bile over the wire. Despite my warnings to my family of not giving my phone number to anyone, speciallly him.
    During medical school years I had to sleep one night on the street, apparently, said my mother, “I was the cause of all her troubles”. My father probably too drunk to do anything but break things, physical, mental and spiritual.
    Too ashamed and hurt to call up on my other enduring and endearing friends for help, just for one nigt. Too alone to even ask for help when I knew any one them would have not hesitated in doing even more than that.
    All the while I even taught Internal Medicine residents the complexities of the mitochondrion while most of them were half asleep.
    A professor, writer of bioethics quipped outside a doctor-patient relationship, and obviously outside a medical facility: “Borderline”. Without me being asked nor allowing. Apparently based on a premed school psychometric that I am sure was not supposed to be used for diagnosing an unconsenting, free adult, outside of said requirements. Funny, that test was part of the selection procedure for said group of distinguished undergraduates. He even had trouble explaining what utilitarianism was and what were the problems with that particular philosophy.
    Still, no excuse, I admit, but it was a tragedy for both of us, for her and me. Who knows for how many more?
    Still hurts, decades on…
    And no, I did not pick the suddenly and favorably vacant spot. I loved being with the people, we walk on foot compatriots, for ill or for better…

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  4. The danger of ECT is clear. The US FDA (Federal Drug Administration) itself has warned: “
The long-term safety and effectiveness of ECT treatment has not been demonstrated” (21 CFR 882.5940 (b)(1)(ix)(G)). I am a shock treatment survivor myself and have personally experienced what brain damage and long-term impairments following ECT treatment can do to your life and sense of well- being. I have written about my experiences before for MIA (Michael E. Sturman, “State Hospital Memories,” June 1, 2023, and “Committed at 16,” Jan. 23, 2000). This country has only too recently come to terms with the Sackler Family (Purdue Pharma), and the harm done by their false claims for their narcotic pain medication, Oxycotin, which led to horrific harm and countless deaths. When will the Federal Drug Administration (FDA) in the US and the equivalent government agency in the UK stop the Shock Industry from making false and misleading claims about ECT, which has likewise led to so much tragedy? Studies of ECT’s safety and effectiveness meeting scientific standards have not even been required of the Industry. Or will the US and UK continue to cow-tow to the Shock Industry and let the practice continue until it is forced to stop by the courts which could take years upon years?

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    • I am no lawyer and not giving advice, but I think the courts are supposed to defer opinions into technical matters to the experts, particularly when it involves governmental regulations and it’s application, i.e. the FDA is expected to know more and DO better than your average scientific educated judge, even if in the Supreme Court, with all it’s resources. That, as far as I recall has been said by the SC itself, and it’s at the heart of some legal debate about abortion recently, they have to defer to the opinion of the experts when it came to OTC, or something, anticonception, I think…

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      • I think it is possible to build a case against them in court. You need to find a sufficiently large number of former ECT patients who complain of long-term memory loss. Do MRI scans and neurological testing on them to try to determine if there is an organic basis for their complaints. Present the evidence to the FDA. In the cases of Silicon breast implants and Thalidomide, they have taken medical devices and medications off the market in instances when patients suffered severe harm. If they still refuse to do so for ECT (or at least suspend it until a large, random controlled study is done on its safety), I think it could be taken to court. There are experts probably willing to testify against it, such as Peter Beggin, M.D. and John Read, Ph.D.

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