After being injured by ECT, I learned of several risks patients aren’t aware of. I reached out to the FDA to help educate the public. Their response to my FOIAContinue reading
Originally posted on Mad in America
As a young university student studying creative writing at Brigham Young University, I never imagined that my writing career would be prematurely halted by medical treatment just six months after graduation. You see, my doctors presumed I had agitated catatonia and ran 450 volts of electricity through my head 116 times to “reboot” my brain. They called it electroconvulsive therapy (ECT). I call it Electroconvulsive Trauma.
By the time I quit treatment against medical advice, I could no longer read. I lost the honors-educated vocabulary previously used to edit university faculty papers for publication. I lost my “mind’s eye,” critical to writing vivid descriptions of imagined events. Worse than that? ECT erased my work experience, university education, and the formative events of childhood, youth, and young adult years.
It is as if, like a person whose existence was fabricated for the witness protection program, I exist only in written form—by handwriting that looks like mine—in journals which contain facts of my life, yet hold no memories. I say that because reading them triggers nothing. No emotion. No visual image of the events contained therein. No feelings. Nothing. For all practical purposes I spontaneously came to life at age 36. I can tell you well-memorized facts about myself—but those facts are not connected to my identity. There is no memory, relationships, or accompanying emotions associated with any of it—except a sense of loss and utter betrayal. I trusted my doctors not to harm me. I trusted them when they said “ECT is safe.”
Ernest Hemingway referred to his electroconvulsive therapy experience when he was discharged from the Mayo Clinic (after receiving a reported 20 ECT treatments), stating “’It was a brilliant cure, but we lost the patient. What is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business?” Hemingway died by suicide on July 2, 1959, three days after being released from the Mayo clinic following what was likely referred to as “successful ECT treatment.”
No doubt, mine was recorded as successful, too.
Psychiatry likes success, choosing to ignore and blame treatment failures on those they failed. It is the antithesis of the scientific method, in which genuinely interested parties learn from mistakes in order to improve.
Instead, we have 80 years of unregulated, never safety-tested, repeated human electrocution in the name of “best practices” and “patient interest.” Some would argue I’m using the word electrocution incorrectly because technically that requires death, but since ECT momentarily halts brain activity—causing temporary brain death and resulting coma, it’s accurate. I was electrocuted by my doctor 116 times. He said the only reason I could not remember my own phone number afterwards was because I “use speed dial too much.” I tried unsuccessfully to get a comprehensive brain injury assessment, but was told that my memory loss was transient and would return in six months. When it did not, I requested assessments again. I was denied.
Finally, I went to another psychiatrist, explaining that in order to return to school, I’d need academic accommodations. Neuropsych testing confirmed “mild cognitive impairment.” The psychologist said the deficits were consistent with people who have a history of shock treatments. I felt exceptionally lucky to get comprehensive neuropsych testing, none of my ECT survivor peers had.
For some reason, patients are not routinely referred for comprehensive brain injury assessment during or after treatment—abandoned to their own devices after treatment ends. Psychiatrists justify such actions by reassuring the public that patients are given the Mini-Mental State Examination (MMSE) to assess for brain injury after treatment. But what they fail to mention is that historically, even lobotomized patients easily pass the MMSE. Using the MMSE to measure ECT injury is as absurd as using a Weight Watcher’s scale to reassure the public that a person doesn’t have a fever due to COVID.
Doctors say ECT “saves lives” despite research to the contrary. They also say ECT is the most effective way to pull someone from extreme depression, catatonia or other severe symptoms. Last month’s groundbreaking 40-page meta-analysis report by Dr. John Read, psychologist and researcher from University of East London, Dr. Irving Kirsch, associate director of placebo studies at Harvard, and Dr. Laura McGrath of London’s Open University disagrees.
“The quality of most [Placebo versus] ECT studies is so poor that the meta-analyses were wrong to conclude anything about efficacy, either during or beyond the treatment period. There is no evidence that ECT is effective for its target demographic—older women, or its target diagnostic group—severely depressed people, or for suicidal people, people who have unsuccessfully tried other treatments first, involuntary patients, or children and adolescents. Given the high risk of permanent memory loss and the small mortality risk, this longstanding failure to determine whether or not ECT works means that its use should be immediately suspended until a series of well designed, randomized, placebo-controlled studies have investigated whether there really are any significant benefits against which the proven significant risks can be weighed” (italics added for emphasis).
Imagine immediately suspending ECT use to prioritize patient safety of a vulnerable, marginalized population. That’s my dream.
According to Sackeim’s 2004 court deposition, ECT is administered to approximately two million people yearly, worldwide. Imagine how many people live with the aftereffects of unregulated ECT after 80 years of use. American statistics are fuzzy at best. People writing about ECT still quote the 1970s estimate that only 100,000 Americans receive ECT yearly. America has no new estimates in the last forty years. The troubling reality is that unlike appendectomies or any other procedure requiring generalized anesthesia, we have no idea how many Americans get ECT each year. Worse? We have no idea how many ECT treatments each person receives and the rate at which they receive it. There is no data. I defy investigative reporters to find it. It requires funding to submit a FIOA request to Medicare, State Medicaids, and all Private Insurances in every state. Then, when you receive the aggregate data (without personal health information), researchers will never know how many treatments each person got or how closely spaced those treatments were. It’s an unregulated medical black hole—and a profitable one.
The average rate for reimbursement in California is $3,200 per ECT treatment. Which means a doctor who gives 8 treatments a day, five days a week, pockets a reimbursement of roughly $128,000 in a week for that hospital—on a machine which initially cost only $8,000. Talk about cost-effective!
The 2017 California Financial transparency report filed by Sharp Mesa Vista, in San Diego, states that that hospital provided 4,055 treatments, receiving $13.9 million in reimbursements. The numbers drop off from there because sources say Sharp lost their contract with Kaiser after a negotiation scrimmage. Kaiser took their business in San Diego to UCSD—who conveniently does not include their ECT data on the state financial transparency reports. But don’t worry, that’s not against the law in this unregulated world of ECT. Only six of the 27 Californian hospitals providing electroconvulsive therapy submit ECT financial reimbursement data on yearly financial transparency reports. Twenty-one hospitals leave that line item blank. When I submitted my FIOA request to the state for that data, they responded that “financial data on ECT isn’t required.”
442 hospitals provide ECT nationwide. Imagine what happens if an unscrupulous doctor gets reimbursed $3,200 for a 10-minute procedure requiring only enough brain power to flip a switch (because artistic interpretation allows them to arbitrarily dole out 450 volts/900 milliamperes of electricity using more than seven administration variables never standardized by the FDA). Those are the doctors who give the most ECT.
Recently I discovered that Kaiser now rotates their doctors through the ECT clinic, rather than have the prescribing doctor provide ECT. I found that an interesting development because my Kaiser doctor who prescribed the ECT is the one who gave me all 116 treatments—barring personal vacations, when he farmed me out to a doctor who gave me two treatments in one day. Now that Kaiser rotates providers, it would not be effective to track the number of ECT treatments given by a doctor like the DEA tracks prescriptions for opioids. ECT has no DEA or other enforcing agency. Is it any wonder why some human rights advocates say that ECT is an unregulated billion-dollar America industry?
Within days of the successful Riera v. Somatics, LLC settlement for permanent brain damage and permanent memory loss, Thymatron (an ECT manufacturer) published a regulatory update to their user manual stating that the American Psychiatric Association recognized seven risks independently associated with permanent brain damage and permanent memory loss. Independent risks mean that patients can be exposed to each of those risks at the same time, increasing the likelihood that they will have permanent brain damage. My treatment met five of the seven risks. And while I may have small windows of clarity when I can write something like this, I now live with chronic microbleeding in my brain stem (the focal point of bilateral ECT), acquired channelopathies (progressive neuromuscular and cognitive problems), 36 years of memory loss, forced retirement, and the physical loss of my independence. I use a rollator walker inside my home and power wheelchair around the community—on occasional days when strength allows me to leave my bed for a lengthy period of time.
Have any of the 442 ECT providers in the United States updated their patient information to list permanent brain damage and permanent memory loss as possible treatment outcomes? If they have, do they explain how that kind of damage impacts quality of life as a person ages? No. Do they tell the patients that they’ll only assess for brain injury using the MMSE—which cannot quantify injury and cognitive deficits historically recognized in ECT patients? No. Do doctors and hospitals still say it’s safe? Yes. They define “safe” differently than I do. Do they tell patients that post-treatment brain injury rehabilitation will be available only if the patient can personally fight through all the bureaucratic barriers necessary, or that it may take a decade or more to achieve access to desperately needed rehabilitation?
Clearly psychiatry is not concerned about the ethics involved with informed consent or ethical medical assessments, routinely using the MMSE and standardized scans which cannot capture the microstructural and functional injury historically documented in research. Psychiatry even refers to the lack of data as evidence that injury is “rare,” apparently missing class the day medical school taught methodology. Absence of evidence is not evidence of absence.
The UK reports providing ECT to 2,500 people per year. That’s a country with a population of roughly 67 million people. I’m not the best at algebra, but if a singular psychiatric hospital in San Diego County (population of 1.4 million people), provides 4,055 treatments in a single calendar year—in a county with four other local hospitals which also provide ECT, how many ECT treatments are given in San Diego? Why are Americans receiving unregulated ECT at a higher proportion than those in the UK? Is it because they operate under socialized medicine, while American doctors are reimbursed significantly more?
Only three states (that I’m aware of) have any measure of regulation. Even the regulations presently in place do little to protect patients. For example, California supposedly has shock laws in place, but they did not stop my doctor from giving me 116 ECT treatments scheduled as repeat acute “index courses,” (three times a week, three times a week, twice a week, twice a week, once a week, rinse, repeat. Again and again and again. 116 times). No one stopped him.
No one investigated Kaiser or Sharp Mesa Vista like they would have if it had been a doctor overprescribing opioids. I literally escaped continued ECT by running away from the residential facility that dragged me against my consent to the outpatient clinic. I knew it wasn’t a matter of simply refusing to sign the consent forms at the clinic, because the last time I “signed the consent form” I lay in restraints on a gurney as they started the anesthetic IV.
California is one of three states which have regulations in place—yet still patients can get as many as I did—and more—if doctors feel it necessary. If California’s shock regulations (requiring three doctors to sign off on a patient’s ECT) cannot prevent the overprescribing of ECT, what happens to patients who live in states without shock laws? Right now, a Connecticut woman is fighting the state to end her treatments. She already received more than 500 in five years. The public rarely hears about these cases because psychiatric ECT patients rarely have the strength or wherewithal to find someone interested in taking their case. Most ECT recipients are too brain injured to find their way to a law firm willing to take their case before the statute of limitations expires.
ECT use is likely increasing due to carefully constructed public relations campaigns to reduce stigma. Doctors and mental health providers advocating for its use state that the only thing controversial about ECT is its problematic media portrayal in a movie I never saw.
I’ve even heard discussion about increasing ECT use as a first line of treatment. There’s likely greater use on children ages 13 years old and up since the FDA’s 26 December 2018 decision to reclassify the device as Class II during the federal shutdown—without a hearing or previously requested fMRI and EEG studies. I’m curious about the closed-room handshakes on that one. I assume ECT use is also increasing because Medicare relaxed documentation requirements in 2019 while increasing the amount reimbursed.
Clearly Americans have no real idea how much ECT is happening. Most people I speak to cannot believe shocking people into major motor seizures is used on humans in 2020. They have no idea who is receiving it, how much they receive, how closely they receive each treatment, what type of ECT they receive, and what happens to patients after treatment.
Isn’t it weird that after 80 years of use, longitudinal information from routinely tracking cognitive performance, psychiatric symptomatology and neurological outcomes of people with a history of ECT simply isn’t available? Similar outcomes are available for people with a history of treatment for cancer, diabetes, or other medical treatments with nearly a century of use. How many recipients of ECT end up with delayed neurological sequalae of low-voltage electrical injury? According to research, delayed electrical injury usually manifests between 2.5 and 10 years after exposure to electricity. At this point, we’ve no idea how many are impacted. Manufacturers, doctor and mental health organizations repeatedly say that permanent brain damage is “rare.” The reality is, it’s not routinely measured. Why doesn’t psychiatry publish their outcomes publicly so that patients can choose the best hospitals for treatment? Why the shroud of secrecy?
When you think about ECT, it’s not a singular event. It is a series of events—a repetitive brain injury. Dr. Bennett Omalu, neuropathologist who first identified Chronic Traumatic Encephalopathy in American NFL players, sits on the California Traumatic Brain Injury (TBI) Advisory Board at the Department of Rehabilitation. The August 2019 meeting discussed barriers to identify Californians living with acquired brain injury for referral to appropriate rehabilitation and other ABI resources. When they opened the meeting up for public comment, I mentioned that one of the barriers facing people with a history of electroconvulsive therapy (ECT) is that they aren’t routinely automatically referred for comprehensive brain injury assessments. Even when patients experience memory loss, difficultly processing information, and gross cognitive deficits, doctors deny patients access to appropriate assessment. Complicating the issue, when an ECT patient’s persistent complaints garner them a referral for a standard brain scan, damage from repeated exposure to 450 volts of electricity isn’t readily apparent on a standard scan, just like repetitive head injuries in football players.
According to the meeting minutes, “Dr. Bennett Omalu confirmed repetitive head trauma causing functional injuries are not readily seen on standard scans. […] Dr. Omalu also confirmed that neuropathology of electrical injury as well as “the neuropathology of people with a history of electroconvulsive therapy is well recognized as causing extensive functional changes to brain activity and should be considered in the context of both electrical injury and repetitive electrical trauma to the head because natural laws governing electricity aren’t changed based on the intent of medical administration.”
On July 2, 2020 (the 59th anniversary of Ernest Hemingway’s ECT-induced suicide), UK doctors, psychologists, and ECT survivors submitted a letter to the media calling for the immediate suspension of ECT due to the publication of the report mentioned at the beginning of this article. One of the ECT recipients who signed the letter, Dr Sue Cunliffe, was a paediatrician before ECT’s brain damage forced her early retirement. She says,
“As a doctor I was appalled to discover the failings in the regulation of ECT by the Royal College of Psychiatrists, which enables the perpetuation of bad practice and fails to protect patients from harm. The sooner ECT is suspended the better.”
Whose finger is on the pulse of American shock therapy? No one.
If you feel something must be done to audit, standardize, and regulate ECT use, whilst providing comprehensive brain injury assessment and rehabilitation when necessary, please sign my petition. If you think it should be immediately suspended for safety and efficacy testing, what are you doing about it?
On the other hand, if you’ve read this far and concluded that “One Flew Over the Cuckoo’s Nest” is the only thing controversial about ECT use, I’ve got an MMSE test for you.
Hopefully, America can institute immediate changes. It would be an exceptional way to honor Hemingway by the 60th anniversary of his suicide—July 2, 2021.