Campaign against ECT gains traction

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Country music legend Naomi Judd died by suicide on April 30, 2022 after a public struggle to find relief from the deep distress and suicidal intensity that haunted her. Like the late actress Carrie Fisher, Judd had become an outspoken advocate of biopsychiatry, chronicling her experiences in a 2016 memoir River of Time: My Descent into Depression and How I Emerged with Hope. As a celebrity, she accessed the nation’s top psychiatric care centers, yet her pages tell of mostly failed interventions. While her death has been attributed to the “disease of mental illness,” her memoir reads like a saga of harm done in the name of help.

Among the array of treatments Judd documented in River of Time was electroconvulsive therapy (ECT). She was referred for ECT by Dr. Jerrold Rosenbaum, then-head of Massachusetts General’s Department of Psychiatry, after she hadn’t responded to antidepressants, which qualified her as having “treatment-resistant depression.” She writes that Rosenbaum, with whom she had a friendship, promised her that modern ECT was safe and effective, nothing like the film One Flew Over the Cuckoo’s Nest. This narrative, the one most frequently presented to the media and the public, seemed to overcome the singer’s initial reticence and fears of memory loss.

Unlike FisherJudd did not report a positive experience. After 24 sessions, she expressed doubts that the procedure was helping her, and quit. “About a month after the ECT treatments ended,” she wrote, “I could tell that I was slowly falling back into thoughts of suicide.”

Judd was one of thousands of Americans referred to ECT each year. While it was a male character receiving shock in One Flew Over the Cuckoo’s Nest, available data reveal a stark gender divide, both in the US and wherever else it’s administered. Today’s recipients are approximately two-thirds women, disproportionately between the ages of 60 and 65, and mostly white.

Proponents defend the statistics by pointing out that these demographics are more likely to seek and access care, and to receive a diagnosis of depression. University of East London psychology professor and ECT researcher John Read tells Mad in America, “Well, if that’s true, why are women more depressed? And how does electricity address those issues?”

New campaigns demand accountability

In the 1970s, protests against ECT gained some public attention. But since then, even while patient accounts have regularly told of harm done, their voices have been drowned out by the pro-ECT lobby.

ECT survivors and their allies have been calling for a ban for decades, even briefly achieving one in Berkeley, California in 1982. Their protests have featured a simple demand: “Stop shocking our mothers and grandmothers.” And today, 40 years later, the survivor literature is filled with accounts of permanent brain damage, erasure of identity-defining memories, loss of professional skills and livelihoods, and unrecognizable, ruined lives. Yet these voices have been largely silenced in the US.

Survivors like Disa Sacks, a New York physician who lost the ability to practice medicine after receiving ECT, are rarely heard in the public domain. She tells Mad in America of her experience undergoing the procedure in Florida: “It was done in your street clothes. Everyone’s lined up on these dirty gurneys, and then they wheel you into the ‘treatment room.’ They stick a piece of paper in your face with five emojis. ‘How do you feel today?’ You’re supposed to circle which emoji represents how you feel. That’s the extent of the assessment. And then they flip the switch on you.”

“I cannot believe my life,” she says. “I just can’t believe what’s happened to me. I can’t feel anything except anger.”

Protest sign, Coalition against Psychiatric Assault, 2017. Credit: Connie Neil.

“Anytime anyone gets upset or angry about what ECT has done to them, the psychiatrists and those listening blame it on their ‘mental illness,’” California-based survivor and activist Sarah Price Hancock tells Mad in America.

Critical researchers have been similarly smeared in the public sphere, accused of spreading “dangerous misinformation.”

“If you look at it from the psychiatrist’s benevolent perspective—that they are helping people for whom no other alternatives exist, then the psychiatrist will always win,” Hancock says. “Humans in general have this very high regard for physicians. That’s part and parcel for our culture.”

These longstanding cultural factors are among the many reasons that in 2019 Hancock began considering another strategy. “My father is an accountant and taught me, ‘If it’s not measured, it’s not valued.’ I needed to objectively look at numbers, to quantify the scope of the problem at every level, because data is the only thing that’s going to get people’s attention. So I started the #AuditECT campaign.”

She knew it would be a Herculean task to audit her own country with its patchwork, privatized healthcare system, writing in Mad in America in 2020: “It requires funding to submit a FOIA request to Medicare, State Medicaids, and all Private Insurances in every state.” The FDA had rejected her requests for data, as well as subsequent appeals. “Since we can’t get this information easily in America, let’s focus on quantifying where we can get data,” she says.

Hancock exchanged ideas with a leading group of survivors, researchers and campaigners in the UK: Drs. John ReadLucy JohnstoneSue Cunliffe, and Peter Kinderman. The group’s cause had just been bolstered by a 2019 study previously covered by Mad in America, authored by Read, Dr. Laura Marshall (Open University) and leading placebo expert Dr. Irving Kirsch (Harvard University).

The study, published in Ethical Human Psychology and Psychiatry, was the first to rate the quality of all existing randomized double-blind research on ECT. The researchers found only eleven placebo-controlled studies; the most recent dated to 1985. None came close to meeting modern methodological standards. “This body of research is of the lowest quality of any I have seen in my 40-year career,” Read said in a press release.

Especially troubling were the findings regarding women and elders, the primary recipients. For both populations, there was almost no evidence that ECT beat placebo in the short term, and no evidence of long-term benefit. The implications are especially grave, given that women and older people are also particularly susceptible to memory loss caused by the procedure.

The researchers also found no evidence that ECT was beneficial to the three groups of people it is primarily recommended for: severely depressed people, suicidal people, and those said to have “treatment-resistant” depression. Given the well-documented risks of harm, the study’s authors called for an immediate suspension of its use until randomized, double-blind placebo-controlled studies could be conducted using today’s scientific standards.

Shock survivor Dorothy Dundas, center, protesting in New York City. Credit: Dorothy Dundas.
Progress in the UK

The UK campaign gained further momentum in July 2020, when the Cumberlege inquiry made headlines, exposing massive systemic failures in the regulation of drugs and medical devices—particularly those prescribed to women, such as pelvic mesh. The inquiry’s findings felt familiar to those who’d been trying to expose ECT’s harms, and the campaigners saw an opportunity.

A group of 40 recipients, caregivers, professionals, and researchers launched a renewed phase of the campaign. Cunliffe and Johnstone explained the rationale: “Many years of disquiet and protest about ECT has failed to bring about change, but the recent Cumberlege review…suggests a mechanism for by-passing denial and vested interests, bringing unacceptable practice to light, and offering acknowledgement and redress to victims.” The group wrote to their MPs and all relevant government officials asking for an independent review of ECT.

Over the last three years, their work has achieved some results. A number of MPs signed on to a petition. Mind, the UK’s equivalent of the National Alliance on Mental Illness, endorsed the review. Media coverage followed, with a spotlight on ECT’s use on women; Read had filed a Freedom of Information request and discovered that in 2019, two-thirds of the UK’s recipients were women, and 36% were involuntary patients.

And last month, lawmakers on both sides of the aisle went on record in the media supporting a review. MP Nadia Whittome told The Independent, “The fact that it is being used at times on women in a vulnerable position without their consent is particularly alarming.”

Former shadow secretary of state for women and equalities MP Marsha de Cordova said she found the disproportionate use on women “deeply worrying” and was concerned that patients are not being “appropriately warned about the side effects.”

Read expresses cautious optimism about the progress so far: “It might take another year or two, but we might well get a proper independent government inquiry. I think we’re building towards that.”

Cunliffe, speaking about the campaign on the Medical Error Interviews podcast, explained: “If nothing else, at least if patients are being consented properly and they’re monitored for brain damage—if that’s all we achieve, that is a big achievement.”

“The hope is,” she continued, “that if we can really bring changes over in the UK, that it will then enable people from America, Canada, and other countries…to hold their governments accountable.”

“Why don’t we know those answers here?”

Naomi Judd, appearing on Good Morning America in 2016, said, “What I’ve been through is extreme. My final diagnosis was severe depression—treatment-resistant, because they tried me on every single thing they had in their arsenal.”

Her experiences may not have been as unusual as she imagined. At least one-third of Americans who access care for a depression diagnosis are classified as “treatment-resistant,” and some unknown percentage of them are being referred to ECT. Hancock reports that the number of US facilities offering the procedure jumped by 34% following the FDA’s 2018 decision to reclassify it as a Class II device for “treatment-resistance” in adults and children over age 13.

But in the US, there’s no clear national picture of how many people are undergoing the procedure each year, let alone the number of involuntary recipients. “They know those answers in England. Why don’t we know those answers here?” Hancock asks. “We can say how many appendectomies are given at every hospital. We can say the same for any treatment using general anesthesia. But we can’t track ECT?”

For her part, Sacks, the physician who was greatly harmed by the procedure, agrees with the UK campaigners’ goals, and hopes their results can bolster similar efforts in her country. “ECT needs to be banned—until or unless they do real, decent studies that show that it’s both safe and effective. Which they won’t be able to do, because it’s neither.”

 

Editor’s note: This post originally appeared on Mad in America, and is reposted here with permission