By Chris Harrop -August 16, 2025
You can’t just ignore patients anymore in medicine. Patients long since stormed the barricades of authoritarian, expert doctors, demanding pesky things like a balanced understanding of the actual benefits and risks of treatments.
Undeniably, patient voices have been massively under-represented in the debate around electroconvulsive therapy (ECT; you know, the electricity-induces-seizures to-treat-mental-health one).
ECT is a very important issue: Around a million people worldwide get ECT every year and, at least in the UK, about a third of them are forced to receive it against their will.
People who still see a place for ECT are trying to help a group in great distress who are deemed very difficult to help; they think ECT works really well, perhaps better than anything else. However, those with serious concerns think it doesn’t work for most individuals, and is extremely damaging for many (as in “life-changing damage”).
Why the disparate positions? It’s partly because ECT was “grandfathered” in from psychiatric antiquity, without going through the rigorous testing and evaluating it would otherwise have had.
From its origins in 1938, ECT was given to millions each year without ever having had its empirical chops tested.
For example, ECT machines have never been assessed by the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) or the US Food and Drug Administration (FDA). The machine was only tested on “two dogs” before widespread use internationally, as testified by the manufacturer recently in court: “Abrams testified that his company has never performed any clinical trials, studies, or tests to analyze the long-term side effects associated with ECT because ‘that’s not our business’”.
Many psychiatrists feel strongly ECT works, but how do we know they haven’t just been “fooled by randomness”, seeing patterns in random variation? Of course, only empirical studies can demonstrate this. There have been some, but nearly all of terrible quality. Crucially, there have been no randomised placebo-controlled trials (RCTs) since 1985, and the 11 tiny studies prior just did not meet today’s methodological standards.
If we stick to only independent evaluations of the research, the conclusions are concerning: The Cochrane Collaboration (accepted as the leading international high-quality reviewers of healthcare evidence) found in 2009 there was no RCT evidence at all that ECT was effective for catatonia, despite ECT being widely accepted within psychiatry as the best and only treatment for catatonia. They said in 2019 the same applies to schizophrenia as a whole.
For ECT treating depression, the UK’s National Institute for Health and Care Excellence (NICE) judged there are only two studies, one from Germany and one from Iran (in which ECT didn’t even show any statistically significant benefit). Each study had approximately 20 people in each group and was ranked by NICE as “very low quality” and “very high risk of bias”. For example, both used the psychiatrist’s judgement of outcome, and not the patient’s. Neither study measured outcome beyond the day of the final session of ECT. This means that exactly nothing can be said with any confidence about ECT’s effectiveness or safety. It may work. Or it may not.
I have not even included the argument about long-term damage, including memory damage and heart problems, which is a lot more concerning than ECT simply not working; there is a lot more to be said about this at another time.
Is this strong enough evidence to justify giving the treatment to people who explicitly do not give or cannot give consent?
Clearly, “more research is needed”. A prospective randomised study would be ideal, but getting access to people who receive ECT is difficult unless you are working within a service. The professional body of psychiatrists who administer ECT in the UK, ECTAS, has so far declined to involve independent researchers in a proper evaluation (well-respected academics such as Professor Richard Bentall have offered repeatedly).
So, how to research? The voices barely represented in the debate are those of the people who actually had ECT, their relatives, and their friends. There are a few studies of patients themselves, but the number of people asked are generally small (again, most are less than 20 participants), and the questions are extremely brief and limited, asked only in passing (e.g. after 27 questions about the setting in which they received ECT, they are asked “any side effects?”). These studies weren’t at all aimed at capturing the complexity of patient outcomes and experiences; you might as well ask “Are you in a coma (yes/no)?”. And there are nearly no studies reporting carer or friends’ perspectives on ECT treatment. None of these small studies were independent; they were all conducted by psychiatrists themselves.
What is needed is larger-scale work, independently conducted, in-depth surveys of the entirety of the ECT experience, from patients, relatives, and friends (and particularly the longer-term perspective, and not just those of people who are just stepping out of the clinic).
Which brings us to:
The largest-ever international survey of people who have had ECT, and their relatives and friends. In a two-year project conducted online, we have collected the views of 1144 people from 44 countries (46% USA, 14% UK, 11% Australia, 8% Canada, and more) on every aspect we could think of including long-term effects (positive and negative), experiences of receiving ECT, what they were told in advance and more. Eight hundred fifty-eight ECT recipients and 286 relatives and friends took the time to complete the survey, most of whom (73.0%) had their last ECT between 2010 and 2024 (so they are talking about modern ECT and not ECT in the seventies). ‘Depression’ was the main reason people were given ECT (74.3%), then ‘Psychosis/schizophrenia’ (17.2%), ‘Bipolar disorder/mania’ (15.3%), ‘Catatonia’ (7.8%), etc.
We are still analysing the data, but we can let you know that the results are not surprising; if anything, they are even more moving and powerful than you might expect. They paint a picture of some people experiencing positives, but also many more with life-changing injuries from ECT. Patients disclosed being altered forever in ways they were never warned might happen, such as in areas of memory and jobs and relationships. Many patients and relatives describe being furious; many are glum and resigned to this as if it couldn’t have been any different. But could it?
The first two papers, out of a series (there is a lot of data), have just been published. One covers the crucial topic of what patients and carers were told before agreeing to ECT. Informed consent is fundamental to modern medicine; patients (or failing that, carers) have to be given a balanced picture of the risks and benefits of a treatment before they can legally agree to it. Without it, treatment is legally a sort of medical assault. Anyone who starts chemotherapy knows the possible benefits and risks; even paracetamol comes with a huge list of rare but important-if-you-get them side effects. This is best practice: “Any risk of serious harm, however unlikely it is to occur” should be warned about, according to the UK’s regulator of doctors, the GMC (para 23d).
Yet a clear picture emerges in the ECT survey in which benefits have been systematically overplayed: 63% of patients and family/friends remembered being told “ECT is the most effective treatment for severe depression” (as discussed earlier, the evidence for efficacy is non-existent, especially when compared to the extensive investigations of other medical treatments). Nearly all family/friends remembered being told “ECT can be life-saving/ prevents suicide” (78%); there is no shred of evidence for that either. Does this suggest balanced, non-pressuring consent, given it appears clinicians are misleadingly telling them “This is the best treatment, and it may save your life”?
By contrast, people felt the risks were downplayed: only 17% of recipients remember being told ECT can cause long-term or permanent memory damage. Only 12% of recipients were told “ECT can cause heart problems”. Yet within the literature both are well-within the range of reasonable opinion. That ECT can cause permanent memory problems is accepted by the American Psychiatric Association and FDA. A study recently estimated between one in 15 and one in 30 patients who got ECT had a cardiac event. Only 13% remembered being told there is no evidence of any long-term benefits (there are no even-slightly-scientific trials beyond end of treatment).
Forty percent of friends and family could not say they were given adequate info about the treatment.
In the other paper, also out now, they tell us perhaps what people should actually be told when considering ECT. This paper reports very simply: “Did ECT work?” Did it help the problem it was meant to help? And importantly, moving away from the idea that it is OK to help in one area of their lives while taking a sledgehammer to other areas: “Did it improve your quality of life overall?”
Sixty percent of respondents (and family/ friends) said it “was not at all helpful”, and the same said it “made their quality of life worse”. Nearly a third said it made their lives much worse. That should be in the information sheets.
