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 relatives and 286 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.
Of course, it is important to say some people (20-30%) liked the treatment and felt it helped; the fact that much larger numbers did not does not alter this, and these results are not contradictory. People differ. It’s worth noting that there are some influential psychiatrists and charity leaders who are also ECT recipients themselves, and they have been vocal in their support of ECT. (I don’t know of anyone who feels damaged by ECT having a comparable platform.) I don’t mention this to attack or shame them (I respect that they’re trying to help), but to suggest that maybe this is where the confusion comes from. As another point, it is also worth noting that only a few of those that liked ECT felt the effects lasted longer than a month or two (6-9% of overall sample). (How many people would go through a series of 6-10 general anaesthetics for a month or two of improvements? Again, this should be in the information sheets.)
Our papers give voice to people who, by their own account, were given an extraordinarily one-sided account of ECT to base their decision on, raising some important legal and political issues. They were told it worked, when 60% of people who get ECT say it doesn’t and made everything worse, often much worse. In the next papers, to be published shortly, they tell us what actually happened to them, and the many ways their quality of life was improved or harmed (teaser: some very severe memory problems are often involved).
You might think that this survey will lead to some outrage, but it is certain that the first outrage will come from people who support the use of ECT. They will, it is predicted, try to ignore it and carry on. They will dismiss the work out of hand, discredit it any way they can, mainly by “playing the man, not the ball”, ad hominem—claiming the authors are biased ideologues (“They just hate psychiatry”), strangely left- or right-wing or religious (none of that is true); the journals are rubbish or should have known better.
They will attack the survey and, of course, no study is perfect. Certain critics have already said that the survey is meaningless because it has been circulated via charities that are biased against ECT. But anticipating this, we contacted the largest possible range of mental health organisations, in all continents except Antarctica. For example, all 44 national group members of Mental Health Europe, an independent non-governmental network organization, were emailed and asked to disseminate the survey to their members and other mental health groups in their countries. In the UK, MIND, the UK’s largest mental health charity (certainly not known for any particular opposition to psychiatry), commented on a draft and circulated the survey.
The survey was also disseminated on social media. This might mean it was more exposed to people inclined to be sceptical of ECT. To minimise this, social media posts included phrases like ‘Positive, mixed and neutral experiences all equally valued’. And at the start of the survey, it is made clear that positive experiences are equally valid as negative. What else could we have done? It seems to us these critics are basically saying it is impossible to research ECT at all, except through their control.
Or critics will complain that people who had ECT were weird anyway, and were weird after ECT, so they can’t be believed when they complain. They usually phrase this in terms of “depression biases or alters your memory anyway”, but that is what they are saying (in fact they are actually equating a slightly unusual pattern of responding on a computer-based memory test, to not being able to remember whole years of your life or recognise loved-ones).
They are saying that the voices of 1144 people who experienced ECT are meaningless compared to the opinions of the two or three psychiatrists who marked their own work in the two original ECT studies.
Both papers now released show that relatives, friends, and carers of ECT recipients largely agreed with the recipients’ opinions. This surely makes it nearly impossible to ignore them. It makes it pretty unlikely it is “Just depression speaking”.
And crucially, medical regulators say to warn about “Any risk of serious harm, however unlikely it is to occur”. Does the information given to ECT recipients match up to the quality of the warning in a packet of paracetamol? If hundreds of people who had chemo complained of new side effects, would they be dismissed as a bunch of cranks? You can’t just ignore patients anymore in medicine. People who have chemo who say they develop horrific side effects are treated for them. Why do people who have ECT get dismissed when they say they need memory clinics/physiotherapy/speech therapy?
Our hope for this survey is that those voices are finally heard and accepted, and reasonable psychiatrists, anaesthetists, and nurses no longer feel it is acceptable to mislead patients on the grounds that “If they knew the truth, they might not have the treatment”. I think most doctors do accept that they do not always know best, and would reject that stance. They have themselves been misled by the “official” information about ECT (people who decided that they “just knew” this treatment worked), as has everyone who has had ECT: millions of people and their relatives over several decades.
Our hope is that if reasonable clinicians can accept that our results are in any way representative of people who had ECT, the inescapable truth is that vast numbers of people feel damaged in life-altering ways by a well-intentioned treatment. Perhaps the reasonable majority will be less easily dismissed by those who continue to assure them the studies are there and are bulletproof, when the whole field is so profoundly scant.
They might feel that “don’t ask, don’t listen” isn’t an acceptable policy, and that research following up after treatment has stopped is actually needed. Or that electrical brain injury is highly specialist and most psychiatrists haven’t been trained to investigate it. Maybe reasonable psychiatrists can point out that the pro-ECT group should stop fruitlessly attacking people who want an actual evidence base, and set about actually providing one.
And maybe we can start to talk about rehabilitation for vast numbers of people, and legal redress/compensation (admittedly, that may involve annoying adverts “Were you damaged by ECT?”).
