Your mum can’t stop crying. She rarely bothers to eat sometimes, or even get up. She’s struggled since your dad died, and has gone into an extremely despondent mood. She talks about wanting to join him still, and not wanting to be a burden. You try to see her as much as you can, but it is hard, living far away – and the medicines don’t seem to be helping. The nice doctor recommends ECT: “Yes, the electricity one. But it’s not like in One Flew over the Cuckoo’s nest anymore.”
What do you do?
Anything that would work, presumably. But how to know what works?
By the way, she’s now refusing most medicines and expressly doesn’t want ECT. She cries at the suggestion of it: “You are NOT plugging me into the mains, and I DON’T want any seizures.” The doctor says “Yes, well, she would say that, but we can give ECT against her wishes with your consent. She’s so severely depressed we can consider her incapable of consenting”.
It is impossible to get clarity from the internet. (I accept you may have to try that to convince yourself, but, for instance, some sites say “ECT is great for people who can’t take medication such as pregnant people, or older people”. Other sites say it should be particularly avoided for these groups). Whose information can you trust?
The best information is usually from the National Institute of Clinical Excellence (NICE), who produce the official guidance for doctors and patients about the best possible treatment given the current evidence-base. NICE see ECT as a treatment of last resort, after all others haven’t worked. “For severe depression, use only if it is life-threatening and when a rapid response is required, or when other treatments have failed.” Or “For moderate depression, only consider when they haven’t responded to multiple medications or psychological treatments.”
You might also find that, yes, it is indeed true that ECT can be given against a person’s wishes if they are deemed to lack capacity to give or withhold consent for the treatment’, but in those circumstances, the delivery of ECT as an intervention is constrained by some well-thought-out legislation. The law insists all other avenues are tried before enforced electric shocks are given. ECT can only be given to people deemed incapable of giving informed consent with the approval of a Second Opinion Appointed Doctor (known as a “SOAD”; Department of Health and Ministry of Justice, 2009). The SOAD has to consult at least 2 professionals who are associated with the person’s care (one has to be a nurse and the other cannot be a nurse or a doctor).
So (to go back to our example with your mum), you ask your doctor “That’s a last resort, right? Shouldn’t we try psychological therapy or a social intervention?”
What they would say depends mostly on where you live.
In a great many places in England, they would say they wouldn’t (or hadn’t), and they didn’t think it was worth it.
We know that because of our recent study. As Mental Health professionals working in the NHS we worried intensely that the legal structure around ECT wasn’t being followed. We worried that while patients unquestionably tried medication before ECT, they were much less likely to get psychological therapy. We know how under-resourced psychological therapies are in the NHS, and under-prioritised compared to medication.
So we asked all 56 Mental Health trusts in England (using Freedom of Information Act requests) whether they were following NICE guidelines about ECT being a treatment of last resort. We also asked about other things such as how they were monitoring for signs of progress, and of brain damage and cognitive dysfunction. 57% of NHS Trusts replied. (We did write to 4 private sector healthcare providers, but they pointed out they were not bound by the terms of the Freedom of Information Act and didn’t need to respond. They effectively waved a pair of electronic fingers at our faces across the email. We were surprised to discover that non-NHS providers of mental health services are not subject to the same scrutiny that statutory providers are bound by)
Firstly, we wondered, how often is ECT actually given? We found that between 2,100 and 2,700 people a year get it. However, we also found that Trusts vary widely in their use of ECT: we found a huge 12-fold difference per 100,000 between the most ECT-using Trusts and the lowest. This suggests whether your mum gets ECT depends largely on where she lives, and the particular preferences of that psychiatrist. Does that reassure you it is the right treatment or leave you even more worried that the advice you’ve been given reflects the preferences and biases of the psychiatrist?
We were also curious to find out, who gets ECT? Consistent with what other researchers have found, we discovered that it is mostly women (66%) and people over 60 (56%) who were treated with ECT. For some reason, to me this means mostly mums. Grandmothers. My mum or your mum. ECT has always been given mostly to females rather than males (a Department of Health study in 2003 found that 70% of those receiving ECT are female).
NICE guidelines say that the risks are greater for older people in terms of cognitive impairment after ECT, and women are also more susceptible to memory loss after ECT, so it is even more important that other evidence-based treatments are offered before ECT is even considered. But we found that often this isn’t the case. From the Trusts who did respond to our FOI request, we discovered that 27% of the people who were given ECT in 2015 were not offered any psychological therapy before getting ECT. This runs contrary to the explicit guidelines that ECT should be a treatment of last resort. We did find some variability between Trusts: In 2 Trusts nobody who got ECT had been offered psychology; by contrast in 2 other Trusts everyone who got ECT had been offered psychology.
Worryingly, we found that most Trusts do not keep records of whether people are offered psychological therapy before being given ECT. Only 18% of Trusts that were asked answered that question. 7 Trusts said they didn’t keep a record of this. Another 11 Trusts said that it would be too time-consuming to collate this information within a FOI request. This worries me because we all know that when no data are collected or targets set, nothing tends to happen. There are so many other targets in the NHS, those will be the priority.
We found that more than a third of all ECT is given without the consent of the person getting it. 38% of people from 22 Trusts had been given ECT without their consent, ranging from 15.3% (Surrey & Borders) to 72.2% (Hertfordshire) and 100% (Black Country). As I described above, the Mental Health Act stipulates that consent can be given on their behalf by an outside professional (the SOAD) who has to consult with 2 professionals involved with their care. 30% of Trusts who answered this question did not comply with this requirement: they used professions expressly not allowed by the Mental Health Act such as other doctors. Does this mean that they were failing to comply with the requirements of the Act? Were they were breaking the law?
Let’s go back to your predicament in thinking about what’s best for your mum. Inevitably, one of your considerations will be about whether or not there is evidence that the intervention will work. You’ll want to know what outcome data the psychiatrist can share with you. “You have good reason to think it works?” you ask tentatively. The doctor says breezily “Sure. I know a patient or two it has really worked for”. “How many have you done? Can I see your data and outcomes?” Don’t be too surprised if you don’t get a satisfactory answer to this eminently reasonable request.
In our study, we asked Trusts to share with us their outcome data. We found that only 4 Trusts could send us any actual data. We found this extremely worrying; at best it meant most Trusts do not pool these data, and therefore are not able to review whether their use of ECT is effective. At worst it is likely that the doctors doing the ECT are not collecting any outcome data at all. Because ECT in most Trusts is done by one or two specialist doctors, data should be easy to collate – if they were collecting any. A suspicious mind might wonder if the reason outcome data is not routinely gathered is because it might cast doubt on the efficacy of the treatment. For such an invasive and controversial treatment, it seems astounding that Trusts are not ensuring that they gather, collate and share any data they have that could provide a rationale for using such an intervention.
As a psychologist, I am encouraged to use questionnaires every session (and the client fills these in, not me). This helps provide a more objective measure, to see if people are getting better but also whether the client feels they are getting on well with me and feel understood. This is so I can learn and improve. To fail to monitor an entire 12 session treatment package even at the end is bizarre, if not extremely negligent.
Other Trusts told us they did have data but not to hand. We asked what data they collected. It turns out that for many Trusts, even the data they say they collect is poor. First, all of the assessments reported to our study were done by the clinician who decided to use ECT; none were independent or client-rated. Second, most Trusts (70%) used the unforgivably brief (3 questions) Clinical Global Impressions Scale (CGI). Incredibly, this is all that is recommended in the ECT accreditation service (ECTAS) guidelines from the Royal College of Psychiatrists. To my mind, this is seriously negligent. 3 questions at the start of, and 3 questions at the end of, the entire 12-session package?
56% of Trusts used a more appropriate validated psychometric measure of depression, usually just the one. 4 Trusts used no measures at all, just “clinical judgement”. From those 4, the success rates (as judged by the ECT-enthusiast psychiatrists themselves) look comically suspicious: 80–90%, 95–100%, and 100%. Compare this to what we know about severe and moderate depression, these just seem extremely unlikely. Importantly, these figures, dubious as they are, relate only to the claimed immediate impact of the electric shocks.
You might also want to know about the longer-term effects. “I’d be reluctant to agree to such a traumatic treatment for her unless the effects lasted for a year or two. I mean, why put her through that if all the benefit has gone in 3 months and we are back here again?”
We also asked Trusts about how they measure the effect of ECT over the medium or longer term. We found that not a single Trust collated any data on whether any improvement continued beyond treatment, once the fortnightly-induced convulsions had been stopped. Not one. And the guidelines from the Royal College of Psychiatrists (ECTAS) do not require anyone to collect data beyond the day of the last treatment. Surprised?
“Well, maybe if you haven’t got data yourself, maybe the published literature on ECT shows it is really effective? You know, the high-quality studies?”
Of course, it’s a large field, but here’s a good recent review. Interpretation of a big body of literature is going to be subject to biases but let me just summarise this with a fact: There has not been a single study of ECT compared to placebo for over thirty years, despite the fact that none of the 10 that were conducted prior to 1986 found ECT to be any better than placebo beyond the end of treatment, and five found no benefit even during the treatment period. A more recent scholarly review out this week shows this again, and also that the fairly dreadful quality of the limited old literature means that unlike in most areas of medicine, ECT versus placebo has not ever been properly tested. There is no good evidence.
“OK. Well, maybe I don’t need evidence. At least, as long as it’s not actually harmful. Are there any risks of my mum being permanently damaged?” [by electricity-through-the-brain induced convulsions?] “Can I see your data on long-term cognitive impairment?”
Only 4 Trusts could give us actual data on adverse events.
11 of 32 Trusts (34%) could not even pretend to answer this question honestly, because they could not tell us what measures, if any, were in use to assess adverse effects. This is completely against National Institute of Clinical Excellence (2017) guidelines which state: “Cognitive function should be monitored on an ongoing basis, and at a minimum at the end of each course of treatment” [but apparently not months or years after treatment – shame on you, NICE].
14 Trusts could in theory answer because they told us they at least used a proper measure of cognitive functioning: the MMSE(8), the Montreal Cognitive Assessment Measure (5), the Addenbrookes Cognitive Examination (2), and two used the 6-item Cognitive Impairment Test [6CIT]. The other seven Trusts offered more general comments such as ‘short term memory is monitored along with physical health assessment’. None of the measurements were independent of the treating doctor. Measures and assessments were administered regularly during treatment, but none were administered beyond the end of treatment.
Not a single Trust followed-up to make sure there weren’t adverse events once the final treatment session had been finished, and after the old lady was helped out of the clinic.
And again, the accreditation guidelines from the Royal College of Psychiatrists (ECTAS) do not ask anyone to collect data beyond the day of the last treatment.
Astoundingly, this is despite the fact that there is clear evidence of memory dysfunction which is ‘marked and persistent’ for at least one in eight people who have ECT (Sackeim et al., 2007) and probably far more (Rose et al., 2003).
1 in 8? For how many medical procedures is a 1 in 8 risk of permanent brain damage considered acceptable? For your mother?
What sort of medical treatment doesn’t monitor for that sort of risk? Not a single Trust watches out for this? The body that “accredits” ECT doesn’t even recommend looking out for brain damage, in fact, doesn’t mention it once in its annual reports? For the Royal College of Psychiatrists adverse events literally don’t exist. (This echoes how it took several years and endless pressure before the Royal College of Psychiatrists backtracked and admitted that there were withdrawal effects from anti-depressants and other addictive psychiatric medications.)
There is greater scrutiny of my NHS car-parking expenses than these doctors putting electricity through people to make them have seizures.
So what can you conclude for your poor mum? Or for the two-to-three thousand every year who get ECT? Obviously, you would do anything that works and is safe; but we are not remotely able to say that ECT works or is safe. The huge variation from one locality to another suggests ECT is the preferred treatment of a dwindling number of psychiatrists who believe in it regardless. There is stronger evidence of at least a 1 in 8 chance of permanent life-altering brain-damage than any benefit beyond treatment. And ECTAS, the official accreditation body, seems to be designed so it can pretend ECT works really well while carefully avoiding measuring whether it actually works at all, and certainly avoiding looking at whether it causes brain damage. ECTAS is a missed opportunity to produce rigorous evidence.
My own view is ECT should be treated as an experimental, unproven procedure (because it is) and stopped nationally pending rigorous controlled research which monitors whether it works better than placebo 6 months or years after the final session has stopped. Also, as with any other treatment, we can’t consider efficacy without also investigating any harm the treatment might cause. We need to discuss whether the many replicated findings of brain-damage and cognitive impairment are enough grounds to ban it completely (clue: of course they are. Particularly given nearly 40% are non-consenting. We need to campaign to make sure this happens). I see the current use of ECT as the pet treatment of a few psychiatrists as a scandal akin to doctors still trying to use blood-letting on people because they just happen to favour it.
The most recent ECTAS reports confirm our finding that ECT is mostly given to women and older people. I was struck that 24 people over 80 and 3 over 90 were given it. If women and old people are more prone to depression, then maybe treatments that addressed the social causes might be needed. There is extensive evidence that people who are depressed have experienced more traumatic life events, are more isolated, more likely to experience financial problems and bereavement, and as a consequence suffer particular thinking styles. ECT has no answer to loneliness and poverty, or cognitive styles, whereas psychological and social treatments do. The evidence-base for psychological treatments is also much stronger; all good reasons to try them first as NICE recommend. They are also a lot less unpleasant and don’t cause brain-damage.
That’s what I’d be doing for my mum – how about you?
Thanks to Jim Geekie and John Read for comments on an earlier draft of this blog. All views are my own.
Read, J., Kirsch, I., & McGrath, L. (2020). Electroconvulsive Therapy for Depression: A Review of the Quality of ECT versus Sham ECT Trials and Meta-Analyses. Ethical Human Psychology and Psychiatry, Vol 21, Issue 2, DOI:10.1891/EHPP-D-19-00014
Rose, D., Wykes, T., Leese, J., Bindmann, J., & Fleischmann, P. (2003). Patients’ perspectives of electroconvulsive therapy: Systematic review. British Medical Journal, 326, 1363–1366. https://doi.org/10.1136/bmj.326.7403.1363
Sackeim, H., Prudic, J., Fuller, R., Keilp, J., Lavori, P., & Olfson, M. (2007). The cognitive effects of ECT in community settings. Neuropsychopharmocology, 32, 244–254. https://doi.org/10.1038/sj.npp.1301180