Patients Are Being Misinformed About Electroconvulsive Therapy

To the surprise of many people, electroconvulsive therapy (ECT) is still used. In England, about 2,500 people every year undergo the procedure, which involves about ten electric shocks under general anaesthesia, to produce a seizure, over several weeks. Nobody knows how many people get ECT in the USA as there are no federal records. We do know, however, that there is massive variation between, and within, countries. Our recent audit in England found a 47-fold difference between the highest using and lowest using regions, suggesting that who gets ECT is a geographic lottery, determined by the personal opinions of local psychiatrists.

In a previous post, I summarised my 2019 review of the ECT research literature, with Professor Kirsch, of Harvard Medical School, showing that there is no convincing evidence that ECT outperforms placebo in the short-term and no evidence at all that it has any long-term benefits or prevents suicide. We also summarised the evidence that it causes persistent memory loss for between 12 and 55 percent of patients.

With such a challenging risk-benefit ratio, one would assume that psychiatrists are particularly careful to make absolutely sure that potential recipients and their families are given comprehensive, evidence-based information about the pros and cons. The principle of informed consent is a cornerstone of the codes of ethics of all health professionals.

Nearly 20 years ago, however, in 2003, the UK’s National Institute for Health and Care Excellence found the information provided to patients to be totally inadequate. It therefore recommended:

"National information leaflets should be developed through consultation with appropriate professional and user organisations to enable individuals and their carers/advocates to make an informed decision regarding the appropriateness of ECT for their circumstances. The leaflets should be evidence based, and include information about the risks of ECT and availability of alternative treatments [...]."

ECT Leaflets Omit Information and Include Inaccurate Statements

Our audit, published today,¹ finds that NHS mental health services and the Royal College of Psychiatrists have ignored this recommendation for nearly two decades.

Freedom of Information Act requests were sent to 51 NHS Trusts for a copy of their ECT information leaflet. Thirty-six (71 percent) provided leaflets. The number of accurate pieces of information, from a possible 29, ranged from four to 20, with a mean of 12.8.

The most commonly omitted information was:

• there are different forms of ECT, with different risks of memory loss (mentioned by just 14 trusts);
• psychological therapy should be tried first (12 Trusts);
• cardiovascular side effects (6);
• lack of long-term benefits (6);
• patients’ right to take 24 hours to consider giving consent (1);
• memory loss is higher in women and older people (0).

The number of inaccurate statements averaged 5.8, out of 11, ranging from two to nine.

The most common inaccurate statements included:

• ECT corrects biological deficits (28 Trusts);
• exaggerated claims of very low mortality risk (28);
• minimization of memory loss (23);
• claims that ECT saves lives (22);
• exaggerated claims of very high improvement rates, with no mention that placebo produces similar outcomes (19).

The Royal College of Psychiatrists’ document includes seven inaccurate statements. The only document not to include any false statements was by the mental health charity Mind.

In the USA, the FDA requires that all ECT machines have a sign next to them saying that there is no evidence of long-term benefit, but most of the UK information leaflets don’t mention that.

More than half of the leaflets are still reiterating the long-standing myth that ECT prevents suicide, despite the absence of research evidence. A recent study found that 14,810 ECT patients were 5.8 times more likely to have killed themselves in the year after treatment than 58,369 controls; and that after controlling for confounding variables, there was no significant difference between the two groups.

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Many of the same gaps and misleading statements can be found in the information provided for patients by the American Psychiatric Association.

A Call for an Independent Review of ECT in the UK

In our media release, lead author, Chris Harrop, commented:

“The Royal College of Psychiatrists have failed to heed 2003 NICE calls for evidence-based information leaflets, and we therefore recommend that the task now be delegated to an independent body involving multidisciplinary professionals, service users, researchers, and lawyers. Meanwhile mental health services must urgently stop misleading patients, by either amending their own leaflets, or adopting the Mind leaflet.”

In UK media coverage of the audit, a Mind spokesperson said: "The decision to use ECT should never be taken lightly. The importance of being able to easily access accurate information before you choose to go through any mental health treatment cannot be overstated and this is even more crucial for treatments with potential known, lasting side effects like ECT."

The newspaper article reported on personal examples, including:

Jacqui is now part of a group legal action being co-ordinated by Freeths solicitors in Nottingham for people who claim they never gave informed consent to ECT and are seeking compensation for the brain damage they say they suffered. Freeths solicitor Phillip McGough says they already have 12 complainants — one of their newest cases is ‘Chloe’, a 20-year-old from Newcastle who had a breakdown at 15 and was diagnosed by a psychiatrist with depression. Aged just 17, she was referred for 26 sessions of ECT in 2018 which she says have caused epilepsy and permanent memory loss.

Our audit concluded: “Information leaflets about ECT comply neither with National Institute of Clinical health and Excellence (NICE) recommendations nor the principle of informed consent. Patients are being misled about the risks they are taking and the limited nature of ECT’s benefits.”

The audit will be submitted to the Minister of Health and Social Care in support of a call for “an independent review into the practice of ECT in the UK,” by 40 ECT experts, backed by Mind, The Royal College of Nursing, Headway (the brain injury charity), the Association of Clinical Psychologists, and multiple cross-party MPs. It will also be sent to all NHS mental health services, asking what changes they will be making to ensure they will comply with the principle of informed consent in the future.