A large exploratory survey of electroconvulsive therapy recipients, family members and friends: what information do they recall being given?

The right to informed consent is a core ethical principle. Recent audits of patient information leaflets about electroconvulsive therapy (ECT), in Australia, England, Northern Ireland, Scotland and Wales, suggest that this principle is often not implemented, with efficacy being exaggerated and risks minimised. In the current study a convenience sample of 858 ECT recipients and 286 family members and friends, from 44 countries, responded to an online survey about their experiences of ECT, including the information they recall being given to them before ECT. Most (59%) of the ECT recipients reported that they had not been given 'adequate information' and a further 17% were 'not sure'. For example, 63% of recipients recall being told that 'ECT can cause temporary memory problems', but only 17% that 'ECT can cause long-term or permanent memory problems, 12% that 'ECT can cause heart problems' and 28% that there are 'Risks from repeated general anaesthesia'. There were higher levels of recalling being told about definite benefits, even though some of these benefits are disputed. When asked to consider a list of items of misinformation, many recipients and relatives reported being told 'Depression is caused by a chemical imbalance in the brain' (58% and 53%, respectively) and 'ECT corrects chemical imbalance or other brain abnormality' (42% and 41%). Study limitations include potential sampling issues (eg, self-selection bias, snowball sampling bias, or other barriers to representativeness due to convenience sampling or network-based recruitment), as well as potential recall bias among survey respondents (last ECT treatment was between 1958 and 2024; average=2012.5). Nevertheless, these findings, in conjunction with previous studies, suggest an urgent need for greater efforts to ensure that patients and families are provided with comprehensive, balanced, evidence-based information when deciding whether to have ECT.