- An international survey of ECT recipients found that over half felt they weren't given adequate information about the treatment beforehand.
- Many patients remember being told that ECT was safe and that it was their last treatment option.
- ECT is recognized by several medical societies as being an effective treatment for severe mental illness.
Patients and family members of those who have undergone electroconvulsive therapy (ECT) reported a mixed bag of information being given beforehand.
According to a survey of 858 ECT recipients, 59% felt they weren't given adequate information about ECT before receiving the treatment for severe mental illness. Another 17% said they weren't sure, reported John Read, PhD, of the University of East London, and colleagues.
Among the 286 family members and friends who were also surveyed, 27.4% and 12.3% said they weren't given enough information or weren't sure if they were, respectively.
"Our international survey, the largest ever conducted, seems to confirm audits of ECT leaflets, in Australia and the U.K., which found that the principle of informed consent is being consistently breached," the group wrote in the Journal of Medical Ethics.
"The findings are also consistent with findings that most users of antidepressants and antipsychotics are not fully informed about most of their adverse effects," they added.
Developed in the late 1930s, ECT involves delivering brief electrical pulses to the brain while under general anesthesia and a muscle relaxant, typically two or three times a week for a total of six to 12 treatments, depending on illness severity. Electrodes are attached to the patient's scalp to deliver a brief and controlled series of electrical pulses inducing a seizure in the brain. The seizure lasts about 1 minute, and then the patient awakens about 5 to 10 minutes later.
The procedure is typically reserved for patients with more severe psychiatric conditions, like severe depression and bipolar disorder, that haven't responded to other treatments.
ECT is recognized by several medical societies, including the American Psychiatric Association (APA), as being an effective treatment for severe mental illness. However, the APA notes that ECT doesn't prevent a return of illness in the future and that most ECT patients will need to continue with some sort of maintenance treatment, like medication, psychotherapy, or ongoing ECT treatments.
APA emphasizes informed consent as part of the process prior to ECT, in addition to a thorough psychiatric assessment, a medical examination, and sometimes a basic blood test and an electrocardiogram.
While some patients can experience longer-term memory problems, most cases of ECT-associated memory loss are temporary and improve within a couple of months.
When asked about adverse effects, 63.4% of ECT recipients said they were informed the procedure can cause temporary memory problems, and 17.2% said they were told it can cause long-term or permanent memory problems. About 5% said they were told women are more likely to have memory problems.
Many said they were told there are no long-term adverse effects and that it was "extremely safe" and "safer than medication." In recounting discussion with their doctors and nurses, several patients said the word "harmless" was used.
Also, 27.9% said they were informed of risks from repeated general anesthesia, and 11.6% said they were told ECT can cause heart problems.
As for general information about the treatment, most (58.3%) said they were told depression is caused by a chemical imbalance in the brain, and many (42.3%) were told ECT corrects this chemical imbalance or another brain abnormality. One patient recounted being told ECT would "reboot my brain like a computer," while another was told ECT would "reset the brain electrically and allow it to function normally."
Many ECT patients said they were told this treatment was a last resort and that they had no other options left. One person said they were told "it is the last solution," and another said it was "the only choice for treatment-resistant depression."
Most also recounted being told ECT can be life-saving or prevent suicide (68.2%) and that ECT is the most effective treatment for severe depression (63.3%). A few said their doctors or nurses called ECT a "miracle cure."
About 12% said they were told there is no evidence ECT has any long-term benefits. A fifth said they were told about legal rights in relation to ECT.
The survey was disseminated from January to September 2024. Respondents spanned 44 countries, but most were from the U.S. and were white (87%) and female (73%).
Average age at last ECT was 41.9 but ranged from 12 to 87. About three-quarters of ECT recipients had their last ECT between 2010 and 2024; just 1.7% had it between 1950 and 1969.
Depression was the most common reason for ECT (74.3%), followed by psychosis or schizophrenia (17.2%), bipolar disorder (15.3%), catatonia (7.8%), and an unspecified "other" reason (12.8%). Nearly 6% didn't know why they had it.
Read and co-authors pointed out some limitations to the survey, including that all responses were dependent on memory. Since ECT can impact memory, people who reported being "unsure" about if they were told certain information doesn't necessarily mean they weren't provided it, the researchers said.
Disclosures
Read reported being a paid expert witness in several ECT legal cases. No other disclosures were reported.
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