Background, Research Methods

This study arose from concern that the voices of ECT patients were not being heard. The common complaints of sustained memory loss, cognitive learning difficulties and other effects after a series of ECT, are often met with contempt from the psychiatric community. The medical establishment contends that such effects simply do not occur; they are the result of the underlying depression, or are simply "misunderstandings" by the patients.

In January, the author sent out surveys asking questions about individuals' experiences with ECT. The survey was posted across the Internet in newsgroups, mailing lists, on-line services, bulletin boards and by word of mouth. In addition to posting the survey in mental health related areas, it was sent to several non-mental health newsgroups and mailing lists. (The original survey is available upon request.)

Problems in sampling methods

Obviously, a perfect sampling of ECT recipients is not possible. Confidentiality prevents the non-medical researcher from access to lists of patients, and this was one way of securing responses.

In true representative sampling, the sample must be representative of the target population in order for any inferences to be valid across the entire population. Past ECT studies are no different than this study in that respect. Researchers make claims that ECT causes no permanent damage, based on a sample of perhaps 10 or 20 subjects. These subjects are treated at the same time, in the same hospital, by the same doctor. And because they have continued treatment with the same treatment team, one would assume that they were satisfied with treatment.

The Voices study does not investigate any one patient from a particular doctor, a particular area of the world, or one moment in time. Rather, it looks at a variety of patients who have had ECT treatment in a variety of locations, different doctors, and different time periods. Surveys were received from patients who had undergone ECT in the last four decades, and from the United States, New Zealand, Australia, Canada and the UK.

A study that would truly reflect the honest experiences of ECT patients would involve interviewing thousands of patients across the world. Other research that is desperately needed is a before and after-ECT study of the brain. The American Psychiatric Association is on record as saying it opposes such a study.

A large-scale study of ECT recipients' perceptions about their treatment would be a good use of NIMH funds, and something that should be considered by researchers in future studies.

The actual survey was conducted via the Internet and regular mail between the months of January and April, 1996, with a period of follow-up questions in May and June. Participants were given not only an electronic mail address, but a post office box if they had no access to computers or wanted more anonymity. Additionally, anyone could use one of the anonymous servers on the Internet if confidentiality were crucial. Those servers provide an anonymous identification so that the reviewer could follow up with additional questions, yet not know the identity of the responder.

Analysis

41 replies were received. 23 from females and 18 from males. The average age at time of ECT treatment was 37. For females, the average age was 38.39, for males, 35.22.

75% of the respondents had their ECT treatment in this decade. The remainder had their treatments in the 60s (2%), 70s (12%) and 80s (9.7%).

Among all respondents, 70% felt it had no effect on their depression (or whatever symptoms were being treated). 12% said it had some, or temporary effect on their symptoms. Among females, 65.2% felt it had no positive effect, and among males, 77.7% felt it did no good.

Of all respondents, 17% reported that they felt their ECT treatments helped them. Among females, 21.7% felt it helped them and 11% of males felt it helped.

Memory loss is a major concern among those who have undergone ECT. 83 percent felt that their long-term memory had been affected . This ranged from loss of certain events in their lives, to the inability to remember family members, and in some cases, up to 20 years of memories were erased. Only 17% felt that their long-term memory had not been adversely affected.

"The worst thing that ever happened to me..."
"ECT destroyed my family..."
"Doctor claimed memory problems would vanish in two weeks..."

Of females, 82.6% said long-term memory was affected, and among males, 83.3% reported problems.

"I can't remember my 20-year Marine Corps career...or daughter's birth or childhood..."

Short-term memory appears to have been affected slightly less, or the effects were temporary. In all, 63.4% reported problems with short-term memory loss. 12% said they had no problems at all with short-term memory loss. And 22% said that short-term memory loss was either temporary or minor.

"I couldn't remember people's names, but it gradually came back...with some prompting..."

Half of all respondents reported that they were given no information about ECT and its effects, other than to be told it was effective. The other half were given information in the way of video tapes, pamphlets, books, and detailed discussions with their physician or nurse. Of those, however, several reported that they wish they'd been given more accurate information concerning memory loss and other adverse effects.

"I did have detailed discussions with my doctors before the treatment, but I just couldn't realize how bad the memory loss was going to be. If I had, I'm not sure I would have taken the treatments..."