Voices From Within: A Study of ECT and Patient Perceptions

Abstract:

This study examines ECT (electroconvulsive therapy) patients' own perceptions concerning their treatment and after effects. Research concerning memory loss and cognitive problems as a result of ECT has focused on researchers' ideas about what is important in assessing memory loss and cognitive damage. This study is an attempt to give ECT patients and survivors a voice of their own, from the perspective of those who have experienced the treatment.  

Contents

Introduction
Review of the Literature
Background, Research Methods
Analysis
Conclusions

Introduction

This study resulted from repeated patient complaints that memory deficits and cognitive disturbances following ECT are not being acknowledged by doctors and researchers. The study contains the viewpoints of 41 subjects who have undergone ECT treatments.

Failure to record patient views is a fundamental flaw in all previous research. Patient views are dismissed by many practitioners, who contend the patients themselves do not understand true memory deficits, or by claiming that the memory problems result from underlying depression, and not ECT. From the perspective of many patients, it is those experts who do not fully understand memory and how severely it can be affected by ECT.

This study demands attention by those experts who use ECT in their psychiatric practice. One of the most important findings in this study is that patients who feel they have been damaged by ECT do not return to the doctor who performed ECT and discuss the problem. Instead, feeling that they have suffered side effects that were unanticipated, they simply go on to another doctor, or leave psychiatric treatment altogether. This is not to be seen as an indictment of the patient. It's quite normal that someone who feels s/he has been misled or even lied to would not return to the offending doctor, particularly when the patient feels s/he's been abused.

Thus, when ECT practitioners claim their patients don't complain, they may be telling the truth, based on their lack of follow-up with patients who have left their care. The patients who have had disastrous experiences never return to inform them, and therefore, they never know.

Additionally, when patients do try to discuss these problems with the doctor, their feelings are often dismissed as being mistaken or a misunderstanding.

This study is an attempt to identify areas of concern among ECT patients, and to give previously unheard voices a chance to speak out. It is also intended to make clear that there are effects that the established ECT community does not want to acknowledge.

Review of the Literature

The literature concerning effects of ECT, including possible brain damage, is biased in favor of ECT. At a recent conference comprised of mental health researchers (45th National Conference on Mental Health Statistics, held in May 1996 in Washington, DC), this concern was posed to researchers in the field. Researchers from universities and the National Institute for Mental Health acknowledged the lack of unbiased research in the field of electroconvulsive therapy, and stressed the need for future independent research.

A full listing, with abstracts, of the literature reviewed is available upon request.

The author reviewed over 500 articles and abstracts from 1966 to present on ECT using Medline.

A current trend in ECT research is evaluating the use of various drugs and herbal substances along with ECT, in attempts to reduce memory loss.

Of 50 articles on ECT since 1986 that discussed memory and cognitive deficits, only eight actually addressed the issue of memory loss. One article reviewed the benefits on memory of unilateral vs. bilateral techniques. Six discussed the varying brain and chemical changes that occur during ECT. Four evaluated trends in ECT over the past decades. The remaining 62 percent (31 articles) focused on using different chemicals (caffeine, calcium channel blockers, ginseng, and so on) during the treatment to reduce memory loss and other negative side effects. Additionally, of those 50 journal articles, 15 were rat and mice studies.

Of those eight that reviewed memory loss and cognitive deficits, only one was based on the presumption that such problems do, in fact, exist. (Durr, 1995) This was from a nursing journal, suggesting that those who deal the most with patients on a continued basis accept that disturbances do occur, despite practitioners' continued assertions to the contrary.

Two of the articles concluded that ECT treatments actually improved memory and cognitive functioning by eliminating the underlying depression (Frith, et al, 1987; Reid, 1993) The remaining articles tested ECT recipients against normal controls and depressed patients, concluding that any memory and cognitive problems were temporary. One study compared 15 depressed patients, 17 in remission from depression, 20 normal control subjects and 15 in remission as a result of ECT. Although this study showed impairment two weeks after ECT, at six months, no problems were reported. (Williams, et al, 1990)

Finally, one article did discuss the more severe problems associated with bilateral versus unilateral treatment and urged clinicians to take into account the non-memory cognitive effects of bilateral treatment, and to inform patients of these problems prior to consent. (Calev, et al, 1995)

In a 1983 study (Squire et al, 1983), researchers examined self reports of memory problems in patients receiving both unilateral and bilateral ECT, and among patients with depression who received other treatments. The patients who did not receive ECT did not report any memory problems seven months after hospitalization. Compared with bilateral ECT, those who received unilateral ECT reported minor memory complaints. Half of the patients who received bilateral ECT reported poor memory three years after their treatments.

An extensive search of the literature conducted by the author revealed little information on patient views. One study compared 26 patients who complained of permanent, unwanted effects against two control groups. Subjects were given a battery of 19 cognitive tests. The significant differences among the complainers were mostly attributed to depression and medication, not to the ECT treatments. However, some impaired cognitive functioning was seen as a result of ECT. (Freeman et al, 1980)

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 effected.

"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..."

Informed consent is a crucial issue among ECT survivors, many of whom feel they were lied to. And being given accurate information prior to ECT may have a bearing on the aftermath. Among those who reported they had been given information prior to ECT, 30% said ECT helped them, and another 25% felt it had provided some or temporary relief. And among that same group, 45% said they would consider ECT again if other treatments failed. 35% said they would absolutely not have it again, with the remainder reporting that they might consider it, but were not sure.

"My doctor told me nothing except how great it was supposed to be...

"I was told there would be no permanent damage and memory would return in six weeks. I am still waiting---it's 11 years and six weeks..."

"Doctor stopped returning my phone calls when I said 'memory's not returning...'"
"I was certainly not exposed to any information about the possibility of the type of damage I have suffered..."

Among all respondents who answered the question (6 provided no answer to this question), 42.85% said they felt ECT had caused definite changes in cognitive abilities. This included being able to do mathematics, balance checkbooks, use their technical skills, write, and use their creativity. 40% said that ECT had caused no cognitive damage, with the rest either unsure or feeling the damage was minimal.

"Brain damage has been documented by testing (3 times)..."

"The neuropsychiatrist admitted that impairment was probable, although difficult or impossible to test for conclusively..."

"Turned me into a walking zombie, killing all emotions and feelings for several months..."

"It's like a bomb being set off inside your head...literally a mind-blowing torture..."

The majority, 85%, had ECT to treat major depression. The remaining 15% had rapid cycling, mania, mixed states, and one person reported he was given ECT because of juvenile delinquency.

30% of the respondents were unsure of whether they had unilateral or bilateral treatments. Of the remaining , 63% reported they had bilateral, with 7% reporting unilateral ECT treatments. One person had both unilateral and bilateral during different series of treatments.

The smallest number of ECT treatments reported was three, after the patient refused to have another. The highest was greater than 100. (This number is not figured into the following average.) Of those who knew the number of treatments they had, the average number was 12.6.

The following question was asked in the form of a follow-up question: "If you felt ECT harmed your memory seriously or caused other adverse side effects, did you discuss this with your doctor following treatment?"

The answer to this question is the most important finding in the study, in the author's opinion. Two respondents said they discussed this with their doctor afterwards, and were treated with kindness, sympathy and respect. Eight said they attempted to discuss the problem, but their feelings were dismissed by the doctor. The doctors said they mis-remembered, or the problems were from the underlying depression or medications, or they simply were mistaken. These eight people reported that they felt the doctor did not believe them, or did not care.

Of those who answered the follow-up question, 24, or 75%, said they never returned to the doctor who performed the ECT. Therefore, the doctor never knew the problems that ECT caused the patients...and thus, when doctors claim they have few to no patients who complain, they may be telling the truth.

This kind of finding should astonish doctors who perform ECT, and should cause them to follow up on patients who leave their care after the treatment, as well as reconsider their opinions on patient complaints.

While this study is not meant to be the last word on patient views of ECT, it should be carefully studied by those who perform the treatment. The alarming rate of those patients who feel damaged by ECT and never return should open the eyes of the medical community and help them understand some of the reasons they feel their patients do not suffer any negative side effects.

Conclusions:

Critical to the understanding of ECT and its outcome is to give a strong voice to those who have undergone this treatment. True informed consent is crucial in order to give patients the chance to make an educated decision about the treatment of their illnesses. Many patients continue to express their dismay in learning that they have suffered more severe side effects than doctors prepared them for.

It is hoped that this study will act as a catalyst to further research, one which will continue to listen to the patients of ECT. References

Durr AL, Golden RN (1995) Cognitive effects of electroconvulsive therapy: a clinical review for nurses. Convulsive Therapy 11(3):192-201.

Reid WH (1993) Electroconvulsive therapy. Tex Med 89:58-62.

Frith CD, Stevens M, Johnstone EC, Deakin JF, Lawler P, Crow TJ (1987) A comparison of some retrograde and anterograde effects of electroconvulsive shock in patients with severe depression. Br J Psychol 78 ( Pt 1):53-63.

Williams KM, Iacono WG, Remick RA, Greenwood P (1990) Dichotic perception and memory following electroconvulsive treatment for depression. Br J Psychiatry 157:366-72.

Calev A, Gaudino EA, Squires NK, Zervas IM, Fink M (1995) ECT and non-memory cognition: a review. Br J Clin Psychol 34: 505-515.

Squire LR, Slater PC. (1983) Electroconvulsive therapy and complaints of memory dysfunction: a prospective three-year follow-up study. Br J Psychiatry 142:1-8.

Freeman CP, Weeks D, Kendell RE. (1980) ECT: II: patients who complain.
Br J Psychiatry 137:17-25.

About the author

Juli Lawrence, MA, BS, BA, is a freelance journalist, specializing in health-related topics. Her educational background includes degrees in journalism and Russian language/literature, and a Master's in cultural anthropology. She received bilateral ECT in 1994 and is Bipolar I.

She worked for several years in social services, primarily in public relations, but also did prevention work among adolescents. She is the co-author of a manual for prevention workers on combating substance abuse during adolescent pregnancy. Prior to her work in social services, she worked as reporter/editor for several newspapers and wires.

She recently presented a paper at the 45th National Conference on Mental Health Statistics in Washington, D.C and served on the Federal Task Force on ECT.

She may be reached at juli@ect.org.

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