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.
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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.

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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

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