A Study of ECT and Patient Perceptions
AnalysisA Study of ECT and Patient Perceptions
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.
