What follows are the three most frequently asked questions sent via email:

1. Where can I find a facility that gives ECT?

I don’t have a master list of ECT providers. I am concerned, however, that you would be seeking out ECT on your own. It is unlikely that you would find a clinic or hospital that would give you ECT without a doctor’s recommendation.

This is something that should be discussed with your psychiatrist. Your doctor will know of facilities that perform ECT and will give you a recommendation if s/he feels ECT would be beneficial. If you do not have a relationship with a psychiatrist and wish to have ECT, you will have to find a psychiatrist who will fully evaluate you.

2. I had ECT and it was successful. Why is it necessary to put so much negative information on the web?

I am always curious about one thing when I get this question: if ECT was successful, why are you searching the Internet for ECT information? It seems to me that you would simply accept that it worked and move on to other more interesting pursuits. (I do not doubt your enthusiasm, but it’s something that has always puzzled me - I’m interested in responses!)

That said; why NOT put it on the web? I sincerely believe that patients should be told all sides of the ECT story before making their decision. Anything less is unfair and it’s patronizing.

“Until recently there appears to have been a general reluctance among psychiatrists to admit that ECT could cause memory or other cognitive problems that are severe, persistent and disabling.” This bold statement comes from a recent article in the British medical journal Advances in Psychiatric Treatment. (1)

The majority of people who find their way to ect.org AFTER ECT are at the very least disappointed. At worst, they’re devastated. If they had known before ECT that it causes a number of side effects (with discouraging efficacy and high relapse rates), they could have at least gone into it armed with information and lowered expectations. It’s less devastating to know the possibilities beforehand than to be caught completely blindsided. The latter leaves patients feeling deceived and swindled. That is much of the reason there is so much anger on the part of ECT patients who have a bad outcome. If they had clearly known the risks, they likely would have made the same decision to have ECT, but would not end up feeling so mislead.

Robertson and Pryor emphasized that “prospective patients should be warned of the significant risk of permanent amnesia and the possibility of permanent memory and cognitive disability.” (2)

You may have had a good outcome, but many do not. The negative side of ECT is discussed on ect.org to provide the full set of facts instead of the sanitized version many ECT practitioners choose to supply. Additionally, after a person is left bewildered, with no answers, this site provides a sense of fellowship with others, knowledge that they are not alone.

ECT is NOT a cure and any doctor who sells it as such is guilty of snake-oil salesmanship.

3. I told my doctor I searched the Internet and found information contrary to what s/he told me regarding ECT. His/her response was that the Internet is full of material not based on scientific facts and I should ignore it and stay off the web. Why would s/he be dishonest? What reasons could my doctor possibly have to hide these things from his/her patients?

Two simple answers followed up by more thorough discussion:

1. They are unaware or more commonly, don’t listen to their patients and have their heads in the sand.

2. They are paternalistic and think they know what’s best for you. They know if they provided a full set of facts, some patients would reject ECT.

Neither explanation means that your psychiatrist is a demon or a bad doctor. The very nature of psychiatry is based on paternalism, a view that you are mentally ill and therefore are incapable of decision-making. By removing some of the variables (information), your decision is easier to make. Unfortunately, this point of view is strongly rooted in psychiatry and in the public perception. That doesn’t make psychiatrists bad, just old fashioned and in need of a makeover.

Paternalism

“Persons with mental illness cannot make decisions on their own.” Most are lumped into that category. Yes, there are some individuals who are so ill they cannot function and make a decision. But you are obviously well enough to surf the Internet, to perform a search and find ect.org, and you’re well enough to compose an email to me, type in the email address and operate your computer to send the mail. You’re very likely well enough to make an informed decision, based on ALL the facts, not the selected few chosen by the person in charge.

There is a debate within the ECT industry concerning when ECT should be prescribed. Should it be used early in a depressive episode, or saved for those who are the most severely ill, desperate and treatment resistant? One of the leading psychiatrists in the latter camp once said that if a person is well enough to surf the Internet, he or she is not ill enough to consider ECT. (Many would disagree with that statement, but I toss it out as an interesting observation.)

Without a clue

I did a small research study called “Voices” a decade ago. An unsurprising finding from that study was that when ECT patients tell their doctors that they HAVE suffered devastating memory loss and other side effects, the doctors dismiss their complaints. But there was a highly surprising finding: many of those patients get frustrated at their psychiatrists but feel trying to convince them of the existence of the effects is futile. They move on to a new psychiatrist, or give up on psychiatry completely.

That treating psychiatrist, who has already discounted that they had side effects, never sees the individual again. S/he logically assumes that the person got better and moved on. Another success story! And since the doctor had not listened to the patient’s complaints, those complaints are never registered in the psychiatrist’s mind, and therefore, do not exist.

You can make up a variety of scenarios regarding the psychiatrist’s thinking along that path, but the bottom line is that to the psychiatrist, that patient did not have side effects. It’s a misperception, based on a refusal to acknowledge the patient’s complaints, but the doctor probably genuinely does not know it.

The second scenario is of course knowing the truth, but failing to share it. That sounds a bit more devious that I believe it is. I don’t think it’s a case of an evil doctor knowing and not telling because s/he’s a bad person. I think it’s just more of a case of this paternalism I keep talking about, a view that the doctor knows what’s best for you, so why bog you down with too much information, particularly negative information.

Another possibility is that your doctor simply has not kept up with the literature. What your doctor may consider “scientific fact” may be the statistic that has been quoted for many years, that only 1 in 200 persons suffer severe memory loss. Several years ago, that statistic was shown to be, depending on your point of view, either misleading or an outright lie. Harold Sackeim, considered the King of ECT, admitted it on a television show, although it softened the blow by calling the number “Impressionistic.”

impressionistic:

adjective

1. of or relating to or based on an impression rather than on facts or reasoning; “a surprisingly impressionistic review bearing marks of hasty composition”; “she had impressionistic memories of her childhood”

In more recent writings and testimonies, Mr. Sackeim has said that now it’s known ECT does, in fact, cause severe memory loss much more often than has been acknowledged. In his defense, he said the industry “Just didn’t know,” and that he has been trying to get industry leaders and doctors in the field to acknowledge what is now known.

For seventy years, patients have been reporting the same complaints, but “they just didn’t know.” Sackeim claims that they only discovered the hard science a few years ago.

The information is now out there, it’s being published, and your doctor’s only excuse will soon be that s/he’s not keeping up with current literature.

If your doctor is promoting ECT as a cure for depression, consider that a red flag and get a second opinion. Even the most enthusiastic ECT cheerleaders will tell you it’s most often a temporary fix, one that will require regular treatments indefinitely.

References:

1. Mangaoang, M. & Lucey, J. (2007) Cognitive rehabilitation: assessment and treatment of persistent memory impairments following ECT. Advances in Psychiatric Treatment, 13, 90-100.

2. Robertson, H. & Pryor, R. (2006) Memory and cognitive effects of ECT: informing and assessing patients. Advances in Psychiatric Treatment, 12,228-237.