Electro-Convulsive Therapy (ECT) in the NY Times: supplying a missing perpsective 01/26/2011Posted by ALT in Mental Health News, Patient Rights and Advocacy, Treatments.
Tags: ECT, FDA, Lisa Andre, NY Times, survivor voices
January 23, 2011: the New York Times published an article about the upcoming FDA review of the “risk level” of electroshock devices (read it here). In effect, this will be a review of the procedure – Electroconvulsive Therapy [ECT] to its supporters and Electroshock Treatment [EST] to detractors – itself. Although the therapy in its modern form has been practiced since 1937, the first clinical trials or formalized research on its efficacy were not done until the 1970s (and even these were small and not up to current FDA standards). A FDA grandfather clause has prevented the electroshock devices from being subjected to the rigorous review process now in place for all other medical devices.
The push is to reclassify electroshock devices to the “medium risk” level, a class that includes syringes and surgical drills. This would almost certainly facilitate a more widespread practice of this very controversial therapy, which is already on the rise in the US – about 100,000 American per yer receive the treatment.
New York Times author Duff Wilson lavishes attention on psychiatrists in favor of the procedure, but only begrudgingly allows for even the existence of an opposition. Two quick (and mostly paraphrased) quotes from Dr. Peter Breggin and Dr. John Breeding give a brief snapshot of detractors’ arguments against EST.
But where are the quotes from actual people who have received the treatment?
Given that very little actual research has been done on the topic, it seems doubly important to access the wisdom that does exist – experiential and qualitative knowledge gained through actual encounters with EST, its benefits (if any), and its side effects.
So, in the true spirit of systems of care (letting the client speak and make decisions for him/herself), here is a bit of that all-important client voice so conspicuously absent from the New York Times piece.
The Missing Voices
Linda Andre, who received ECT in the early ’80s at the age of 25:
Before shock, patients are specifically told by our doctors that we won’t lose our memory, or that if we do, any permanent loss will be only for the time of the treatment itself, and that any other erased memories will come back. About permanent loss of cognitive abilities, doctors say nothing. Thus the double horror: having lives and abilities erased, not only without any warning, but after being assured that it couldn’t happen. And then when it does, the same doctors just keep assuring you that it didn’t happen.
As if we were so crazy that we don’t even know what we remember and what we don’t remember; I guess that’s what they think.
Here’s what was erased: most of the knowledge and skills accumulated during my college education, my college graduation, a graduation party no one else who attended it will ever forget, my entire relationship with the love of my life, the other important relationships in my life in whole or in part, my career as a writer and scholar, two foreign countries, trips to California, Vermont, Massachusetts, and possibly any number of other states, the reason for the end of a friendship with someone I do remember loving very much, the death of a friend’s brother, the location and contents of a safe deposit box to which I hold the key, and more, much more than I will ever know…
Shock bears about as much relation to gentle and gradual normal human forgetting as being killed in a war does to dying of old age. Shock kills memories blindly and randomly. It makes no difference how important the memory was in the first place, or whether it was a bad or good memory. You can’t get your memories back by tricks like going to the place where they happened. They don’t come back, ever…
One of the saddest things frequently said about survivors of ECT is that someone is ‘just never the same again.’ There’s even a name for this in the literature: the ‘taming effect.’ Whether or not it is possible to define exactly what’s missing, something essential to one’s humanity and personality – some part of one’s birthright – has been destroyed. Creativity is especially vulnerable. Shocked artists no longer create, musicians can no longer play. Spatial, mechanical, and mathematical abilities can be compromised. Each person will be most affected by the loss of what she valued most highly…
My life was stolen. No words can really describe it. Memory. Loss. Forgetting. None of them come close.
And somewhat more famously, Ernest Hemingway, who received ECT in 1961 and committed suicide shortly thereafter:
Well, what is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business? It was a brilliant cure but we lost the patient….
Sally Clay, who received ECT in 1967:
Nearly 20 years ago, I underwent 30 shock treatments at the Institute of Living in Hartford, Connecticut. As a result I lost two full years of memory. I have one child, a daughter, and the two years that were wiped out in my memory were the years when she was two and three years old; those memories are irreplaceable… My memories are clear and detailed back to the age of 2 and a half. But when it comes to those two critical years before I received shock treatments, my mind remains blank…
Doris Heikila, who received ECT in 1980:
It’s been 7-8 years since I had them [shock treatments], the long term damage is there and it’s not coming back… I can no longer fill out applications. I’m not able to retain anything I might learn, I read and the next minute it’s gone. I can’t follow written instructions, I become confused. Just the other day I had to fill out an application for Food Stamps. I couldn’t do it. I started to cry. Something so simple and it deals with current things, I just couldn’t handle it…
I feel doctors should tell people that are about to have ECT that sometimes, some of the brain is damaged and not all memory might come back. If I had thought for one minute I might of lost any of my memory forever, I would not of went through with it!
I’d also like to tell you that since the ECT I lost my first husband, I have hardly any memory of him, we were married 10 years.
I can no longer remember from day to day. When I’m lucky enough to find work, it’s mass confusion and I usually don’t last too long.
For more accounts of ECT from people who have experienced the therapy, check out the ECT 1st person project where hundreds of accounts are stored online in an easy-to-access format.