The Shocking Truth, Part III

As the battle over "informed consent" rages on, when does "yes" mean "yes"?

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

I have a vague memory of it, sitting across from my mother in a booth at PhilaDeli on Fourth and South, begging for shock treatments. I'm not sure what I had heard and where, but on that day, I would not be deterred: Give me ECT or give me death.

From research, I had come to believe that electroconvulsive therapy was not only my last hope, but also my best hope. And though I was not well enough to work or to live alone or to even get through the day without my mother's care, I could still, through it all, be as persuasive as the captain of a winning debate team.

It wasn't so much the logic of what I said that convinced her, but more how I said it--tacking on a guarantee (and she knew it was no bluff) that I would kill myself if we didn't try it. My life was ruined, over, everything had been lost. I had failed to respond to every medication combination, and lived in constant pain. What did I have to lose?

Of course, my mother didn't leave that conversation and immediately sign me up. She did her own extensive research and she and my father spent long hours talking about whether they could subject their child to such seeming barbarism. She spoke to various experts on the subject who told her the pros and cons.

At the time, we were all desperate, and wanted badly to hear the pros outweigh the cons. And luckily, they did.

The experts talked only of immediate after-effects: headache, nausea, muscle aches. They also talked about memory loss, but said it was transient.

There would be short-term amnesia--a post-ECT "Where am I?" kind of thing--and some memory loss of the events surrounding the treatments themselves. Worst-case scenario: permanent memory loss for the couple months preceding the treatments and maybe a month after.

A missed movie, perhaps. Or a forgotten conversation. All of which sounded like small-time worries compared to suicide.

This was presented as the treatment of last resort--as the one thing that might save me. So I consented. I signed the forms myself because, though I was in terrible shape, I was able to do so.

It amazes me now that a doctor considered me competent enough to sign a consent form at the time. But I'm sure it helped having my parents standing right there with me.

Knowing what I do now, I'm not sure I (or my parents) would make the same decision again. What the doctors don't tell you is that the memory loss is much more devastating--and the ECT industry continues to deny this, to cover it up. Of the 240 online responses to last week's 60 Minutes II broadcast on shock treatments, most were from people saying they'd had ECT.

What, in particular, compelled them to write?

The issue of memory loss.

I started to count, but I'm horrible with numbers. One after another, the posts are a sad catalog of anger and despair. The majority spoke of losing more memory than the doctors said they would. "I don't remember my children being born," says one.

The loss these ECT patients suffer goes far beyond the commonly cited "1 in 200" figure that shows up on the model consent form drafted by the American Psychiatric Association (APA). It is this consent form that most hospitals in America still use before giving ECT. It is the consent form I signed.

In a 1996 article from the Washington Post, Dr. Harold Sackheim, whom I wrote about last week, admitted the 1-in-200 number was a fabrication, "an impressionistic number" that would "most likely be omitted from APA reports in the future." That was five years ago, and it has yet to happen.

The real number, of course, is much higher. The fact of the matter is that despite numerous journal articles and testimony from many respected neurologists and psychiatrists, the psychiatric establishment continues to ignore the problem of memory loss. Since research dollars are monopolized by those with an interest in sustaining the industry, no reliable post-ECT studies are being conducted.

When I said "yes" to ECT, I did not truly know what I was saying "yes" to. I was not accurately presented with the risks, benefits and outcomes.

Did I know it was possible I would lose years of memory? Did I know I would forget how to spell certain words, that it would take me years to be able to read a book again? Did I know it was possible the benefits would last only a few months?

No one told me these things. If they had, would I still have done it? I highly doubt it.

I gave consent to the procedure, but it wasn't truly informed--something the supervising doctor on my case admitted to me years later. Unfortunately, the alternate consent forms I've seen proposed are so extreme as to serve only as a deterrent. What is needed is a form that fesses up to the very real probabilities--both good and bad.

But if you think it's a violation of human rights to get a treatment that destroys your brain in ways doctors didn't warn you about, think about the injustice of receiving that treatment against your will. Paul Henri Thomas has already received 40 forced electroshocks at Pilgrim State Psychiatric Center in New York. Another patient there, Adam Szyszko, has gone to court to stop the same hospital from forcing him to receive ECT.

I'll write about both their cases next week. Stay tuned. PW