Electroconvulsive Therapy - Part 2

KB: First, I understand you have had an experience personally with ETC. How many times did you undergo the procedure and what was your general experience?

JL: Yes, I had ECT in 1994, and had a series of 12. I don't remember anything from that period, but my family has told me what happened, and I also kept a journal that sheds some light on things. The psychiatrist who performed the ECT had told my family (and me, though I don't remember it) that ECT would "cure" my depression. Unfortunately, this seems to be quite common, and is an empty promise. ECT can sometimes relieve depression temporarily, but it doesn't cure it, and there is absolutely no research that backs this up. In fact, the research is quite clear that ECT, when it works, is very temporary. But they fail to tell most patients this fact up front. I call it a bait and switch, because they hold out a promise of a cure, and then when the depression quickly returns, they switch gears and start talking about having maintenance ECT on a regular basis.

KB: I understand you have a website for those who have been injured by ECT to get support. Please tell me about what you've been trying to do.

JL: I really have two main goals with the website. One is simply to provide information, so that people have all sides of the story. In the end, the choice should be theirs. But the information that is given out by the treating psychiatrist is usually very skimpy, and of course it's very one sided, that ECT is a great thing, no big deal. For a minority of patients that may turn out to be true, but people ought to have the right to know there's more to the story. I aim to provide those stories. My other goal is to provide support for those who feel very betrayed and hurt.

Imagine being told by the psychiatrist that ECT is going to fix you right up, it will get rid of your depression once and for all, and it's painless and quick. You go in for the treatments, and not only does it not cure your depression, but now you're still depressed, and on top of it, you've got other problems: severe memory loss, even lost abilities that were crucial to your job or everyday living. That's bad enough, but when you complain to the doctor, s/he tells you you're mistaken, or you're just a whiner, and the doctor blows off your concerns.

So now, you're worse off than you were before, and the doctor that did this won't give you the time of day and basically won't believe you. It's really no different than being violently raped, and nobody believes you and you get chewed up by the system. So ect.org is there as a community to offer support and understanding. The members of the community don't have all the answers, but they do have compassion and they will listen. They've been there, and they understand.

I mostly want to provide what was not there for me: information and understanding.

KB: Have you experienced any problems with keeping your site up? Have you been threatened with lawsuits? If so, by whom?

JL: Yes, it seems that the industry is apparently threatened by the idea that people would speak their minds and make this information available. I'm continually called a Scientologist, which I'm not, and have had the website hacked a few times. I've had a number of people and organizations threaten me with lawsuits, but the two major ones are Tenet Healthcare Corporation and the American Psychiatric Association. Both had their lawyers send nasty letters, but they saw that their attempts to silence me only made me get louder. Especially with Tenet, which is one of the largest healthcare organizations in the country. They have such an ugly history, and had to pay one of the largest judgements in American history, in a case brought by the Justice Department. And even after that, they still get into trouble a lot.

My fuss with them started when Kathleen Garrett, an elderly woman in St. Louis, was being forcibly shocked. The hospitals in charge of all of that were owned by Tenet, and when I got loud about her case, they sent lawyers from Brian Cave after me. Brian Cave is a huge law firm, one of the largest and most powerful in the US.

I have to admit I loved it, because it meant that the negative publicity was getting to them. They made all kinds of idiotic claims; including saying I was violating Kathleen's right to privacy, which they somehow thought they owned. I guess they didn't realize that Kathleen herself had given me copies of her medical records, and wanted me to take it public. Plus I had a signed statement from her saying she wanted it to go public. They also threatened me with a libel suit.

But in the end, they backed down, so I feel that I beat Goliath. But what's great about that whole episode is that I've heard from so many people who have worked there who have horror stories to tell, and I've heard from a doctor overseas who tried to battle them, and they nearly wiped him out. His stories were straight out of a Grisham novel

The best part: they stopped the forced shock of Kathleen Garrett and let her go. Unfortunately, every time a forced shock case comes up in St. Louis, it's always a Tenet hospital behind it, and usually the same doctor.

KB: I have a couple of names and I'd like to get your impression of

each. The first is Harold Sackeim, Ph.D.

JL: That's a hard one, because he's going through a difficult time in his life. So I feel a lot of compassion for him right now. Normally, I would have negative things to say, but I can't kick a dog when he's down.

KB: The next name is Dr. John Friedberg.

JL: One of my favorite people on earth. He's wickedly funny and passionate, and he's always right there, willing to lend a hand when something is going on. He's a neurologist who probably understands how ECT affects the structure of the brain better than anyone else in the world. Of course the industry tries to diss him in any way they can because they don't like what he has to say.

KB: Why isn't there more research being done on the effects of ECT?

JL: Well, I think there is a lot of research that does go on, but it's always done by the same handful of people. I think their minds are made up, and they slant their research towards the conclusions they want. Of course they don't want to truly look at the impact of ECT on people, because the answer isn't pretty. But they don't want to listen to patients...they just want to keep their heads in the clouds and continue living a life of self deception. ECT is truly a religion for them (the industry boys), and you just can't argue with faith. You gear your research around that faith to make it all fit what you believe.

KB: In my educational training I was taught that the most effective treatment for depression is medication and psychotherapy. In most of the information I've read that compares ECT with other forms of therapy, it is only compared with drug therapy, not drug therapy and psychotherapy. Why do you think that appears to be the case?

JL: That's a great question! I think that the answer is two-fold: First, psychotherapy is more effective in the long run than ECT. Psychotherapy is very effective, and it lasts. ECT doesn't last when it works. And there was a recent study by Sackeim (shocking actually) that showed that out in the real world not his research lab where they use souped-up machines ECT is really not very effective at all. So why point out the obvious; that psychotherapy is a much better tool? Second, ECT is seen as the quick fix. Psychotherapy takes time, and it's quite expensive. ECT research, because its success rate in the long term is so dismal, doesn't look at the long term. The research is focused on short term because long term points out the obvious flaws. Very little research is done regarding ECT that goes beyond the immediate results. To compare with psychotherapy, you would have to commit to six months, or a year, and the ECT research just doesn't do that.

KB: And last, why do you think doctors keep using ECT? Do you think financial gain has anything to do with it?

JL: Oh I absolutely believe financial reasons are behind the continuing use of ETC. As a psychiatrist who practices ECT, you can make a lot more money per minute by doing ECT than you can just doing med checks. Medicare pays, insurance pays, it's a great deal. Look at it from this perspective: would you make more money on one patient by doing med checks every few weeks, or by having that patient in an ECT suite three days a week for two or three weeks? The choice is obvious. Even if you compare a hospitalized patient not receiving ECT with one receiving ECT, it's just extra money in the bank.

Several years ago, Psychiatric Times carried an article on how psychiatrists could cope with dwindling incomes under managed care. One of the suggestions was to add ECT to your practice, that it could raise your income.

And the way ECT is practiced in the US, it's kind of an assembly line. Patients are lined up outside the ECT room on stretchers and they're just moved into the room, one after another. The ECT practitioner stands there, sets the dials, pushes the button. Next!

I think Medicare pays the doctor about 100 dollars for that. Private insurance is, of course, substantially more.

I recently asked a psychiatrist locally (who has a small-town practice, but does ECT) how many patients on the average do you treat each week. His answer was about 15-25 on average. And this is a small town practice. 20 times three times a week for each patient, is 60 treatments. If you just go with the 100 per treatment (even though many patients will pay more because of private insurance), 20 patients three times a week, that's six thousand dollars... on top of the regular practice. He would still be doing office visits with these patients and hospital rounds for those in hospital.

So a small-town psychiatrist on average might be adding several thousand dollars to his income each week. Not bad for three mornings a week. Do the math over the year, and it's not a bad additional income.

________

Id like to thank Julie for her answers regarding what can only be a difficult experience.

Come back next week for Part 3.

 

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