"It's Complicated" – ECT and more...

A lot is going on today.

Benedict Carey reported in the New York Times the latest intriguing and provocative news in the ongoing and contentious debate over the DSM-V. I'm not going to weigh in on all this, but here are a couple of interesting preliminary analyses from two bloggers I respect though they don't always agree – psychologist John M. Grohol of PsychCentral and Philip Dawdy of Furious Seasons. 

Trust me, there will be tons of people, professionals, bloggers, patients, parents, anyone who has ever been diagnosed or misdiagnosed will discussing this crucial publication when it's released, and Carey explains why:

"The eagerly awaited revisions — to be published, if adopted, in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, due in 2013 — would be the first in a decade.

"For months they have been the subject of intense speculation and lobbying by advocacy groups, and some proposed changes have already been widely discussed — including folding the diagnosis of Asperger’s syndrome into a broader category, autism spectrum disorder.

"But others, including a proposed alternative for bipolar disorder in many children, were unveiled on Tuesday. Experts said the recommendations, posted online at DSM5.org for public comment, could bring rapid change in several areas.

“'Anything you put in that book, any little change you make, has huge implications not only for psychiatry but for pharmaceutical marketing, research, for the legal system, for who’s considered to be normal or not, for who’s considered disabled,” said Dr. Michael First, a professor of psychiatry at Columbia University who edited the fourth edition of the manual but is not involved in the fifth.

“And it has huge implications for stigma,” Dr. First continued, “because the more disorders you put in, the more people get labels, and the higher the risk that some get inappropriate treatment.”

You can be sure, I'll be watching and commenting, too. But not today.

Finally, I've spent too much time corresponding on Facebook with someone who's very critical of my perspectives on ECT and who commented on my last post, which I linked to Facebook.

Darby Penney is a well-known anti-psychiatry activist who vehemently opposes ECT. Among her accusations against me is that I have a "bias toward this brain-damaging treatment." (Darby, you'll be happy to learn that Linda Andre's book finally arrived in the mail this morning, so I'll be adding it to my list of resources.) 

ANTI-PSYCHIATRY ACTIVIST CONTENDS THAT ECT CAUSES "BRAIN DAMAGE"

Penney contends that ECT causes "brain damage" and supports her statement with three clearly "anti-ECT" perspectives. 

Nevertheless, this statement, in spite of her supporters, appears to have no bearing whatsoever on the way Angela is responding to her ECT treatments. 

My question is, "Is memory loss brain damage?" But that's another story.

The point is, I'm trying to be as fair and balanced as I can be. Follow the comments to this series and you'll see all kinds of reactions. They're not edited in any way. I invite all of you with strong feelings about ECT to weigh in. This is a public forum. It's too bad Penney chose to express her opinions on my Facebook page instead of here, but that was her choice. 

Now then...

This is Week Three of Angela's eight-week course of ECT treatments – that could possibly stretch to 12 weeks, depending on her progress and her results. She is also participating in a long-term Toronto-based study involving four University of Toronto-affiliated teaching hospitals that is investigating ECT and the nature of its possible resultant memory loss at a cellular level. This study is in its fourth year and the results will be available in 2011. Although she wanted to increase the frequency of her biweekly treatments to three times a week, because of the design of the study, her psychiatrist told her that wasn't possible.

Since Monday, when Angela had her fifth treatment at 7 a.m., she's been perkier than I've heard her sound in ages. We speak every day. At least once. Often more.

During our conversations this week, we've been carefully distinguishing between how she perceives her mood as compared to how she's feeling about other issues in her life which are problematic, but have nothing to do with her psychiatric condition – her intractable depression with suicidal ideation.

"I'D RATHER HAVE MEMORY PROBLEMS OR BE A BIT CONFUSED THAN BE DEPRESSED"

On Monday, following her treatment, Angela said she was feeling "a little depressed but not suicidal," stressing that she had no memory problems at all. "To be honest, I'd rather have memory problems or be a bit confused, than be depressed," she admitted.

It was her 37th birthday, but she wasn't celebrating in any dramatic way. "We're ordering in Chinese food and watching the hockey game," she said, adding, "and my mother made me fudge, but she overcooked it. It's hard fudge." 

Angela was laughing during this conversation. I could hear her mother joking with her in the background. She was having fun. It was wonderful to hear.

On Tuesday, admittedly less depressed, Angela was annoyed because one of her cats was "misbehaving" – missing the litter box. "But I'm not feeling unhappy," she said.

This morning, she said, "Monday's ECT treatment was the best one I've had so far as far as side effects because there was a minimum memory loss," she said. "And you know, I feel like the treatments are definitely making an improvement over where I was. My affect is not nearly as flat and I'm handling my emotions better."

She said her mother's visit "went really well. I told her about my ECT and I was worried about how she'd react, but essentially she's quite supportive and just wants me to be healthy."

There are other personal issues that are bothering her, but Angela admitted, "I'm handing them better than I know I would have before the treatment."

THIS MORNING, SHE'S A GOOD SEVEN AND A HALF

On our scale of one to 10, she says she's a good seven and a half – a slight improvement over how she was feeling last week.

"If ECT allows you to be better prepared to handle those adversities, then it's worth its weight in gold," she said. 

Angela has a small studio in her home where she enjoys sculpting. When she's depressed, she never feels like working with her clay, but when we ended our conversation this morning, she signed off saying, "I feel like sculpting... and I think I'm going to go back to it."

Comments

[Will Brady]

I take issue with your use of the term "anti-psychiatry" because the term is more frequently used by those trying to discredit advocates who have legitimate criticisms against coercive practices that many [though not all] psychiatrists are quite comfortable either practicing or failing to question.

VERY FEW critics of coercive psychiatry use the term "anti-psychiatry to define themselves.

It is also rather glib of you to defend yourself when someone you write about says that you have misrepresented their POV. YOU might believe you didn't but it is not your place to say that you didn't if they say you did.

And what is wrong with you being a bit more contrite on your blog, rather than suggest a critic add it to the "comments" on the blog, which are unlikely to be read by those who agree with you already

That's lame

[Harold A. Maio]

Sadly, you chose to print the "s" word. A Rahm Emanuel moment, issuing from the NY Times Ben Carey and Columbia University professor, Michael First.

Harold A. Maio

[Julie]

to the first commenter - if you read sandy regularly, you will know that she really, truly attempts to understand what others are thinking, and to make space for all points of view. her blogs consistently reference the idea that there is no one 'truth', that there are many 'truths' and we would do best to listen to what others have to say. she has also been very honest about her experiences with psychiatrists both good AND bad. so i, take issue with your attempts to misrepresent what sandy is advocating.

[Sandy Naiman]

This morning, Sonia, my friend and faithful member of our COC community, sent a comment. She is currently teaching at a University in China and access to us has been sporadic. I've missed Sonia's thoughtful, penetrating, always intriguing insights, as I'm sure you have as well.

To make things worse, she wrote: I am receiving "We're sorry, we cannot accept this data" ... from "The page at http://thestar.blogs.com" ... Please post for me?

So here goes – a comment from Sonia which arrived in my inbox 1:17 a.m. this morning. To the best of my knowledge that means she sent it at 12:17 p.m. tomorrow morning from China:

Hello Sandy,

While ECT sounds like the white elephant in the room, of which no one really wants to talk, yet which most people see well-enough to ignore, I see therapy (and healthcare costs associated therewith) in pretty much the same way.

In my readings of historical materials, documentaries included, I have come to realize that therapy - being with a trusted person, sharing one's perspective of trauma, issues, concerns, questions, etc. - has become a business. It used to be the norm for people to trust their neighbours, to share their challenges, and to support each other when the time came. Some people nowadays call this "busy-body" or "nosy-parker" ... others wait for funding from the government before seeking help.

I see your role with your friend as therapy, for both of you, as well as for your readers. Sharing at will, from one's perspective, is irreplaceable; inexplicably healing from within. For myself, I avoid medicine as my body responds to very small doses.

I know that treatment for minors is tricky: when is one old enough to make an "informed" decision when jargon and consequences are beyond that person's grasp? I also know that some families who make decisions for their relatives, or loved ones, are looking to relieve their own stress rather than improve the quality of the person affected by the treatment. I speak from my own experience.

Rather than fear treatment, consequences, side-effects, I worry about the limited information provided at the moment when a decision must be made. I am reminded of a few TV series in which one of the actors reminds all "We're running out of time, we have to decide now!" ... that pressure is often more harmful than the treatment, or side-effects. The psychological damage from such artificial stress (I say "artificial" because it is just as easy for a professional to be honest, using "English" as opposed to "medicalese", and to discuss procedure, time required from pre-to-post, side-effects, and follow-up) is difficult to heal.

[ajw]

i write this as someone who had 17 ect treatments about 9 years ago. i would caution angela to consider that she may not understand the impact of ect on cognition until years later. it is unlikely she will remember much of what happened during the time she has the treatments. she may be fine with this, as there's not much to be said for remembering the suffering associated with severe depression. She may, however, several years from now, have difficulties with concentration and memory that are qualitatively different than the difficulties associated with depression and/or medication side-effects. does she really think "a little bit of confusion" would be okay? will she be okay with not remembering faces, or how to get places? will she accept that she has to check a recipe 20 times in order to remember the steps? perhaps. the thing about the memory loss associated with depression is that it is temporary. the same cannot be said for permanent damage that may happen as a result of ect. of course, she may consider this perfectly acceptable.

people obviously respond very differently to ect. the only things that seem to be true are:
1) that ect changes mood around the time that it is being administered on a person. i became very manic, or so i have been told by family who watched with a lot of confusion of their own. i have seen people who were unable to speak or get out of bed begin to interact with their loved ones, after three or four treatments. so there is a "change" due to the assault on a person's brain, with electricity.
2)the other thing i have observed is that the effects are short - lived and the anti depressant effect lasts only several weeks or a few months.

i am amazed that Angela is having this treatment and yet is able to so eloquently express her feelings about it and be so vocal. it would seem to me that severe depression would mitigate that possibility. for myself and the people i have known who have had this treatment, we have been virtually immmobilized and often have psychotic symptoms along with severe depression. i wonder why this treatment would be prescribed to someone who is not in hospital and able to communicate so well. i am NOT doubting that she is suffering, but it seems excessive. to reiterate, I do not doubt that Angela is going through extreme distress.does she know aobut rTMS which uses magnetic fields to improve mood? it's a much kindler, gentler form of treatment.
i am not going to weigh in on whether ect should be banned, but will say that it has never been subject to a double blind placebo controlled clinical trial and might not hold up to the scrutiny required for approval by Health Canada were it being tested today.
the rabid black and white debates about ECT don't seem to be that helpful. a neurologist i saw years ago said that the effects of long term use of "anti-psychotic" meds were far more dangerous, and less talked about, than the demonized ECT.

i wish Angela a speedy recovery and hope that she does not find herself among those of us who regret having had ECT at a time when we were desperate and vulnerable. i know that had the psychiatrist offered to cut off my hand to alleviate my depression, i would have given my "informed consent."

thanks for your blog, Sandy. it's time for us who identify as "mad", "mentally ill" or as "psychiatric survivors" to try to find our common ground.

ajw

[Pamela Becking]

Yes Sandy, memory loss is brain damage. Our memories are a huge part of who we are. Take away those memories and you take away an essential part of the human being and their connection to the people and the world around them.

Memory loss associated with ECT is not always temporary or minor. Sometimes, it is devastating and permanent. ECT can have a profound effect on the cognitive ability of the patient years later. I truly believe that if people were adequately informed of ALL of the potential risks involved with ECT, it would once again fall into disuse.