Preparing for ECT: You can make a difference
Lest you try to discount my advice by thinking, “Wait a minute, that can’t happen to me. That gal’s off the charts!” I acknowledge–fully–that in the field of mental health I’ve spent much time as an outlier (although outliers, remember, are often stories of success–in other circumstances, I acknowledge), and that my experience isn’t everyone’s.
Like, let’s take medication trials. The researchers actually define someone as “treatment-resistant,” or pretty darn hard to treat” after (and this is laughable to me) “. . .two adequate treatments of standard antidepressant agents for 6 weeks each, with or without augmentation strategies” (Sachs 1996).
So, treatment resistant after many more than two adequate medication trials, my treatment team made the decision to go for the big one: ECT.
Electroconvulsive therapy (ECT) remains an end-of-the-line treatment–it’s not exactly where you start–but the research on it is solid. It’s like Khalid et al. (2008) say: “ECT is still highly effective in severely treatment-resistant patients with major depressive disorder”–and I’d throw in bipolar depression, too.
But there are some side effects to contend with, as there are, of course, with medications, I’d be the first to acknowledge. The best known and most feared is memory loss. What patients may not know about it– and doctors may not tell them–is how life altering that loss can be. Add to memory loss the negative impact ECT may have upon a variety of other aspects of cognition, and there’s a lot to contend with.
Now, at no point in this process does the ECT team–or anybody at all–meet with you to discuss in advance of your treatment the fact that your memory will be very impaired. (In fact, they never meet with you to discuss anything at all, from the weather to the fact that you might be taking anticonvulsants that could prevent a seizure. It’s a little loop in the system, as far as I can tell. You meet the doctor who heads up the team as he’s attaching electrodes to your head. Hello, doctor.)
And in a move that makes me suspicious of the medical community the 2001 American Psychiatric Association’s (APA) ECT consent form not only had no warning about adverse effects on cognition, it actually wrote (I just love this), as per Robertson & Pryor (2006) that, “‘[m]ost patients report that memory is actually improved by ECT.” This, my friend, I find hard to fathom.
According to Rose (2003), the Royal College of Psychiatrists’ 1995 Fact Sheet on ECT stated that memory of recent events is, indeed, affected by ECT, but “in most cases this memory loss goes away within a few days or weeks although some patients continue to experience memory problems for several months.” By 1997 they had added, as per Johnstone (1999), “As far as we know, ECT does not have any long-term effects on your memory or your intelligence.” [Fortunately this insightful handout has since been updated.]
While I confess that I’m an outlier in my memory loss experience with ECT, I also want to point out that research is finally catching up with patient experience, which has been dissed in a rather unpleasant way. Exhibit A: a 1980 piece on ECT patients who, well, complained about their memory loss entitled “ECT: II: patients who complain.” The authors tried to attribute the forgetting to ongoing depression, but, when controlling for that depression, they still found memory and general cognitive functioning were indeed impaired in what they lovingly called “the ECT complaining group.”
Fortunately, more recent research seems to have gotten in touch with reality. Feliu et al. (2008) wrote that despite a “relatively complete recovery of memory functioning several months following ECT in a majority of patients, many individuals complain of continued memory deficits 3 years or more after treatment.” Rose found that at least one-third of patients in a meta-analysis reported persistent memory loss.
No matter whether you have a long-term ECT memory problem, or just a ‘regular case’ of memory impairment, in between your sessions you’re not going to remember squat. An important conversation you had with your spouse over the weekend will be wiped out by Monday’s seizure–and after 2-3 of these jobbies? You might open your computer, and it will ask for your password, which you’ve put in every day for the past 20 years, and you won’t have the faintest idea what to enter.
Now, really, someone from the ECT team ought to meet with you. They ought to explain the severity of the situation, because you should know, really know, what “loss of memory” means, before you make your final decision. But–and here, I did get to my point–were you thinking I’d never make it?–you need to know what a disaster your memory is going to be, because if you know in advance, you can prepare yourself for the wreck that is coming.
Now, again, I admit I’m an outlier. I want to ‘fess up and tell you, so you won’t come back and say–aw, this just applies to someone who’s a dot out there in there in the ethosphere, or, as is so likely, the New York Times doesn’t ferret out this information later, and call me a bellyacher and troublemaker. Yup, it went worse for me than for many people.
There are years I don’t remember.
But that doesn’t excuse anything–and changes must be made. Some of us forgot their passcodes, their Visa payment dates, a spouse’s birthday, you name it.
And I’m not even addressing here the personal component of it: the complete blank when I think of my 9-month-old nephew’s existence from birth to 7 months, the vacation to Alaska with my Father that has vanished, the hole that is my brother’s wedding. But do prepare yourself for that, too, for the hit that what they call ‘autobiographical memory,’ or “one’s store of knowledge of past experiences and learning” takes. In fact, Robertson & Pryor suggest that, instead of calling, say, what happened to me regarding the total lack of memory of my nephew’s birth, ‘forgetting,’ it should be referred to as “amnesia.” And they conveniently provide a definition for that, as well:
the loss of autobiographical memory, i.e. the erasure of all that was thought, done and learned during a particular period. Amnesia is different from ‘forgetting’ in that the memories and knowledge are obliterated and cannot be accessed by effort or reminders.
Nice. Very nice. I feel so much better.
There’s so little to do to prepare for that. If only we had ways to hold on to memories in advance, to pin them on a board, to turn them into charms and wear them on a bracelet.
But I want to talk about what could have been prevented had we been warned before.
Now, the ECT team may say they have told you in advance–and sure enough, about 10 minutes before they start placing the electrodes on your head, someone hands you a consent form and you–hungry and thirsty since you can’t eat or drink before the procedure, tired, since it’s performed around 6:00 A.M., scared–no explanation needed–are expected to read and digest the information given to you, as if you’re reading a scholarly tome. The consent forms do, indeed, warn you about memory–in case anyone ever reads them-but it’s too late then to do anything about it.
So here I’ve come, well, not exactly like Superman, to save the day, but to put forth some suggestions that will help a person scheduled for ECT–and I’m counting on my readers to spread the word.
Before you start ECT you NEED to:
1. Write down all your passwords, and tell somebody close to you where you’ve put that crucial list, or, better yet, make a book-–a hard copy of a book, yes, with all your passwords-–and all your security questions. Then tell somebody where you’ve put that book. I assure you—you won’t remember.
2. Create a set-up for payments that are due on a schedule, like the phone bill, the credit card bill, insurance, or rent. A number of these can be set up with recurring payments online–but others–think rent–will require you to establish some sort of system to remind yourself that the event is coming and that it’s here. [As an Apple junkie, I put the dates in iCal and Reminders. Then I wrote post-its I stuck on the bathroom mirror (which of course came off by the time the date had arrived), and, most successfully, put my mother in charge.]
3. Either share with somebody close to you whom you really trust, or write down in a place that you simply cannot help running across [taping it to the toothpaste tube works, if you’re out of ideas], where your hidden stashes are–whether they be of cash, of jewelry, of love letters from your 7th grade boyfriend, whatever. Do not rely on yourself to remember, thinking, “Oh, I could never forget where I keep those letters from Boris, the ones where he told me he loved me more than stuffed potatoes.” Trust me–it’s gone as fast as they can get those electrodes on.
4. Make sure you know where you’ve put your insurance card or cards, and, for double security, write down all the information in a duplicate place (I, Apple junkie, put it in Notes.).
5. Make a list of all your medicines and dosages, and what you take when–and when you need to refill them. Put the list in a place you can’t miss it–taping it to the medicine cabinet is always an idea–but, if you take meds more than twice a day, create a check-off list, and dutifully check-off each time you take your meds. (If you are on that many meds, it’s even better to outsource regulating them to a spouse or parent or some other reliable adult during this time.) Put those refill dates, again, somewhere where you can’t miss them–iCal, a note in your actual calendar (there are people who use those, right?), in your husband’s head.
6. About this next one, you might think, Who would be stupid enough so sign up for a course when they’re going to have ECT? Well, I’m Rhona, I write this blog, I’m glad to have met you. And please, trust me on this one, during your course of ECT is not the time go back to school. So, if you are signed up for any classes, drop them before you start your ECT –and have to pay for course you don’t remember enrolling in.
7. Turn over any projects at work. You can share as much personal information as you want, and you can choose to take off as many days as you and work deem appropriate, but fundamentally you should not be in charge of any projects, and, if you are working closely with a colleague on a project you just can’t shake, you probably do need to explain that there are going to be some memory issues, so you two need to work out a plan.
8. If you have clothes at the cleaners–and you’d like to see them again–make a note to yourself that you leave somewhere you can’t miss it, or put it in your digital calendar.
9. Make sure any phone numbers you’re going to need are in your cell phone–and, as you’re doing that, make sure that they’re listed under names that you will remember. If Roberta Frances is your Aunt Bobby, list her under the name you use for her–you might not recall her full name in the midst of treatment.
- Can you think of anything else that needs advanced preparation if your short-term memory is about to be wiped out? If so, please add it to our list. And. . .
- Please share this list with anyone planning to go in for ECT–it can make all the difference in keeping afloat, outlier or no.
Feliu, et al. (2008). Neuropsychological effects and attitudes in patients following electroconvulsive therapy. Journal of Neuropsychiatric Disease and Treatment, 4(3): 613-617.
Freeman, C.P., Weeks, D., Kendell, R.E. (1980). ECT: II: patients who complain. British Journal of Psychiatry, 137: 17-25.
Johnstone, L. (1999). Adverse psychological effects of ECT. Journal of Mental Health, 8(1): 69-85.
Khalid, N., Atkins, J., Tredget, J, Giles, M., Champney-Smith, K., Kirov, G. (2008). The effectiveness of electroconvulsive therapy in treatment-resistant depression: A naturalistic study. Journal of ECT, 24(2):141-145.
Robertson, H., & Pryor, R. (2006). Memory and cognitive effects of ECT: informing and assessing patients. Advances in Psychiatric Treatment, 12: 228–238.
Rose, D. (2003). Patients’ perspectives on electroconvulsive therapy: systematic review. BMJ, 326: 1363–1367.
Sachs, G.S. (1996). Treatment-resistant bipolar depression. Psychiatric Clinics of North America, 19(2): 215-236.