I have always written fairly confidently that ECT has not caused me any brain damage. I have had around 70 treatments in total, over nearly 30 years, and during that time I have – mostly – lived a full life, sitting professional exams and postgraduate degrees, and working as a psychiatrist. I have nothing to complain of. ECT appears to have worked for me, speeding my recovery, and enabling me to spend time with my family and friends. It’s not all wonderful – I don’t wish to under-estimate the awfulness of being ill, the weeks and months, and even years at the start, when I thought I would never recover. But I am one of those who say that they would have ECT again, and this has not changed.
I am not an academic researcher of ECT, and it has never been an area where I have worked, other than briefly during training. This is probably deliberate. I don’t want to be reminded of those times in my life; I still shiver when I pass the ECT suite at work. But I am aware that ECT is one of those things that creates a polarity of opinions. In journals, blogs and social media there is much written, either in favour, or denouncing it as an ineffective treatment that can cause irreparable harm.
There seems to be variation in the memory loss often incurred, although my experience, talking to other patients, is that most people get some. Early on, I didn’t think that I did, probably because I wasn’t doing a lot; but looking back now, I can remember very little of my eldest daughter’s first two years. Some people have dismissed this, saying no-one does as a new mother, but it was qualitatively entirely different after my next daughter, who was a far worse sleeper. And what disturbs me more is what it was like for her – my husband reassures me, but that time is gone for me. I don’t know what kind of a mother I was, and I do know that this is a vital time for mother and child. The pity of it is that neither of us remember it, there are no reflections forward from her babyhood.
Memory loss is significant in ECT, and patients need to know this. The difficulty is that patients will forget what they’ve been told, so they need to keep hearing it, both during and after a course of ECT. Being told you will get a bit of memory loss and it will come back is not good enough. It is also distressing, and it is unhelpful to say that you wouldn’t want to remember that time anyway. You were there, and living, and it is highly disturbing to realise that others have seen you then, and you have forgotten. What did you do, or say? What were you like?
Relatively temporary memory loss is perhaps less pressing than the bigger question of whether ECT can cause permanent brain damage. I don’t know the answer to this, but it is the pivot on which the debate rages. I don’t use that word lightly – emotions are understandably high, with some patients furious at what has happened to them, and others equally furious at an effective treatment being so denounced. It is true that epilepsy itself can cause memory and cognitive problems, but I imagine this is less likely with the controlled seizures of ECT. But all our brains our different, and some may be more vulnerable than others. We have to acknowledge this.
The question then is what do we do about it? Thinking as a doctor, I’m not sure how we would screen for vulnerability, as it can be difficult even to diagnose epilepsy between seizures. Do many people have a brain scan prior to ECT, and would this help? I imagine it might pick up the unexpected on occasion (which might be very unhelpful), and might well also give false reassurance. That’s one for a neurologist to answer.
Cognitive testing prior to treatment to establish a baseline for memory and other functions would be very difficult. Most people who get the treatment are profoundly depressed, even catatonic, and would do very badly. Redoing testing over the course of treatment would have similarly unreliable results, as I think most would acknowledge that memory is affected at that time. It would be good to have a test with a cut-off – below this score, no more ECT. But the curious combination of depression and ECT-induced memory loss make this difficult, if not impossible.
What about post-ECT? I do personally think it would be good to offer some ongoing input over, for example, the subsequent 6 months, both for purposes of support, and to pick up any deficit that one wouldn’t expect in a person of that age and educational achievement. This is something that will only work if they are well, and monitoring might best be done by a psychiatrist as regards mood, and also a psychologist as regards cognitive functioning. If the latter was found to be lower than expected, then they should be offered further input and repeat testing to maximise functioning. It might also be wiser for them to avoid future ECT, if possible.
Rather than focussing on the differences, we need to work together so that we can continue to use an effective treatment, while minimising adverse effects and supporting people who experience them. Communication needs to be very good, particularly at a time when patients themselves can’t communicate or retain information well. I have said before that I have no memory of ever consenting for any of my many courses of ECT. I don’t think that necessarily matters in itself, but information needs to be repeated again and again, and never assume that your patient remembers it.
One final suggestion I would have would be to offer all patients a debrief after their ECT, when they are on the way to recovery. For me, this would include visiting the ECT suite, which became a very mysterious place to me, and it would give the chance to ask questions. It is an experience where you can feel quite out of control – maybe this would give some back.