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Electroconvulsive Treatment (ECT)

Deciding whether to have ECT

Most of the people we spoke to were very unwell when they were offered ECT. Some were ‘catatonic’ (unresponsive) at the time, and others had attempted suicide, often more than once. Some had young families and their partners had to look after them and their children. So the decision to have ECT was being made at a time when they and their families were in crisis and really struggling to cope.

Despite this, a good number of people we spoke to said the decision was not hard. For example, they felt ECT was just another treatment to try. “Couldn’t care less”, “didn’t think much of it at the time”, or that there were no other options, and just accepted it. Some were not in a position to make a decision and their carer was consulted (see more on this here: ‘Caring for someone having ECT’). Some who had had a good experience of ECT in the past, or knew a relative who had benefited from it, felt they should have been offered ECT sooner. But Ian, whose wife had ECT recently said that he knew his wife normally needs a couple of months to respond to drugs and he felt ECT was offered too quickly.
 

Catherine Z had found ECT had worked for her and when her son had depression she wanted him to have ECT straight away. He was given high doses of drugs that had no positive effect which she found “distressing”.

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Catherine Z had found ECT had worked for her and when her son had depression she wanted him to have ECT straight away. He was given high doses of drugs that had no positive effect which she found “distressing”.

Age at interview: 52
Sex: Female
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He then started on medication, anti-depressants that seemed to initially make him better but then prompted mania and as soon as he became manic, I, we all quickly recognised the signs because we’d obviously had a lot of experience of it. It took him a long time to be admitted to hospital but we got him there eventually. When he was admitted to the hospital he was given extremely high doses of all sorts of drugs; olanzapine, haloperidol and none of them worked. He’d been on olanzapine for 30 days it was having no effect apart from making him want to eat a horse!

His mental state was deteriorating and basically the drugs were not touching him. It was extremely distressing as parents to see him in that state. But from the second week, every time we went to see him and had meetings with the psychiatrist and the nurses we asked, “When are you going to start the ECT?” because we knew it will get him better. We’d had experience of this we understand the illness. Even the symptoms and how they were presenting were so similar to my own case.
Many people, however, found it difficult to decide whether or not to have ECT. Feeling very unwell and desperate to get their life back, not understanding much about ECT, and being told it was the only solution only added to the stress and anxiety e.g. feeling “absolutely petrified”. Some struggled to remember the time when they were offered ECT either because they were so unwell and stressed at the time, or because they have now lost their memory of that time (see ‘Side effects of having ECT’). 

For some the decision was, or seemed to be, taken away from them: ECT was given as a compulsory treatment under the Mental Health Act to some people, and others felt if they didn’t agree, they would have been given it anyway. ECT is not usually given without consent. Even if someone is detained in hospital under a section of the Mental Health Act, they can still refuse ECT most of the time. However, ECT can be given without consent in serious circumstances. This can happen for example if it is an emergency e.g. it could be life saving, or if a doctor assesses that a person is not able to make a decision for themselves. If a doctor judges that someone is too ill to make a decision about whether to have ECT, another doctor or “SOAD” – Second Opinion Appointed Doctor – also needs to agree that ECT is necessary. 

Regardless of whether they were in hospital voluntarily or not, being able to make an informed decision about whether to have ECT was important to most of the people we spoke to. This was so even though some were so ill they were not able to fully take in the information. 

In the past, consenting to ECT was a very different ball game. Helen was held in an old asylum decades ago and didn’t even know she was given ECT until after she woke up from the anaesthetic. Carys only found out that her daughter had had ECT when she had told her “I’ve had some sort of electric shock”: At first Carys thought she had had an accident.
 

Yvonne was given ECT many years ago when she was 18 against her will via a court order. The experience she had of ECT was very distressing and she didn’t understand how it might work.

Yvonne was given ECT many years ago when she was 18 against her will via a court order. The experience she had of ECT was very distressing and she didn’t understand how it might work.

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Personally I just think that my mind had to shut down because it had to, sort of, almost self-preservation. So then it was decided that they would try a treatment called ECT and they did, from what I can remember, because I was so ill at the time that I don’t know if this is a truly accurate account, but it’s what I remember as happening. 

Is that a nurse sat down with me, and told me that I was going to receive this treatment, because I was very poorly. They asked me, they went over what would happen to me during the treatment. That I would be taken along to a room. I would have an anaesthetic and then I would waken up and I would no know anything. And that was basically how it was put to me.

I asked what ECT stood for. And they said Electroconvulsive Therapy and I ask why was electro side in it, and they said, “Oh because we give electric shocks to your brain.” But at 18 years old it was really, I just really did not want that, and I did rebel. I kept running away from the hospital, because now I just knew that this treatment sounded horrific and I didn’t have, I did na want anything to do with it. 

So then eventually they got a Court Order to say that they could give me treatment. My Mum had to sign papers to say that we could, that I could receive the treatment as well. Which I didn’t like because the relationship had broken down with my Mum, so in my eyes she shouldn’t have had any say in what my treatment was, or wasn’t going to be. Which was why I’m really glad now that named persons are available, because if I had, if I had to go through that again, it would have been a family that I was staying with at the time that would have made the decision for me, because they were people at the time that I trusted. And for a long time I felt that ECT was something that my Mum did to me, because we were nae getting on.

But yes, so they applied to the Courts and it was decided that I would have ECT and I was put in a locked ward because I kept running off. And I just remember being really, really frightened, just petrified. Being wheeled, they made you sit in a wheelchair for some reason to take you into a room, being wheeled down to this room and just being, yes, absolutely petrified that I didn’t understand what was going to happen. I knew the basics that I was going to get an anaesthetic and I wouldn’t really remember much about it. Or I wouldn’t remember anything about it, but I would probably have a really sore head afterwards. But I didn’t understand how it would work. You know, I couldn’t understand well you’ve tried all the medication, you’ve tried all the talking therapies and things, and none of that’s worked, so why is this going to be any different. And I thought I’m going to go through all this, and I’m still not going to feel any better, because mentally I just couldn’t ney figure out why putting an electric shock through my brain was going to make me feel better.
What people found useful in making their decision
People mentioned a number of things that helped them to make their decision. Some found discussing the treatment with their family was helpful, especially where members of the family had had the treatment themselves, or worked in mental health. But others found that the stigma attached to ECT “Frankinstein-type electric shock thing”, “medieval treatment” could make this discussion difficult. 

Having a good relationship with the medical professionals who suggested the treatment was also useful in deciding.
 

Annie and Lorraine said that the decision that their mum should try ECT was a family decision. It took time for the doctor to understand that they had to make the decision as a family.

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Annie and Lorraine said that the decision that their mum should try ECT was a family decision. It took time for the doctor to understand that they had to make the decision as a family.

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Annie: It did work, it did work. But I think as we’ve got to all understand it, I think doctors need to understand that, you know, a lot of it comes from…

Lorraine: The family.

Annie: …the family, you know.

Lorraine: Yes.

Annie: And it’s not just one-to-one, because mum would never have made that decision on her own.

Lorraine: No, not at first.

Annie: But, and at first we did have a bit of, with [name of doctor].

Lorraine: We did.

Annie: But I think as he got to know us and we were a very close family and all our interests were about mum getting better, I think then we all just worked together, which…

Lorraine: [mhm]

Annie: And it, touch wood…

Lorraine: And it worked.

Annie: it’s worked ever since.

Lorraine: Yes.
 

When Tania was offered ECT by a private consultant who she described as “angry,” she felt terrified. But when she later had ECT under the care of a family friend, who took time to explain ECT, she had a positive experience.

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When Tania was offered ECT by a private consultant who she described as “angry,” she felt terrified. But when she later had ECT under the care of a family friend, who took time to explain ECT, she had a positive experience.

Age at interview: 41
Sex: Female
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It was actually, it was a private hospital. We had insurance and he was not he didn’t do it in a very good way at all. He was very angry, he was angry that I’d, you know, I think it looked bad on him that I’d almost killed myself when I was supposed to be under his care. He was very angry and he essentially threatened me and said, “You know, you have to have this treatment or, you know, we’re going to section you and you’ll have to have it anyway. And I was quite overwhelmed by the whole thing. I didn’t know what it was, and it sounded, I was quite paranoid by that stage anyway, and so I was quite terrified and, but I signed the form because it really made it sound as if I didn’t have any choice. I mean some of the things he said were weren’t even true about the consequences, but he, so I signed the form and I had it. I had my first treatment.

And I don’t really remember what happened. I mean I just had one treatment and then for some reason he stopped. He just, I don’t know what happened. I was well enough at some point just to leave the hospital, but I wasn’t well, I wasn’t better. And I was still really, really ill and then we met someone else. My parents went to the funeral of a family friend. There was a friend there a friend there who was a psychiatrist and they told him about me and he said, “You know, it really sounds like she needs ECT.” You know, “It really sounds like she’s got severe clinical depression and the drugs are not working. She needs to come off the drugs and have ECT.” 

And I ended up going into hospital actually under his care and he was a very, you know, he was a very nice man and he made it, he didn’t make it sound frightening at all. He just, you know, explained the whole process. Explained that I have a choice in the matter, that you know, that he felt that it would work and it was definitely worth giving it a shot. And I did. 
People who had been offered ECT in more recent years often had been given information about the procedure to help them make their decision. It is recommended by NICE (National Institute for Health and Care Excellence) that general information about potential risks and benefits and risks and benefits specifically for the individual should be given to all people being offered ECT (Guidance TA59 last updated 1 October 2009). John Z felt the psychiatrist “explained it perfectly” and said “if you ask them, they tell you”, although he felt some health professions still treat patients as “over there”. 

Some people weighed up the costs and benefits. So side effects were balanced against the possibility ECT could mean getting their “life back”. Tania said although she was concerned about memory loss, she agreed to have ECT because she was at risk of suicide and her consultant told her “what good is your memory if you’re dead”. In the end, ECT worked very quickly for her. Having the opportunity to visit the hospital where the ECT would take place, or looking around an ECT suit itself, was useful for some in deciding whether or not to have ECT. Some people said that just knowing they had a choice helped them (see for more ‘First thoughts about ECT and finding out more’).  

What people found difficult when making their decision
Many felt the information they were given about ECT was inadequate, and they wanted to know more. Even when people were sectioned, they said knowing more would have been helpful. Yvonne said despite being sectioned she was still an “inquisitive” person, and would have liked to have known more about how it worked. Sue, who was also sectioned, said the leaflet she was given only gave an overview and knowing more would have “helped with my decision or with my feelings about having it”.

The depth and type of information people wanted varied from person to person. Ian and Sue described the information given to them as too simple whereas David Z said he was given “too much detail”. David Y wanted to know a lot of detail, such as what the ECT suit was like, how long the shock lasted for, and how it kick started the brain. Although people were often given a leaflet about what would happen during ECT, often what people really wanted to hear about were others’ personal experiences of the treatment, its side effects and other experiences of recovery. People found it particularly confusing when they saw different clinicians who had different opinions about whether ECT was appropriate for them or the person they cared for.
 

Catherine Y was asked whether she wanted to have ECT or change her medication. She decided against ECT because she didn’t know enough about it.

Catherine Y was asked whether she wanted to have ECT or change her medication. She decided against ECT because she didn’t know enough about it.

Age at interview: 41
Sex: Female
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I think what they didn’t do is they didn’t really explain anything about it. It was, it was just, they just said, “Right, there’s a decision. You can have ECT or you can change your medication.” But there was no discussion about what ECT was, what it would involve, how many sessions I would have, you know, side effects, all that kind of thing. I think, because I wasn’t given any information, I d-, how on earth was I supposed to decide with not being given any information? It was just like, “Well, come back to us when you’ve decided what to do.” But, you know.

And what did you think ECT was? I mean you described sort of having seen it on TV and that sort of thing.

Well, that, yes, that’s exactly it. That’s, that’s, I thought it, well, I really thought, you see people, I mean they talk about obviously being, you know, being given an anaesthetic to be given ECT, and I’m thinking, “Well, why do people jump about when they’re given ECT? You know, I don’t know. What’s that about?” And then coming round, obviously other patients, you see them when they’re coming round. They didn’t know where they were, they couldn’t walk properly, having a really severe headache, memory loss, quite significant for some people afterwards. And somebody did say that they felt that they’d been permanently damaged by it. And all of that kind of information, it was like, “Well, actually I don’t think I want to, really want to go through with this.” 

You were saying somebody said, was that from literature or somebody you knew?

It was in the, in the wards, yes, it was other people in the wards kind of saying, saying things like that. And I think it probably would have been more helpful to have had some discussion with the medical team exactly to clarify all the different kind of questions that I had about it and my husband had about it. And to also cla-, sort of explain to them what I’d heard from other patients and actually, “Is, are these experiences real experiences and is it something to watch out for? What, what’s the percentage of incidence of that happening?” that kind of thing. But there was no kind of information that came forward about that. 
Some complained that there was too much pressure for them to agree to ECT, and they would like health professionals to be more patient in allowing them to decide. Those who had ECT over twenty years ago felt particularly pressured. Beattie felt that she was being ‘badgered’ to have the treatment when she had postnatal depression so she eventually consented. When Albert had ECT in the 1960s he felt he had to sign the consent form otherwise he’d be sectioned: “I didn’t want to become an inmate in the place so, that’s why I signed it”.
 

Although Cathy felt that ECT was an effective treatment, she didn’t feel she had much choice. She found making any decisions when she was severely depressed “quite hard”.

Although Cathy felt that ECT was an effective treatment, she didn’t feel she had much choice. She found making any decisions when she was severely depressed “quite hard”.

Age at interview: 49
Sex: Female
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Oh, yes, how much choice. No, I mean it, you know, when you’re offered it you’re not in a good place, you’re severely depressed, and, you know, making any sort of a decision is hard, let alone one that important. And, you know, I mean I’m sure I must have been given the choice. It, I wasn’t under a Section or anything, so I would have been given some choice. But I don’t know what would have happened if I’d said no. They might have come up with some other plan.

But I’m just sort of thinking about, you know, being very severely depressed --

[mhm]

-- and having to make these sorts of decisions. Is it possible to explain to me what that feels like and why, you know, making decisions might be so challenging?

I’m not really sure why it is so difficult, but when you are severely depressed, to make a decision is quite hard. Even, you know, a simple decision like, “Shall I get up?” or, “Shall I have coffee or tea?” or, “What shall I put on today?” is, can be, you know, really huge. And, yes, so making a decision about something as big as ECT is, in a way it’s a shame they can’t ask you when you’re well and then you could make an informed decision. But, you know, concentration is hard when you’re depressed, and somebody sitting there next to you trying to explain to you what all this is all about and you can’t concentrate, and, and then they’re saying, you know, “Do you want this treatment?” And it’s not the right time to be trying to make such, what is actually quite a huge decision, that, you know, that you’re going to go through with this treatment that, you know, is, well, not very nice [laugh].
Carers said being involved in the decision could put pressure on the relationship. Suzanne’s husband said he was consulted about whether she should have ECT and found this very stressful. Having a carer agree to the treatment made some feel they didn’t have much control over the whole treatment. Yvonne said when she found out her estranged mother had given permission for the ECT she felt very angry.
 

Lorraine and Annie felt the consultant gave too much detail about the ECT process to their mum and that she didn’t really need that much information. They felt she just wanted whatever was going to make her better.

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Lorraine and Annie felt the consultant gave too much detail about the ECT process to their mum and that she didn’t really need that much information. They felt she just wanted whatever was going to make her better.

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Well, he directly asked mum if she wanted ECT, not me and Annie, you know. And she just looked at him vacantly like, “What did you mean?” you know. So we had to come in for her because, you know, and we said, “Well, you know, I don’t, mum will probably sit there and say, ‘Well, what is it?’” And, but she wasn’t even capable of doing that at first. She just sat there like, “What’s he talking about?” you know. And we’d say, “Mum, he’s asking you do you want this ECT treatment.” And then the doctor explained to, you know, in graphic terms what it was. But at the time she wasn’t really compos mentis to take it all in anyway. And I think that helped in a way. Because I think if she was she might have been like, “Oh, no, I don’t want that” you know. I don’t know. But, so we said like, “Oh, you know, what do you think, as you know, as you know?” 

And he says, “Well, I need your mother to understand what it is. I need your mother to tell me ‘yes’ or ‘no’ and sign this. And, you know, she doesn’t have to go when she’s signed it but, you know, I need to know.” And that’s just what he was like with her. He was, he, you know, telling her, he told her about three different, three different times she went to see him before she actually had ECT, and what it was and what would happen. And in the end mum said, “And if it’s going to make me better then I’ll have it.” And that was her words really.
 

Sue was under section when ECT was recommended as a last treatment option, and felt she wasn’t in control of the situation. Her husband, Ian, consented for Sue to have ECT and this had serious consequences for their relationship.

Sue was under section when ECT was recommended as a last treatment option, and felt she wasn’t in control of the situation. Her husband, Ian, consented for Sue to have ECT and this had serious consequences for their relationship.

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Because I feel like I’ve been, I think abused is a strong word. But I feel I was put in a position where I didn’t really have much choice. I mean the anaesthetic was sort of like an emotional way of holding me down. And of controlling me, which put me in mind of what happened in the past.

And I really, I didn’t feel as if I had much control about the situation, once it has been initiated and I think because Ian agreed to it, I thought well he must think it’s good, and having read the leaflets I thought well I suppose I’ll give it a go. But I didn’t feel like I had much control about the whole situation. And because they just kept slapping different sections on me and I thought how long am I going to be here and what’s going to happen. And also I didn’t know an awful lot about the Mental Health Act then and the different types of sections and I knew that can insist on you having treatment. And they can actually, essentially, not force you to have it, but suggest it in a legal sense as long as they get another doctor in to sort it out, if it’s going to save your life, not eating, not drinking, which I wasn’t, and if they thought that it was having a huge negative effect not having, doing these things then for health reasons they could sort of like force you to have it. 

Again I think force is a strong, strong, strong word, but they were the fears that I had, as I had to go along with it anyway. 

And I have strong control issues as well. Well it was very distressing, and I think there was a huge impact on our relationship. There was a lot of… I felt like Ian and I were drawing apart and then I also blamed him for agreeing for me to have the ECT. You know, a certain amount of, you know, if you hadn’t agreed I wouldn’t have been in this position. 
Having had the treatment and knowing that it worked led some people we spoke to to draw up advanced statements giving consent to having ECT in future if their illness became very bad. David Z said he found ECT was “short and sweet and to the point” and it gave him relief where antidepressants hadn’t.

Last reviewed January 2018.
Last updated January 2018.
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