Managing mental illness and recovery
In the past, people with serious mental health problems were often expected not to recover. Attitudes are changing, and many charities and health services now...
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.
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.
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.
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.
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.
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.
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.
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.
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.
Getting information about ECT
People we spoke to had often received information about ECT from medical health staff in the form of a leaflet or through a discussion with...