The following themes were identified:
This theme captures accounts that describe the knowledge, sources of information and attitudes participants had prior to receiving ECT.
For many participants, ECT was perceived as an outdated method of which they had little knowledge before undergoing it themselves. Many participants had associations from movies, a musical (‘Next to Normal’), media or figurative art, which were often dramatic ECT representations. When the clinicians proposed ECT as a treatment, some participants were motivated to try it, as they had not responded to other treatments. For many of the participants, however, the first reaction was fear or hesitation. As one participant noted:
“I remember the first time the psychiatrist in the private health service proposed it, and I totally—I completely freaked out at the thought”. (P.2)
One next-of-kin present in the interview and two participants were health professionals and had more updated information. Two younger participants, who were not hospitalized when ECT was proposed, discussed the choice of ECT with their clinician thoroughly and actively sought information. One participant mentioned that she watched a YouTube video: “I was just curious how it was going to be because you’ve only seen it on TV, right? And it looks different, and I had seen some videos somewhere, and there they show exactly how it is, and it’s not so bad”. (P.20) The other younger participant referred to more contemporary and public personalities that had received ECT, such as actress Carrie Fisher or writer Ernest Hemingway. This participant noted that he was aware of Hemingway’s negative account of his experience, but he was determined to look beyond the often-negative representations of ECT and associated risks in popular culture, so he turned to academic articles for information instead.
The experience of informed consent
This theme brings together the experience of consent from information received in the clinic, perceptions of decisional capacity and support in decision-making.
Participants’ experience with information received in the clinic varied. Some participants thought the information they received before treatment was sufficient—they did not have unanswered questions, and felt involved in the decision. Others were more hesitant, needed more information, and time to think and discuss. Many did not recall signing an informed consent form but recalled that they were presented with some information explaining how modern ECT was different from earlier ECT approaches. Participants also described experiencing care from nurses and anaesthetists, who reduced their anxiety by explaining procedures.
Many participants reported that their consent was based on short conversations with the psychiatrists, nurses or other patients, in the absence of written or more patient-friendly information: “I got a bit unsure after I signed the consent about what treatment implies. Then a nurse came with a folder with some information”. (P. 9) One patient in her teens learned about ECT from her co-patients, many of whom had been diagnosed with schizophrenia. She also mentioned that she was not inclined at the time to think about long-term consequences: “I had had anaesthesia before and I thought it was exciting. And that moment before you fall asleep—that thrill was very attractive. I was a bit there at that level, so I did not think through at all. (P. 5) Participants had different needs for information and many reported experiencing reduced capacity and motivation to process information and make decisions: “I can’t think how they could have informed me differently, because no matter how they would have formulated it, I wouldn’t have felt capable of consenting”. (P.10) Some participants reported that presentation of ECT as a last resort made them more passively accept the decision. Five participants had been hospitalized under the Mental Health Act and although they did not receive involuntary ECT, they recall that this reduced their assertiveness.
Support in decision-making
Many participants also reported that information delivery was not enough, as they lacked engagement and support in decision-making from health professionals. One participant, a health professional herself, had a positive experience with ECT, and pondered whether she could have been more actively involved in the treatment. She describes how she had refused ECT in her first depressive episode. In the second episode, her physician suggested ECT much more rapidly. She was also more motivated to agree on ECT this time as she found her emotional pain unbearable even if only for some weeks.
“I was a calm patient so I don’t understand why they did not bring [ECT] up to me, but I had some paranoid thoughts and it isn’t easy to make a patient take their medication like that (…). I wish they would have worked more with me to make me understand that I’m not locked in an acute ward, [that] they don’t want to hurt me. [I wish they had] talked to me, but it’s easy to say that in retrospect”. (P. 21)
Many mentioned the importance of repeated discussions, or being provided written material with more information, at different time points. “I believe talking is better than a leaflet on depression. When you’re depressed, you can’t really take it in, there has to be somebody who sits down with you and repeats and repeats that same thing many times”. (P.21).
Participants who had prior experience with ECT noted that this made them more assertive at the next treatment: “After the previous hospitalization, they knew me a bit—I was part of the decision. So the doctor asked me, ‘So what do you think you need?’ And I said ‘ECT has helped me before’. Then she went, ‘Okay, so we’ll do it this way. (P.10).
Some participants in this study mentioned that they discussed the decision with family members but they would have liked to talk to or listen to others’ experiences of how they dealt with their thoughts or fear. This would have helped them ask questions about how ECT ‘feels’ and assist their decision-making.
Information on adverse effects
Almost all participants were anxious about memory loss, and reported that they received information that adverse effects, especially regarding memory, would be short-term and reversible. Some, but not all, received information about the risk for longer-term effects.
I don’t remember the information given in 2011, but in 2013 I remember ECT was mentioned as a possibility because I had problems with medication. But in 2013, I remember I specifically said that I was worried my memory would be affected. And the clinician took it seriously but managed to convince me that it would only be for a short period of time, and all the evidence says that—that memory comes back but that it varies. I wonder whether this variation has to do with the number of treatments. (P.19)
The participants who experienced antidepressant effects of ECT without adverse effects were more likely to report that they were cognizant of ECT’s adverse effects, but less aware or convinced of beneficent effects.
The need for in-depth information on ECT
This theme brings together participants’ claims about the need for varied information throughout the treatment period.
Available general information
Participants continued to try to make sense of ECT throughout the treatment period, and they expressed having an overall lack of knowledge during this time. They were interested in information about specific aspects of treatment, including statistics, brain science and others’ experiences. “I think that people missing more specific research and publishing around the results is a recurring topic—there isn’t even a national registry. (…) I always have an underlying feeling that ECT isn’t researched enough”. (P. 19).
Present ECT earlier
The participants who had experienced antidepressant effects without long-term cognitive adverse effects reflected on whether ECT could have been presented as an earlier option. Participants proposed that both health professionals (e.g., GPs) and society in general should be updated with knowledge about ECT’s antidepressant effects to balance the information on risks: “That there’s a treatment that can actually really save you (…), because I wasn’t really aware of it (…), and I’ve experienced a lot of adverse effects with medication. (P. 19).
Other participants had several ECT series, and did not recall that they could discuss the different concerns about memory or brain throughout the treatment period: “What was completely missing was information on the long-term perspective (…) because one thing is the first time, or the second, but for me who’s had almost 10 rounds, what happens then? It hasn’t been a topic.”(P.2) One participant expressed the need for more information on brain health and self-care after what she felt was a very intrusive intervention: “Another thing I wish I’d had is information that the brain is vulnerable after having had ECT, so even if you feel normal it’s still important to have a calmer lifestyle—yes, and reduce [your] activity level when you come home (…). I felt that my brain was vulnerable and I got back a feeling of sadness and got easily tired when I came back home”. (P. 21) In particular, the participants who underwent repeated ECTs expressed their worries, and a need for information, about the treatment’s effect on the brain. One of the participants—a woman in her 60s—described how her fear of dementia could lead to her underreporting of memory problems, and she wished this aspect was addressed in her conversation with the clinical team. She also gave herself quizzes to assure herself that her memory was not deteriorating.
Encountering different attitudes
The general lack of information, together with encountering varying attitudes among health professionals, gave participants an understanding of ECT as a less-scientific and second-best treatment. One participants noted: “I think that it’s important for those who are for this treatment—it’s almost like they have to defend it (…) and I’m thinking they don’t need to. They are experts— [they should] put it forth as neutrally as possible … Now I feel that it gets very difficult for the patient, that you experience scepticism on the one side, from psychologists that can say ‘I don’t believe in it’, and all of a sudden you’re hospitalized in an acute ward, which strongly supports ECT. (P. 19)
Life after ECT
This theme brings together descriptions of adverse effects and ways participants dealt with these experiences.
Post ECT expected amnesia
Seven participants reported that they only experienced amnesia for the period before and after ECT, which they had been informed about it. Two of these experienced some reduced memory function, such as struggles to remember text when reading. They were satisfied with the ECT overall, and they were not certain whether to attribute these struggles to ECT. A few participants told of neuropsychological monitoring tests during ECT and a few treatment sessions were stopped due to confusion. For some participants, even the short-term temporary confusion and lack of memory around everyday knowledge represented experiences that had a strong impact on their sense of self: “what I reacted on was that they say it’s only trivial things you forget but I forgot much more” (P. 9).
More memory struggle than expected
Eight participants experienced more memory struggles than described in the consent information. These participants describe dysfunctions like struggling to remember names and appointments, less concentration or a slower processing speed. They conveyed that, though they were able to regain some of their memories or knowledge, and some were able to study, it felt like a greater struggle to remember: “It’s okay with remembering—I remember/memorize normally, it’s just that I don’t remember like I used to. It’s different”. (P.10) Another participant told: “But that I don’t remember that wedding—I was hospitalized at that time, and because usually you talk about things, and it takes a few years to find out, and I know where it was, just that I wouldn’t know if nobody ever asked me (…) or if I didn’t have pictures of it”. (P. 5).
Several participants reported that the general feeling of inferior cognitive performance after ECT sometimes affected their social life and self-confidence, although it appeared tolerable for some: “Now I can almost start doubting what someone else said: Did they say it or not, how was it actually? Before, I was stubborn, I used to be, but now I can’t be that stubborn because I don’t have control of what I remember or not. But I think it’s also a matter of practicing”. (P.20).
When costs are higher than benefits
Six participants held more strongly critical views towards ECT given the costs to memory, but also lack of adequate information or acknowledgement. They discovered that they still had cognitive struggles some time following the treatment, in social and work-related contexts; they noted that these contexts triggered their lack of ability to recall events or knowledge. One participant described how it took some time to discover these difficulties: “It took a few years before I was aware because I wasn’t very attentive to it, and I would’ve discovered it faster if it would’ve been today. But then I wasn’t very interested in remembering things—I didn’t need my brain. I was in high school at that time, and I took my exams and I was doing fine” (P.5). Some participants spoke of ‘holes’ in their personal memories, and the experience of unrecoverable memories had a strong impact on their sense of self. Especially one participant described that severe loss of memory made her feel she lost herself: “it’s like I have not existed before” (P. 14). A few others experienced that they also lost knowledge related to their work life that they could not recover.
The participants who experienced memory struggles told of strategies they employed to reconstruct their autobiographical memory, like looking at photo albums, talking to friends and family, and ‘doing the work of tying together loose threads, so I spend some time on reading [medical] logs and asking family what they remember’ (P.11). One participant described how she had to relearn factual, work-related knowledge: ‘My house was full of Post-it Notes’ (P. 3). Others reported strategies that they used to support memory in their everyday life, such as writing down appointments immediately, taking notes or repeated reading.
Lack of support
While in treatment, only one participant told of a nurse who kept a log for her during the treatment time: “I don’t remember very much from that time period but my responsible nurse wrote a diary which is worth gold now”. (P. 7) Participants pointed to a lack of available information that could help them understand and cope with their experience of coping with adverse effects after discharge. They conveyed that they would have liked to know about others’ experiences in order to understand their own. While some participants found others to talk to, or read about others’ stories with ECT, overall, they reported scant access to reliable sources. Many participants acknowledged that discerning the underlying cause of memory problems is a complex issue, and that it is challenging to distinguish the effects of ECT from those of illness or medication. They also described a disconnect between their experiences and professionals’ understanding, as the latter often attributed memory complaints to depression and were less willing to address participants’ concerns about cognitive functioning: ‘I feel that those that inform are not up-to-date about how much it actually is [memory loss]’ (P.1).
One participant who experienced side effects, which she found troubling, was referred further to the neuropsychologist by her treating psychiatrist, although this is not standard practice. However, she reported that the session with the neuropsychologist did not bring more understanding, comfort or support. Instead, her psychologist addressed some of her concerns:
“Like my psychologist said, ‘You still have the ability to learn’. So luckily I haven’t gotten Alzheimer’s, but I have to repeat and repeat and it isn’t enough that I go that route one more time”. (P. 19) Some accepted the cost and felt they could live their life despite these limitations. Others were more resentful of the lack of information, support and acknowledgment.