The open-access journal Life Sciences, Society and Policy has recently published an article about electroconvulsive therapy (ECT) by Patrick Seniuk, a doctoral student at Södertörn University, Stockholm, Sweden (“I’m shocked: informed consent in ECT and the phenomenological-self”).
The author sets out his aims: “using phenomenological philosophy as an analytical framework, my intention is to investigate the risks and harms associated with ECT, and the way patients are informed about the potential side effects.” He argues that informed consent fails to “prepare patients for the possibility that treatment side effects have implications for future lived experiences” and that it is “crucial to recognize that patients, while able to rationally ‘understand’ memory loss is a potential harm, might fail to appreciate memory loss might interfere with everyday life.”
I think these statements are very pertinent to current discussion and controversy about ECT. You don’t have to look far to encounter people who were misled about the damaging effects of the treatment. But weren’t they warned? didn’t they sign something? is a reasonable reaction. Seniuk’s argument is that, yes, they were warned, but not in a very useful way.
“I argue that the common experience of post-procedure retrograde amnesia will necessarily affect a patient’s sense of self. For depression patients who retain the capacity for autonomous decision-making, current bioethical attitudes about ECT and informed consent fail to adequately appreciate how ‘loss of memory’ is interwoven with, and inextricable from, the patient’s experience of self.”
Using the American Psychiatric Association’s template for a consent form, Seniuk points out that, even with its warning that people may be left with permanent gaps in their memory, especially for events close to ECT, it fails to address the fact that memory loss “can disrupt both one’s sense of self and life projects”.
No reflection on the author, but the bits about phenomenological philosophy rather went over the top of my head, and I found a few typos distracting (a reflection perhaps on the lack of proofreading by the editors of the journal).
Seniuk’s article contained only a few brief quotes, taken from the literature, from people who had undergone ECT and experienced memory loss. More of their experience, however, is revealed in the other piece of writing referred to in the title of this post. In November 2017 the International Journal of Mental Health Nursing published an article by Australian nurses Karen-Ann Clarke and Margaret Barnes and social worker Dyan Ross (“I had no other option: women, electroconvulsive therapy, and informed consent.”) I don’t have access to the article, but, via researchgate I obtained a copy of Karen-Anne Clarke’s thesis, “Women diagnosed with depression: making meaning and decisions about electroconvulsive therapy. A feminist analysis”.
Clarke has had a nearly 30 year career as a mental health nurse in Australia and has been involved not only in the administration of ECT but also in educating other practitioners on the subject. This perhaps explains why she describes ECT as involving “the passing of a small charge of electricity across the brain” (compared to Seniuk’s “electrical shocks”), as being “highly refined”, and why she quotes uncritically claims that ninety per cent of depressed people who undergo ECT “obtain significant remission of symptoms within nine treatments”. For her thesis, Clarke interviewed seven women who had had ECT, recruited via advertisements. All of the women had been given ECT with their consent in private hospitals since the year 2000, although one woman had previously been treated without her consent and two women had previously had ECT in public hospitals. The women had had between four and 47 treatments. None of the women had received psychological treatment before having ECT, but all of them had been treated with a drugs: “The decision to receive ECT began in the same place for all seven women in the research – with the introduction of the first pharmaceutical agent, usually an antidepressant drug.” One woman had sought treatment with ECT after researching it on-line, the other six were persuaded to have ECT on account of their “failure to respond” to drugs. Clarke argues “that women may be left disempowered and isolated in vulnerable states of decision-making by powerful and privileged medical experts” and recommends changes to clinical practice, including “the need to challenge the biomedical understanding and medicalisation of women’s distress, the need for an ongoing critique of the power that lies behind the dominant medical discourse…”
Although Clarke was not specifically investigating the effects of ECT on memory, it emerged as a common experience in the interviews, “and the impact on personal identities and associated social roles was one that the women did not feel well informed about or prepared for.” For example:
“Helen’s memory loss following ECT was significant. Her son had two separate engagement parties – one at the family home, and was married in 2009. Helen has absolutely no recall of either party, and only minimal recall of the wedding. She feels that this part of her life was stolen. Although ECT stopped her from the intrusive suicidal thoughts, it stripped her of other powerful memories. Although her husband and children are supportive of her memory loss, it has become a family joke. Helen chuckles at this point – frequently her family will laugh and remind her that she has lost a particular memory. She thinks it is ironic; they could fill in the gap in her memory with anything, and she would have no choice but to believe them. She describes losing self-confidence along with her memory.”
Pauline described not just amnesia for events in the past but also difficulties with learning new skills:
“She is convinced that ECT interfered with the way that she processes information and the way in which she is able to problem solve at both a concrete and abstract level. She still has enormous difficulty in organising her home and housework, and cooking basic meals for herself. She attributes this to the effects of ECT. At the time of our research conversation, Pauline had recently begun working for very short periods of time each week and found the challenges of learning new skills enormously stressful, requiring vast amounts of repetitive practice.”
Kate only had four treatments but experienced problems:
“After ECT, Kate could not recall the faces or names of anybody at church, regardless of how long she had known them. Even today, years after ECT the effect is still pronounced.”
Australia has a high use of ECT, and Queensland, the state where Clarke is based, has the highest rate of use of any state, at least according to the 2014-15 statistics she quotes with the caveat that they may not be accurate and in any case only include Medicare (publically funded) treatments. She also gives a table showing that over 70 per cent of (Medicare) ECT is given to women. In the 25 to 34 age group, treatments given to women outnumber those given to men by more than five to one. Clarke says that the reasons for this remain obscure and are outside the scope of her thesis, although she does say that she has noticed in the hospitals where she worked that men with similar symptoms to women were less likely to be prescribed ECT. Indeed, it was this observation that inspired her to choose the subject of women and consent to ECT for her thesis.