ECT linked to impaired short-term memory

While long-term memory appears to be preserved in depressed patients
undergoing maintenance electroconvulsive therapy (ECT), these patients may
suffer short-term memory impairment and frontal function alteration, claim
investigators.

“Memory impairment is the main neuropsychological problem associated with
acute ECT, but the specific subtypes of memory dysfunction associated with
maintenance-ECT remain unknown,” observe Miquel Bernardo (Hospital ClÌnic,
Barcelona, Spain) and colleagues.

To investigate, they assessed memory, attention, and frontal function in 11
patients with depression in remission, who had received an average of 36.1
previous ECT sessions with a mean intersession interval of 52.7 days. These
were compared with 11 age- and sex-matched patients with depression who had
not received ECT.

There was no difference between the two groups with regard to long-term
memory or in attention function.

However, encoding of new information and performance on most tests of
frontal function were significantly impaired in the patients receiving
maintenance ECT. Compared with controls, these patients also showed
alterations in verbal fluency, mental flexibility, working memory, and
visuomotor speed.

Thus, maintenance ECT for patients in this study was characterized by
“normal long-term memory, while frontal functions and short-term memory were
impaired,” say Bernardo et al.

“Further studies are required to establish the cognitive state in patients
during maintenance ECT, as this will help to determine their quality of life
and everyday functioning during treatment,” they conclude in the journal
Psychological Medicine.”

Psychol Med 2003; 33: 345ñ350

A shocking treatment?

May 2003
The Psychologist
Vol 16 No 5

A shocking treatment?
Lucy Johnstone

A psychologist recently suggested that commenting on electroconvulsive therapy (ECT) was outside our arena of professional responsibility (Gelsthorpe, 1997). I disagree.

Although clinical psychologists do not prescribe ECT, those who work in adult mental health or with the elderly will inevitably be present at meetings in which ECT is suggested as an intervention, and may have patients who have been given it. ECT may be a factor in an assessment of memory or cognitive impairment. Physical treatments such as ECT convey important messages about the nature and causes of mental distress, which may contradict or undermine our psychological interventions. ECT may be a source of psychological trauma and distress in its own right. And, of course, any of us or our friends and relatives could one day be in the position of deciding whether to have ECT ourselves. We may also, after consideration of the evidence, feel that the administration of ECT involves ethical issues that transcend professional boundaries. For all these reasons, the use of ECT should be a matter of concern to all psychologists.

Still widely practiced

Contrary to popular belief, ECT is still widely practised; it was given to approximately 11,340 patients in England in 1999, compared with a peak of around 28,000 in 1985 (Department of Health, 1999.) Of these, two thirds were women, 41 per cent were over 65, and 15 per cent had ECT under section, or without consenting. It is rarely used in Italy, Japan, Germany, Slovenia, the Netherlands and Austria, and is used much less in many other European countries than in the UK.

A course of ECT consists of four to twelve individual treatments in which an electric current is passed through an anaesthetised patient’s brain, triggering an epileptic seizure (Royal College of Psychiatrists, 1995). ECT was introduced in the 1930s on the basis of an inaccurate belief that epilepsy and schizophrenia were incompatible conditions, and therefore, by a form of backward logic, inducing a seizure might cure psychosis. Ugo Cerletti, the Italian psychiatrist who is credited with the invention of ECT, gave a chilling account of the very first administration to a tramp, who broke out of his habitual incoherence to beg ‘Not another one! It’s murder!’ (Frank, 1978). Before muscle relaxants were used, fractured ribs and limbs were common.

Current psychiatric opinion is represented by the Royal College of Psychiatrist’s ECT Handbook (1995), which states that ‘ECT…is an effective treatment in severe depressive illness’ and occasionally also in other conditions such as psychosis and mania. In contrast, organisations like ECT Anonymous, along with many service users, have campaigned for the abandonment of an intervention that they describe as ‘barbaric and destructive’ (Lawson, 1992).

Underlying principles

The use of physical interventions in mental distress is justified, at least partly, by the assumption that mental illnesses have some biological (biochemical or genetic) causal mechanisms. The great majority of ECT research, including the recent health technology appraisal of ECT commissioned by NICE (see weblinks), is situated firmly within this biomedical paradigm. But while it is obviously true that all emotional and psychological states have their physiological correlates, it is important to be clear that no hard evidence for primary causal factors in depression has ever been reliably identified. As David Healy has written, ‘there is no known lowering of serotonin in depression’ (Healy, 1998, p.8).

It is also important to note that no biological mechanisms for the action of ECT have been reliably established, although many have been proposed. Richard Abrams, author of the standard textbook Electroconvulsive Therapy, sums up the situation:

Modern ECT researchers…do not have any more of a clue to the relationship between brain biological events and treatment response in ECT than they did at the time of the first edition of this book – which is to say, none at all. (Abrams, 1997, p.268)

This means that statements such as that found in the Royal College of Psychiatrists (1997) factsheet – ‘Repeated treatments alter chemical messages in the brain and bring them back to normal’ – are, to say the least, purely speculative, and highly misleading when presented to patients (or anyone else) as established facts. We should also be careful about the terms ‘works’ and ‘treatment’. By definition, ECT cannot be a cure if we have not established either the biology of depression or ECT’s mechanism of action. Nor can it be described in any specific sense as a ‘treatment’ for depression, or for any other form of mental distress.

The above considerations also make it especially important to take service-user reports into account, especially if they say (as about one third of them do) that ECT is distressing to receive and has side-effects such as memory loss (Rogers et al., 1993; United Kingdom Advocacy Network, 1996). Unlike the case of, for example, chemotherapy, which also has side-effects and is distressing to receive, ECT cannot be justified on the grounds that it is effective at an underlying biological level. We are dealing here with mental states, not physical ones; and if people say that they feel worse after ECT, we have to accept that they are worse.

Does ECT help?

The use of ECT is justified, if at all, in empirical practice. Many psychiatrists claim that in their clinical experience ECT is effective or even life-saving, especially in severe depression. However, such assertions need to be backed up by research evidence, which is mostly lacking. Much of the research in this area is of very poor quality – failing, for example, to include follow-up periods or control groups (Clare, 1993). The picture is further clouded by the fact that papers are often quoted misleadingly or inaccurately – papers that are commonly quoted as support for ECT’s efficacy repay careful reading. For example, Greenblatt et al. (1964) appears to be the source of the common claim that ECT is effective in 8 out of 10 cases (made, for example, in an unreferenced statement in the Royal College of Psychiatrists’ 1997 factsheet on ECT). In fact, the response to ECT in this study was equalled by that to antidepressants.

The Royal College of Psychiatrists’ ECT Handbook states that it is established as an effective treatment, and quotes Buchan et al. (1992) in support. This careful study (generally considered to be the best set of trials yet) compared sham (that is, the procedure but with no seizure) and real ECT and followed patients up at four weeks and at six months. It concluded:

  • ECT did have some beneficial effects, but only on those patients whose depression was accompanied by physical retardation or delusions (a very small minority of those who are diagnosed as depressed). In their words, ‘real ECT does not appear to be effective in non-retarded, non-deluded patients’ (p.359).
  • This benefit was apparent at four weeks. At six months there was no difference between treatment and placebo groups.

Other trials (e.g. Gregory et al., 1985) confirm that benefits are short-term. A number of other reviews (e.g. Breggin, 1997; Cauchon, 1995a; Skrabanek, 1986) have generally been unable to find any controlled studies that showed benefits lasting longer than four weeks.

In summary, there is reasonable evidence that ECT can be effective, in the short term and within the provisos about ‘effectiveness’ outlined in the introductory points, for a small subsection of those who are severely depressed. But sound evidence for the effectiveness of ECT in other conditions is lacking. For example, a Cochrane review found only limited evidence to support its use in schizophrenia, the condition for which it was originally indicated (Tharyan & Adams, 2002). It is also widely acknowledged by psychiatrists that the relapse rate is high (Royal College of Psychiatrists, 1995), and there is no evidence that benefits last more than four weeks.

Does ECT prevent suicide, or death through refusal to eat?

ECT is sometimes given in the belief that the risk to the patient’s life will be reduced. There is, however, no hard evidence that ECT prevents suicide. The paper often quoted in support of this view (Avery & Winokur, 1976, p.1033) in fact states: ‘In the present study, treatment was not shown to affect the suicide rate.’Various other studies (Black et al., 1989; Fernando & Storm, 1984; Milstein et al., 1986) have also failed to find any reduction in suicide rates.

The idea that ECT may increase the risk of suicide has never, to my knowledge, been discussed in the literature. However, it must be borne in mind as a possibility. The most famous example is Ernest Hemingway, who told a friend: ‘What is the sense of ruining my head and erasing my memory, which is my capital?… It was a brilliant cure but we lost the patient.’ (quoted in Frank, 1978.) He killed himself a few weeks later. Biographers of Sylvia Plath have argued that fear of being given ECT again was a significant factor in her suicide (Rowley, 1998). The family of Joseph Docherty, who killed himself after warning staff that he did not want any more ECT, was recently awarded a large settlement (Daly, 1999).

The Buchan et al. (1992) study summarised earlier is relevant to the situation where patients are refusing food. They did find, as noted above, that very severely depressed patients had some short- term benefits from ECT. But an earlier version of the trials concluded that ‘many depressive illnesses, even if severe, may have a favourable outcome with intensive nursing and medical care even if physical treatments are not given’ (Johnstone et al., 1980). So it seems reasonable to offer alternatives to ECT even for the small number of people who may show short- term benefits from it – including those who are suicidal or are refusing food.

In any medical treatment the benefits must be weighed against the risks. In the case of ECT this means asking not only ‘Does it help?’ but also ‘Does it do harm?’

Can ECT do harm?

The practice of ECT has long been acknowledged to be unsatisfactory, even by those who see a place for it (Kendell, 1998). In the last 25 years the Royal College of Psychiatrists has carried out three large-scale surveys (Duffett & Lelliott, 1998; Pippard, 1992; Pippard & Ellam, 1981), but even the most recent one found that there were still serious deficits in the administration of ECT, with only one third of clinics meeting RCP guidelines. For example, staff were poorly trained and supervised, and some clinics used machines that did not allow a sufficiently wide range of current to be delivered, so that patients with a low seizure threshold, which can vary up to fortyfold between different people, were at risk of receiving too high a dosage.

This risk is particularly important given Pippard’s (1992) assertion that ‘cognitive function is liable to be more impaired the more the stimulus exceeds threshold’ (p.632). This amounts to an admission that cognitive impairment is currently unavoidable for an unknown number of ECT recipients. A former president of the Royal College of Psychiatrists has warned that this is a scandal waiting to erupt (Kendell, 1998).

The same survey indicates that twice as many ECT treatments are given per head of the population in the North West compared with London, while a previous survey found seventeenfold variations between different hospitals and even greater ones between different consultants (Pippard & Ellam, 1981). This suggests a lack of agreement about good practice with the possibility that many people are receiving ECT unnecessarily.

The issue of possible harm by the very nature of the intervention, even where guidelines are followed, is, of course, highly controversial. Despite the technical problems described above, it is asserted that ‘repeated studies over 50 years have failed to reveal any memory loss beyond the first few weeks’ (Freeman, 1992). The Royal College of Psychiatrists’ factsheet states that it is ‘among the safest medical treatments given under general anaesthesia’ and that ‘as far as we know [italics added] ECT does not have any long term effects on your memory or intelligence’. (The phrase I have italicised was added in the 1997 version.)

Critics of ECT have summarised a large body of evidence which, they say, has been overlooked, misrepresented or ignored (see e.g. Breggin, 1997; Frank, 1990; Friedberg, 1976; Morgan, 1991). They claim that general mental and emotional dysfunction, not just memory loss, is a consequence of ECT, and they cite evidence of abnormalities and brain damage from animal studies, human autopsies, human brainwave studies, MRI scans, case histories, memory tests, and so on. They point out that the idea that ECT causes brain damage was first introduced by its advocates, who considered that this was a price worth paying: ‘The evidence assembled from the various fields of investigation in regard to shock therapy points definitely to damage to the brain.’ (Freeman and Watts, quoted in Frank, 1978, p.17.) Some critics also point out that an accidental shock to the head strong enough to cause a convulsion, perhaps from a faulty domestic appliance, would normally be treated as a medical emergency (Breggin, 1997).

It is also worth noting that several studies have found increased mortality rates in ECT patients compared with patients not receiving ECT (Babigian & Guttmacher, 1984; O’Leary & Lee, 1996; Tsuang et al., 1979). While the precise reasons for this are unclear, it seems that any short-term benefit may be bought at the expense of higher long-term risk of death from various causes.

It is sometimes forgotten that the administration of ECT inevitably carries some risk of mortality if only because of the use of a general anaesthetic. In Texas, which keeps a record of all deaths that occur within 14 days of ECT, the mortality figures for the elderly stand at 1 in 200 (Cauchon, 1995b), mostly due to cardiac problems. These are important facts to set against the argument that ECT can be life- saving in elderly severely depressed patients, who are the largest group receiving it, both with and without consent.

What are the psychological effects of ECT?

Surveys show that 30–43 per cent of people find ECT helpful. However, up to a third of all those who undergo ECT report that it was a very distressing experience (Rogers et al., 1993; United Kingdom Advocacy Network, 1996). Recent research (Johnstone, 1999; MIND, 2001) shows that people may react to ECT with strong and enduring feelings of terror, shame, humiliation, failure, worthlessness and betrayal, and a sense of having been abused and assaulted. Some experience ECT as a damaging repeat of earlier traumas, including physical and sexual abuse. An underlying theme was a profoundly different understanding of depression to the professionals; these people believed that they had broken down for reasons which a physical intervention obviously could not address. They were left with their emotional difficulties compounded, and their trust in mental health professionals undermined.

How does ECT ‘work’?

In the absence of established theories about ECT’s mechanism of action, the question of how it works (in the cases where it does seem effective) becomes particularly important. Peter Breggin, an American psychiatrist and long-time opponent of ECT, has argued that its effects coincide precisely with the known sequelae of any trauma to the brain – the acute stage of confusion, headache and nausea, followed by a period of emotional shallowness, denial and artificial euphoria that usually wears off after four weeks. The loss of painful memories may also be experienced as a relief. He believes that it is this state that is sometimes mistaken, by staff and patients, for improvement. In this view – shared by others who oppose ECT – brain damage is not just a risk at a few clinics with outdated equipment, it is the basic mechanism of action in every case. ‘There can be no real disagreement about its damaging effects. The only legitimate question is: How complete is recovery?’ (Breggin, 1997, p.140.)

Ethical issues

If the critics of ECT are right, then the decision to administer it becomes more complex than an evidence-based assessment of the risk–benefit ratio, such as that carried out by NICE. It becomes an ethical issue as well. In the words of neurologist John Friedberg:

Assuming free and fully informed consent, it is well to reaffirm the individual’s right to pursue happiness through brain damage if he or she so chooses. But we might well ask ourselves whether we, as doctors sworn to the Hippocratic Oath, should be offering it. (Friedberg, 1977, p.1013)

These sentiments have been strongly echoed by service users: ‘It is not justifiable to give people something that harms their brains and gives them an epileptic fit on the NHS. It’s just not, in my view, an ethical way to proceed’; ‘It is inhuman and inhumane’ (Johnstone, 1999, p.81).

Equally, if this is an ethical and not just a medical issue, it raises questions for all professionals working in psychiatry and mental health, not just doctors. At the very least we need to inform ourselves about this controversial practice and be willing to enter the debate.

■ Lucy Johnstone is Academic Tutor on the Clinical Psychology Doctorate, University of Bristol. E-mail: L.C.Johnstone@bristol.ac.uk.

References

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Avery, D. & Winokur, G. (1976). Mortality rates in depressed patients treated with electroconvulsive therapy and anti-depressants. Archives of General Psychiatry, 33, 1029–1037.

Babigian, H.M. & Guttmacher, L.B. (1984). Epidemiological considerations in electroconvulsive therapy. Archives of General Psychiatry, 41, 661–672.

Black, D.W.,Winokur, G., Mohandoss, E., Woolson, R.F. & Nasrallah,A. (1989). Does treatment influence mortality in depressives? Annals of Clinical Psychiatry, 1(3), 166–173.

Breggin, P. (1993). Toxic psychiatry. London: Fontana/Collins.

Breggin, P. (1997). Brain-disabling treatments in psychiatry.NewYork: Springer.

Buchan, H., Johnstone, E., McPherson, K., Palmer, R.L., Crow,T.J. & Brandon, S. (1992).Who benefits from electroconvulsive therapy? British Journal of Psychiatry, 160, 355–349.

Cauchon, D. (1995a, 6 December). Stunningly quick results often fade just as fast. USA Today.

Cauchon, D. (1995b, 7 December). Patients often aren’t informed of full danger. USA Today.

Clare,A. (1993). Psychiatry in dissent: Controversial issues in thought and practice. London: Routledge.

Daly, M. (1999, 27 September). Electric shock victims win historic victory. The Big Issue,p.10.

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Duffett, R. & Lelliott, P. (1998).Auditing electroconvulsive therapy:The third cycle. British Journal of Psychiatry, 172, 401–405.

Fernando, S. & Storm,V. (1984). Suicide among psychiatric patients of a district general hospital. Psychological Medicine, 14, 661–672.

Frank, L.R. (Ed.) (1978). The history of shock treatment. San Francisco:Author. Frank, L.R. (1990). Electroshock: Death, brain damage, memory loss, and brainwashing. In D. Cohen (Ed.) Challenging the therapeutic state (pp.489–512). New York: Institute of Mind and Behavior.

Freeman, H. (1992, 14 December). [Letter to the editor]. The Independent.

Friedberg, J.M. (1976). Shock treatment is not good for your brain. San Francisco: Glide.

Friedberg, J.M. (1977). Shock treatment, brain damage, and memory loss:A neurological perspective. American

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Greenblatt, M., Grosser, G.H. & Wechsler, H. (1964). Differential response of hospitalised depressed patients to somatic therapy. American Journal of Psychiatry, 120, 935–943.

Gregory, S., Shawcross, C.R. & Gill, D. (1985).The Nottingham ECT Study. British Journal of Psychiatry, 146, 520–524.

Healy, D. (1998). Gloomy days and sunshine pills. Openmind, 90, 8–9.

Johnstone, E.C., Deakin, J.F.W., Lawler, P., Frith, C.D., Stevens, M., McPherson, K. et al. (1980, 20/27 December).The Northwick Park ECT Trial. The Lancet, pp.1317–1320.

Johnstone, L. (1999).Adverse psychological effects of ECT. Journal of Mental Health, 8(1), 69–85.

Kendell, R.E. (1998).What are royal colleges for? Psychiatric Bulletin, 22, 721–723.

Lawson, M. (1992, 17 December). [Letter to the editor].The Independent.

Milstein,V., Small, J., Small, I.F. & Green, G.E. (1986). Does ECT prevent suicide? Convulsive Therapy, 2, 3–6.

MIND (2001). Shock treatment:A survey of people’s experiences of ECT. London: Author.

Morgan, R.F. (Ed.) (1991). Electroshock:The case against.Toronto: IPI Publishing.

O’Leary, D. & Lee,A.S. (1996). Seven year prognosis in depression. British Journal of Psychiatry, 169, 423–429.

Pippard, J. (1992).Audit of electroconvulsive treatment in two national health service regions. British Journal of Psychiatry, 160, 621–637.

Pippard, J. & Ellam, L. (1981). Electroconvulsive treatment in Great Britain. British Journal of Psychiatry, 139, 563–568.

Rogers,A., Pilgrim, D. & Lacey, R. (1993). Experiencing psychiatry: Users’ views of services. London: Macmillan/MIND.

Rowley, R. (1998, Spring). Electroconvulsive treatment in Sylvia Plath’s life and work. Thumbscrew, 10, pp.1–9.

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Skrabanek, P. (1986). Convulsive therapy – A critical appraisal of its origins and value. Irish Medical Journal, 79(6), 157–165.

Tharyan, P. & Adams, C.E. (2002). Electroconvulsive therapy for schizophrenia (Cochrane Review). Cochrane Library issue 4. Retrieved 22 November 2002 from www.cochrane.org/cochrane/ revabstr/ab000076.htm

Tsuang, M.T., Dempsey, G.M. & Fleming, J.A. (1979). Can ECT prevent premature death and suicide in ‘schizoaffective’ patients? Journal of Affective Disorders, 1(3), 167–171.

United Kingdom Advocacy Network (1996, Spring/Summer). ECT survey. The Advocate, 1,p.24–28. References

CIA, brainwashing and electroshock therapy

‘Monster’ Scot paid by CIA to brainwash patients

EAMONN O’NEILL October 19 2004

UK Herald

A MAVERICK Scottish doctor conducted inhuman experiments funded by the CIA using LSD and electro-shock therapy to brainwash unsuspecting patients, a documentary will reveal tonight.
Dr Ewen Cameron, from Bridge of Allan, Stirlingshire, believed he could wipe the mind clean of “bad” thoughts with a combination of electricity and a cocktail of powerful drugs.

His experiments in Canada in the 1950s were funded by the CIA, which wanted to see if his methods could be used to help agents withstand hypnotism and other brainwashing techniques.
By 1951, his research ex-panded to help find out how brainwashing a captured enemy spy might help “turn” him to become a double agent.

The first experiments were conducted on animals. Sometimes drugs such as LSD – then seen as a wonder drug – were used. Eventually, humans were targeted and more often than not the victims were unwitting participants in medical trials which lasted 25 years and cost American taxpayers £14m.

Dr Cameron died in 1967 during a climbing expedition, but his work left many hundreds of his “guinea pigs” with their memories almost completely wiped. The CIA programme did not come to light until 1977.

Now, five decades after treatment, many of his patients are still looking for compensation.
Gail Kastner, 70, a Canadian, was 19 when she was taken to the Allan Memorial Institute, a psychiatric unit near Montreal. After being subjected to shock treatment by Dr Cameron, she regressed to her childhood and began behaving like a baby.

Speaking on BBC Scotland’s Frontline programme tonight, Ms Kastner is scathing of Dr Cameron: “He used and abused his power horribly, and I hope he met a very bad ending and suffered, as he made other victims suffer knowingly.”

Still with no memory of her life before the age of 19 and badly affected by her ordeal, she said: “I have nightly nightmares where I wake up screaming.”

It was later shown that Ms Kastner had received electroconvulsive therapy from Dr Cameron at levels which had been previously administered only in laboratory experiments on dogs, which later had to be put down.

Dr Cameron qualified at Glasgow University in 1924, and was seen as one of the world’s leading psychiatrists when he began his controversial work and went on to become first president of the World Psychiatric Association.

In his drive to find a cure for mental illness, he used techniques developed by Nazi scientists in the second world war.

While some studies were legitimate, many were secret tests of interest only to the CIA, whose funding of Dr Cameron and use of the results of his experiments did not emerge for decades.

What the intelligence agency paid for were tests carried out on patients unaware that they were part of a CIA study, or that the results were being evaluated for secret military defence purposes.

Dr Cameron never acknowledged that he had broken the golden rule of medical experiments on humans – informed consent.

During the Nuremberg trials, this was the very point which convicted Josef Mengele, the Nazi doctor dubbed the Angel of Death, and others who subjected innocents to appalling medical procedures.
Many victims tracked down by Frontline refused to participate in the documentary because they were too ill. The family of one victim said “he has become like a hermit. He has trouble remembering anything”.

He was one of 77 victims who, in the mid-1990s, were paid just £55,000 in compensation by the CIA and the Canadian government – who, it was shown, were also complicit in the medical trials.

Ms Kastner, who only had her compensation claim settled this year, said of the mild-mannered doctor who destroyed her life – and that of countless others – in the name of science and military advancement: “He was a monster.”

Organized Electroconvulsive Therapy Patients Challenge Flawed Research on `Quality of Life’.

PR Newswire; 11/5/2004

NEW YORK, and WINSTON-SALEM, N.C., Nov. 5 /PRNewswire/ — The Committee for Truth in Psychiatry (CTIP) – a national organization of recipients of electroconvulsive therapy (ECT) – has challenged a new study from Wake Forest University, calling it scientifically worthless. The study claims that treatment with ECT improves patients’ quality of life and functioning.

“The author, W. Vaughn McCall, did not disclose that he is president of the ECT industry trade organization, the Association for Convulsive Therapy, which could bias his research towards minimizing the risks of ECT,” says CTIP director Linda Andre. McCall undertook his study after the British government recommended that ECT be used with caution because there is not enough good research on its effects on memory and quality of life. In a systematic review of existing research published in the British Medical Journal in 2003, England’s equivalent of the National Institute of Mental Health found that at least one out of three ECT patients suffers significant permanent memory loss.

CTIP says that financial and career conflicts of ECT researchers like McCall are behind the lack of quality research. “The real story, which you can’t get unless you read the study, is how they got those results; they asked about whether patients could function at the lowest levels imaginable,” says Andre. “It is not quality of life in any meaningful way.” Patients earn the highest possible scores on the questionnaires as long as they can get out of bed, feed and dress themselves, and use a toilet unaided instead of having bowel and bladder accidents.

But these are not the abilities affected by ECT. Rather, a significant number of ECT patients report permanent loss of memories of up to 20 years of their lives. They also report loss of skills and knowledge acquired prior to ECT, and permanent deficits in memory ability and cognitive function. Though the ECT industry has long claimed these deficits are imaginary, the British researchers disagreed.

“The McCall study compares apples to oranges,” says Andre. “I myself forgot my entire college education, and lost my ability to do graduate work and my career to ECT. But I can feed myself and even my cat, wipe my own behind, and get on a bus. By the standards of this study, my quality of life couldn’t be better.”

Last Resort Therapy

Last Resort Therapy


The Record (Bergen County, NJ)

10-25-2005
Jennifer Hughes

CORRECTION: An article about electroshock treatments that appeared in the Oct. 25 Health section incorrectly reported the name of the founder of the Committee for Truth in Psychiatry. The group was founded by Marilyn Rice. (PUBLISHED THURSDAY, NOVEMBER 10, 2005, PAGE A02.)

When most people think of electroshock therapy, they picture Jack Nicholson writhing in agony on a gurney in “One Flew Over the Cuckoo’s Nest,” but “Jane” has never seen the film.

The 52-year-old doctor from Morris County, reluctantly agreed to ECT (the procedure is now called electroconvulsive therapy) in February after her 30-year battle with manic depression had reached its terrible crescendo.

Medications no longer worked and the cocktail of drugs brought nighttime insomnia and daytime drowsiness. Tremors shook her hands, she gained 50 pounds, and her sex life evaporated.

“I don’t like to think about it, but I was really suicidal,” said Jane, whose mother is institutionalized with severe depression. Since then, she has had 16 treatments at University Hospital in Newark and said her lifelong depression has lifted.

“It basically saved my life,” she said.

ECT, which causes a grand mal seizure, has changed since its early days, when even proponents agree it was used on too many patients, in painful procedures. Now, patients who receive ECT are given anesthesia and muscle relaxants, which prevent broken bones and muscle injuries. The amount of electricity in most ECT treatments is about 800 milliamps, about one-fifth the power you would feel if you were shocked through your wall socket, doctors said.

Many psychiatrists admit memory loss is a serious potential side effect of ECT, but the treatment is often the last resort, when medications don’t work, for people who are severely depressed.

“ECT is the gold standard by which all anti-depression treatments are judged,” said Dr. Charles Kellner, who treated Jane. “It works better and faster than any other treatment.”

At Englewood Hospital and Medical Center, Dr. Charles Blackinton said those referred for ECT often can’t take drugs because of medical conditions or can’t tolerate the side effects.

“People are no longer willing to put up with partially remitted depression,” said Blackinton, who has been doing ECT at the hospital since 1964.

But while ads for anti-depressants are commonplace on TV, ECT has not escaped its association with psychiatry’s dark ages. Jane asked to remain anonymous because of the stigma.

ECT also has not shed its vocal critics, who insist success rates are overblown, that memory loss from ECT is more widespread than reported and that it is often irreversible.

“Neurologists are trying to prevent seizures because of the bad things that they do to the brain, while psychiatrists go out of their way to produce seizures,” said Dr. Peter Sterling, professor of neuroscience at the University of Pennsylvania School of Medicine. “It doesn’t make any sense to me.”

Despite the fact that ECT has been used in the United States for more than 50 years, no one knows exactly how it works or how many patients receive it each year.

The American Psychiatric Association estimates 100,000 patients get ECT annually – but doctors admit the figure is merely a guess because no government agency or outside group monitors or tracks ECT nationwide.

Englewood Hospital has seen a rise in ECT patients; from 142 in 2003 to 168 for the first eight months of 2005. At the University Hospital, which has had an ECT program for 2 1/2 years, about 26 patients have undergone ECT each year, including some who came from as far away as California.

While several states have laws that require reporting information on ECT patients, New Jersey does not.

Linda Andre, a freelance writer in New York City, founded the Committee for Truth in Psychiatry in 1984 to cope with her negative reaction to ECT.

She said she was coerced into ECT by family members. She said she has no memory of ever being depressed and that the treatment wiped out five years of memories.

“Your life is erased like it never happened. … It can be very difficult to live your life after that,” she said. Andre said her group has about 500 members nationwide, and all of them have experienced severe side effects from ECT.

She said she often hears former patients say doctors don’t adequately explain side effects and push people into the treatment.

One of the biggest hurdles Jane had to overcome before she agreed to ECT was the fact that her doctor couldn’t explain how it worked.

“I’m a scientist,” she said. “That was very hard for me to accept.”

It is not the electricity but rather the seizure caused by ECT’s current that is believed to be the key, said Kellner. One theory is that when the body releases neurotransmitters to “turn off” the seizure, those are the same brain chemicals that naturally help alleviate depression.

Backing up that theory is the fact that many of the most recent and most effective anti-depression drugs were first developed as anti-convulsants, Kellner said.

Dozens of studies have been done on ECT’s effectiveness with a wide range of success rates.

* In a 2005 study, 85 percent of patients reported a remission in their depression during ECT treatments and within a week of the course’s conclusion.

* Another study, from 2004, reported between 30 and 46 percent of patients interviewed within days of ECT reported that their depression had lifted.

* A 2001 study found that without follow-up medication, depression returned in 85 percent of patients within six months. Only 39 percent reported a relapse if they had medications.

ECT is a short-term solution, said researcher Dr. Vaughn McCall, editor of the Journal of ECT and the president of the Association for Convulsive Therapy, which has about 400 members worldwide.

“The first thing you have to do with a patient is disabuse them of the idea that this is a cure,” McCall said.

Just because ECT helps only in the short term does not mean it should be discounted, argued Kellner.

“If someone kills themselves because they couldn’t get well in the short term, then it doesn’t matter what would have worked in the long term,” he said.

ECT can pull a patient from the depths of a life-threatening depression quickly and long enough to allow time for medications to work, to find a proper cocktail, or to allow for a natural lifting of depression, McCall said. In some cases, patients rely on a “maintenance” ECT – having the treatments spread out for years.

“There’s no good answer for why drugs sometimes work after ECT when they didn’t work before,” said Englewood’s Blackinton.

Dr. Peter Breggin, author of the book “Toxic Psychiatry,” is likely the most well-known critic of ECT. He said the reason some patients show an improvement after ECT is precisely because of the damage caused to the brain.

“Patients are too numb, bewildered and confused to be anything, let alone depressed,” he said.

The other major hot button issue of ECT is memory loss. Supporters of ECT say memory loss is usually not permanent or extensive and generally involves impersonal memories like names of places.

“There are some reports of people with much more profound memory loss … we don’t understand why this happens, but it is quite rare,” said Kellner.

Critics say studies are tailored to weed out severe cases, and there is not enough follow-up on patients to give a real understanding of effects.

“All the studies are done by shock docs,” said Breggin. “I’d discount anything they have to say.”

In one study from 1986, patients wrote down an inventory of personal information and memories before ECT treatment and were asked the same questions again post-ECT.

Those with bilateral ECT – when electrodes are placed on both sides of the head – had forgotten about 30 to 40 percent of the information. Patients in a control group who did not have ECT forgot about 15 to 20 percent of the information.

Because of the problems with memory loss, researchers are looking for ways to induce seizures, or create similar brain chemistry, without electricity.

One way is through magnetic stimulation, which produces seizures in a more localized, specific part of the brain, said Dr. Sarah Lisanby, a researcher and practicing physician at Columbia University. Another technique is called Vargus Nerve Stimulation, which uses a small device implanted in the body that stimulates a nerve running through the neck to the brain.

One of Sterling’s arguments against ECT comes from how researchers are trying to promote these new treatments.

“In order to promote them, they’re pointing out the damage caused by ECT, the fact that it is safer than ECT, even though they had denied for years that ECT caused damage,” he said.

Lisanby noted that while ECT can have serious side effects, so do psychiatric medications.

“I’d like to see us as a field do a better job of communicating more accurate information about the benefits and risks of ECT as compared to other treatments,” she said. “I think that could help combat some of the stigma and lack of information on what ECT is.”

(SIDEBAR, page F01)

What the procedure entails

Most patients who have ECT have a course of therapy that includes six to 12 treatments, starting with three times a week.

* A patient who is referred for ECT undergoes a physical exam to ensure there is no neurological problem that could be causing depressive symptoms. Blood tests and spinal X-rays are taken to ensure the patient can tolerate the anesthesia and seizure caused by ECT.

* Doctors explain to the patient and family members side effects, including memory loss and cognitive difficulties. They are advised to have someone help at home after treatments, to refrain from driving, and to avoid major decisions.

* At the hospital, monitors are placed on the patient to track blood pressure, heart rate, oxygen content and brain waves. Gauze is inserted into the person’s mouth to prevent tooth damage. A general anesthetic is administered, and the ECT electrodes are placed on the scalp. In bilateral ECT, one is placed on each temple; in unilateral ECT, the electrode is placed on the top of the head near the right side.

* The electrical pulse lasts from half a second to eight seconds, and the patient undergoes a grand mal seizure, which can last from 25 seconds to 90 seconds. In many cases, because of the muscle relaxant given, the patient’s body barely moves.

* Once the patients awaken, usually after less than 10 minutes, they remain in a recovery area until they can be driven home or return to a psychiatric unit of a hospital.

Source: Dr. Charles Blackinton, Englewood Hospital

ECT Often Associated With Retrograde Memory Loss

ECT Often Associated With Retrograde Memory Loss

Reuters Health Information 2003. © 2003 Reuters Ltd.

NEW YORK (Reuters Health) Jun 20 – About one third of patients report
persistent memory loss after undergoing electroconvulsive therapy (ECT), results of a
meta-analysis suggest, but clinical studies may fail to document this
phenomenon because they do not address retrograde amnesia.

The Royal College of Psychiatrists states that more than 80% of depressed
patients treated with ECT respond well and that this treatment does not cause
persistent memory loss. In the British Medical Journal for June 21, Dr. Diana
Rose and colleagues at the Institute of Psychiatry in London point out that many
patients disagree with the College’s statement.

After searching relevant databases, Dr. Rose and her associates identified 35
reports documenting patients’ views on treatment with ECT. Nine reports were
either undertaken by patients or with the collaboration of patients. Sixteen
evaluated the perceived benefit and seven investigated memory loss at least 6
months after treatment.

Perceived benefit varied widely between studies (p < 0.001), the
investigators found. Studies carried out by clinicians alone tended to report the highest
levels of positive responses; Dr. Rose’s group suggests clinicians’ studies
took place soon after treatment and used fewer questions than did those by
patients.

Persistent memory less was reported by 29% to 55% of subjects. The authors
maintain that the studies on which the Royal College of Psychiatrists based its
findings used routine neuropsychological tests that measure anterograde
memory. “Thus, the risks reported by patients do not appear in clinical
assessments,” they write. They therefore suggest that the College’s statement “that memory
loss is not clinically important is unfounded.”

In an editorial, Drs. Stuart Carney and John Geddes agree that there is a
dearth of “genuinely collaborative high quality research” in this area.

The National Institute for Clinical Excellence (NICE) has conducted an
appraisal of ECT based on a review of the use of this therapy for schizophrenia, the
University of Oxford editorialists point out.

They predict that in the UK, potential overuse of ECT will be avoided because
of the “restrictions, increased safeguards, and improved consent procedures”
recommended by NICE without compromising access to ECT for the most severely
ill patients.

BMJ 2003;326:1343-1344,1363-1365.

MEDICARE STOPS FUNDING MULTIPLE ELECTROSHOCK

LOS ANGELES: As of April 1, 2003, Medicare will cease all national coverage of “multiple seizure” electroshock treatments, after an investigation revealed the practice is unworkable and places patients at risk. The Center for Medicare and Medicaid Services (CMS) conducted the investigation after a December 2001 report by the Office of the Inspector General (OIG) found multiple seizure electroshock had “none of the claimed benefits and many risks,” including “profound confusional states.”

Also known as multiple monitored ECT (MMECT), Medicare has been paying out $500,000 a year for its use. On February 24 this year, CMS said that Medicare would no longer cover this practice, stating, “The clinical effectiveness of multiple-seizure electroconvulsive therapy [ECT] has not been verified by scientifically controlled studies…studies have demonstrated an increased risk of adverse effect….”

CMS also found that in the elderly population, the risk may be “several fold higher” than for “younger patients for severe confusion, falls, and cardiorespiratory complications.” The elderly are a key market for ECT. In Texas, one of the few states that keeps track of shock statistics, 65-year-olds get 360 percent more ECT than 64-year-olds because Medicare coverage takes effect at sixty-five.

In the 1960s, psychiatrists added muscle relaxants to modify the assault on the body. Today, the administration of ECT is a $3-5 billion a year industry in the United States with more than 100,000 Americans undergoing it, many involuntarily. Yet, a 2001 Colombia University study found ECT is so ineffective at ridding patients of their depression that nearly all of those who receive it relapse within six months of stopping treatment.

Paper on ECT statistics at MH Stats Conference

This is an outline of a paper I gave at the 2001 Mental Health Statistics Conference (SAMHSA) in Washington, DC.

ECT Reporting – The Statistical Gap

Shortly before she left office as SAMHSA Director, Dr. Nelba Chavez spoke of the pockets of mental health research that existed. These were pockets of good, solid research, but she encouraged those in the field to push on and to try to close the enormous gaps that exist in research today.

The field of electroconvulsive therapy, or ECT, is littered with chasms where research simply does not exist. This paper will highlight those gaps, as well as propose new directions for ECT research.

The most basic question, how many people have ECT each year in the US, is not answerable. Researchers can estimate, and these estimates generally range from 100,000 to 200,000 persons per year. But precise numbers continue to evade us, and the last major study to undertake the question of how many patients in the US receive ECT annually was published in 1994. This study, “The Use of ECT in the United States” by JW Thompson et al, used estimates from the NIMH Sample Survey Program for 1975, 1980 and 1986 to conclude that ECT use dropped dramatically from more than 58,000 in 1975, to an estimated 36,558 patients in 1986.

A study in 1995 by Hermann used data from the American Psychiatric Association’s 1988-1989 Professional Activities Survey to estimate ECT use in 317 metropolitan statistical areas. Annual ECT use varied from 0.4 to 81.2 patients per 10,000 population.

While this was a engaging study, it relied entirely upon those APA members who responded to the survey, and their 4,398 patients treated with ECT. The authors concluded that the estimated national rate of ECT utilization would be 4.9 patients per 10,000 population, resulting in an estimate of 100,000 US patients treated with ECT in the year studied, 1988-89. So the first study concluded 36,500 patients were treated with ECT in 1986, and the second study estimated 100,000 patients treated two years later. It seems unlikely that the use of ECT in the United States would nearly triple in two years.

Thus, we come back to the question, just how many persons are treated with ECT each year? The answer is we don’t know.

This illustrates what many consider to be the biggest problem in contemporary ECT research – the lack of real data. There is no lack of research on ECT, with two professional journals devoted entirely to the subject. But as Dr. Chavez pointed out, the research exists in pockets. One of the biggest areas of research involves the continuing quest to prove the mechanism of action, just how ECT works. Despite millions of dollars and countless hours of research, a definite answer continues to elude scientists.

A few states have enacted legislation to help answer this question – and others. Those states include Massachusetts, Illinois, Vermont, Colorado, California and most notably, Texas. Two weeks ago, the Missouri State Senate rejected a statewide ECT reporting bill, calling it too controversial.

Indeed, the legislation passed in Texas has seen opposition along the way. The statute in Texas goes beyond mere reporting to include restrictions on the use of ECT on anyone under age 16, as well as limiting the number of treatments per patient, requiring a second opinion when used on the elderly and tighter control of involuntary ECT.

Many ECT practitioners and proponents fought the reporting law, but a report written by three prominent Texas psychiatrists last year called it  source of valuable data and recommend a continuation of the reporting requirement. And, they call for additional rating instruments, including a patient self-report rating scale for symptom severity and memory impairment, as well as a longer follow-up period. Currently, Texas only requires a four-week post ECT follow-up.

How many people die annually from ECT? The American Psychiatric Association reports a figure of 1 in 10,000. While the Texas statistics don’t show a clear number since cause of death isn’t listed, a review of autopsy reports indicates a rate of closer to 1 in 450. Of course the state of Texas is not representative of the rest of the country because of its tighter regulations. Researchers should have better data than this. Having no way of knowing accurate numbers of patients treated each year, or the number of complications – this is unacceptable from a scientific standpoint.

There are several other areas of interest that arise from an analysis of the Texas data, including the high use of bilateral ECT, approximately 82 percent. This number conflicts with the widely-touted viewpoint that unilateral is used more often today because it causes fewer side effects.

We come back to the idea of pockets of great research, with enormous gaps we need to fill.

The wealth of data gathered in Texas over the last several years should be a model for a federal reporting system of ECT. Last summer, the National Mental Health Association announced in its policy statement that it advocates the establishment of a national data bank, operated under the oversight of the Center for Mental Health Services, requiring the scrupulous recording of all ECT given, with documentation and dissemination of results.

So the first order of business must be such a database and a federal ECT reporting law.

A second area of research that must be addressed is the area of memory research. There exist a variety of studies that examine memory issues in ECT patients. However, critics insist that the measures of memory loss are superficial and ignore major components of the system of memory.

Writing in Nature last year, neuroscientist Peter Sterling says: “Memory loss could be monitored by questioning patients before ECT about early events in their lives and then re-questioning them following each series of ECT. When this was done 50 years ago, memory losses were marked and prolonged. However, no effort has been made since to routinely perform this simple test.”

That study fifty years ago was done by Irving Janis, and remains the definitive study of the effects of ECT on memory. Janis interviewed 19 patients at length, and then interviewed them four weeks after ECT, attempting to obtain the same information. He gave the same interviews to controls who did not have ECT. Janis wrote “Every one of the 19 patients in the study showed at least several life instances of amnesia and in many cases there were from ten to twenty life experiences which the patient could not recall.”

Studies undertaken in the 70s and 80s added to Janis’ findings that ECT does, in fact, produce memory loss.

But contemporary researchers continue to maintain that ECT does not produce permanent memory loss and that such reports are either the result of patient misunderstanding, or the effects of the depression and not the ECT.

This has caused a great chasm between researchers and persons who identify themselves as ECT consumers and survivors. Even those who say they were glad they had ECT complain of memory loss and say they wish they had been told of the risks upfront.

Since the beginnings of ECT use, patients have complained of cognitive impairment and those complaints have remained consistent through present time. ECT patients and survivors alike have asked researchers to focus more upon these issues, but are told “it’s all in your head” and their complaints dismissed.

Anecdotal reports of success are welcomed and even published, yet the large body of anecdotal reports that focus upon the negative side of ECT are discarded, saying that anecdotal reports are not valid.

One of the biggest problems with the memory studies as performed today is that they do not use sensitive and elaborate testing, such as those used by de Mille to differentiate matched subgroups of fifty patients who were lobotomized in the 60s. Many so-called memory tests today simply use the Mini Mental State Exam to prove that no deficits occur. Critical researchers say it’s not difficult to find, but you must test for it, and they continue to say that contemporary studies are deliberately not testing for deficits they know will appear. In the study of permanent effects of ECT, testing such as that of de Mille should be made at intervals of a day, a week, a month and a year post-ECT.

Let’s return again to the Texas data.

I’d like to hand out the actual reporting form that is used in Texas.

There have been two major journal articles that have analyzed the data, one in the Journal of Forensic Sciences November 2000; the other in Journal of Clinical Psychiatry in 1998.

(quotes)

This does illustrate the problems associated with the treating ECT physician deciding for the patient and often not hearing any complaints. As you can see from the form, the doctor simply chooses a number from one to five. One of the journal authors does go on to suggest a patient self reporting form, and this would be a strong addition to the current collection of data.

(subjective nature of severity and memory impairment)

A federal database of these kinds of data would be extraordinarily valuable in providing tools with which researchers could evaluate ECT, and examine trends.

Consumer/survivor input into research studies is needed so that the issues that are important are no longer ignored. A research panel that is made up of consumer/survivors should be established, and it should direct some of the research. It should go beyond an advisory capacity and encourage consumer/survivors to lead the way and begin to research the issues that concern them.

As the saying goes, nothing about us without us and that saying applies to research. More than sixty years of being told “it’s all in your head” must change and consumer/survivors need access to research funds, as well as the accommodations necessary to give them the tools they need to perform valid, scientific research…concerning the issues that affect them.

Some very strong efforts are being made to include consumer/survivor voices in policy decisions, but an equal effort must be made in the research arena.

Another of the criticisms directed at ECT researchers is that the bulk of the research is conducted by the same group of people. They sit on the editorial boards of the journals and some have financial interests in the manufacturing companies. Allowing consumer/survivors a voice in these research projects, as well as the opportunity to provide some outside direction could help in overcoming some of the criticisms.

However, barring full inclusion into the research process, ECT consumer/survivors should be given the resources to do their own research, on those issues they feel have been continually ignored.

Animal studies are a third area of concern in the realm of ECT research.

The majority of studies on the effects of ECT on animals were done in the 40s and 50s. Numerous authors have called upon these studies as evidence that ECT does cause brain damage. Contemporary researchers dismiss the studies, saying they were done 50-60 years ago and are no longer valid due to problems in methodology and due to claims that the process of ECT is substantially different today. Yet researchers are not attempting to do similar studies using more modern machines and better scientific methods.

A review of Medline citations that involved the study of ECT and animals returned thousands of citations, leading at first glance to the belief that animal studies are being conducted. However, closer examination reveals that the criticisms are valid. The animal studies involve almost exclusively the continuing quest to discover how ECT works.

Surely some of this research money could be used to repeat the studies of earlier decades. Until a major animal study similar to that of Hans Hartelius in 1952 and many others like his, the disagreement will remain and the question never fully answered: Does ECT cause brain damage. Both sides of the controversy remain steadfast in their views, but good, solid animal studies are needed before the truth will ever be known. And to deflect the criticism that will definitely result from both sides, depending on the outcome, I would like to see several large, multi-disciplinary studies involving large animals, bringing in experts from outside the field of ECT.

ECT isn’t the only area where there exist research deficits of course. But it is very illustrative of an area of research that is closed to outsiders and where any criticism is continually deflected, despite six decades of consistent complaints.

And that brings us to the topic of anecdotal reports, a very problematic area for researchers.

When the FDA classified ECT devices in 1979 as the most dangerous and demonstrating an unreasonable risk of illness or injury, the American Psychiatric Association heavily lobbied the FDA to reclassify the machines as safe. The original classification would have required the industry to perform animal testing and prove its safety. However, ECT survivors organized and also lobbied the FDA. This resulted in over 1000 anecdotal reports to the FDA.

Because complaints are not taken seriously by ECT researchers, and never have been, anecdotal reports such as these are disregarded, saying they are not scientific evidence. However, it’s a Catch-22.

Patient complains and the treating physician dismisses the complaints saying the patient is either mistaken or so mentally ill, she doesn’t know what’s going on. In that way, the ECT industry has managed to disregard decades of complaints.

Kalinowsky and Hock wrote in their 1952 textbook that “All patients who remain unimproved after ECT are inclined to complain bitterly about their memory difficulties.”

The trend today has been to accept a few token stories about memory loss, provided the person says ECT saved my life. If the entire report is negative, i.e. it didn’t help and left me with damage, it goes back to the person being too mentally ill to understand what’s going on, or worse, simply a liar and troublemaker.

Additionally, anecdotal reports are acceptable when written as case reports, or  when promoting the value of ECT. All of a sudden they count. Yet when ECT survivors try to draw upon their own experiences, you hear “Those are anecdotal and don/t mean anything.”

I’ve lost count of the anecdotal reports that I receive in email via the website I run. Obviously those can’t be said to be representative of the overall population of ECT users, but I do believe there is value in anecdotal reporting, especially when it seems that complaints will be continually ignored. Although I’ve never actually tabulated the emails I’ve gotten over the last few years or tried to count who had what, the majority of them talk openly about the devastating memory loss, the lack of resources for recovery, and dismissal by their doctors – even when they say ECT saved my life.

When I did a small study called Voices a few years ago, I was stunned to find that many patients become frustrated after ECT and their doctor’s rejection of their complaints…so frustrated that 75 percent of those – even those who reported good outcomes with ECT’s relief on depression – have moved on to a new doctor. Some of course left psychiatry altogether, but the majority became so angered that they found new doctors.

So we come back to the issue that there are all of these self reports and very few are listening. The FDA has its collection of reports that resulted when they considered reclassifying the devices. But I’m not sure that the role of the FDA as a regulatory agency is the most appropriate place to collect oral histories and anecdotes.

What I would like to see is a central database where people can share their stories, good and bad. It’s important that all voices be heard and that no one’s story be rejected or ridiculed. It’s an idea I’m considering on my own, simply because it needs to be done….kind of an ethnography of electroconvulsive therapy patients.

Finally, a lack of research in the area of recovery troubles me the most and it should be a priority. The needs of ECT patients are unique – not only do they have to continue the quest to keep depression away, they have needs that are not recognized by most.

The most common complaints after ECT are:

Inability to remember learned materials, and difficulty in relearning, or in learning new skills
Inability to concentrate on the job
Amnesia

There are many anecdotal reports of persons who had thriving careers, but post ECT have forgotten their skills.

There must be recognition from the medical and support communities of these problems, as well as research into recovery methods.

As it is, ECT patients use a system of trial and error, finding techniques that work. Sometimes they connect with others and share ideas.

I compare the recovery process to that of someone who has lost a limb. Once the deficits are recognized and accepted, the person must find ways of coping and find ways of favoring areas of their thinking processes that have not been affected. When a person loses a limb, it takes time to adapt and to find ways of managing without that limb. Eventually, the person learns to work around limitations and to find methods to assist in getting back to everyday life.

There are areas in ECT research where problems are still not recognized, despite 60 years of consistent reports and complaints. We must begin to recognize and accept that these problems do exist before we can take the necessary steps to correct the deficits in research.

As a beginning step towards data collection and better understanding of this complex issue, we need a reporting bill similar to that in the state of Texas, and we need it on a federal level. This is something that both sides of the controversy can sign onto and the very idea of a reporting bill should not be controversial. It should be matter of fact and acceptable to all.

Second, we need to address the gaps in research studies in the area of animal research and the effect of ECT on the brain. These studies should be done by a team of researchers that include scientists from outside the field of ECT, using experts from the field of neuroscience.

Third, we need to do a better job of studying memory deficits, and not limit the research to superficial testing. The testing should be rigorous and should also include researchers from outside the field of ECT who fully understand the complexities of memory.

Fourth, we must find a way to compile anecdotal reports to give credibility to the unheard voices of ECT. Instead of ridicule, ECT consumer/survivors demand respect for their experiences, and they deserve to be heard. This information must be made easily available to those considering ECT so that they’ll have a variety of viewpoints upon which to draw and make a more informed choice.

Fifth, we need to find ways to encourage independent consumer/survivor research, to bring together mentors from the research community and to drive research in areas that reflect consumer/survivor values.

Finally, we need to commit resources to the study of recovery for ECT patients. We must recognize the unique needs and find ways to provide rehabilitation and tools for recovery.

New UK report from Mind examines patient experiences

New UK report from Mind examines patient experiences

More than half of those in a recently completed survey of 418 ECT recipients said they did not realize they could refuse to give consent to the treatment.

The survey was conducted earlier this year in the UK by the mental health charity Mind, and concludes with several recommendations. Among those, Mind recommends that ECT should not be used against a person’s will.

“However, given that it seems impossible to predict who will be adversely affected, and given the seriousness and permanent nature of the potential side-effects recorded above, we believe that it should no longer be able to be imposed without consent,” say the authors of the report.

Mind reports that during a three month period studied by the Department of Health (January through March 1999), 2,800 patients received 16,000 administrations of ECT. 700 (25%) of these patients were detained under the mental health act and only 29 percent of those consented to the treatment.

Other key findings from the Mind report:

* One-third (33%) of respondents had had ECT in the last 5 years.
* Depression was by far the most common diagnosis among respondents (53%).
* Over half (52.5%) of the total sample and over one-third (34%) of those given ECT most recently were not aware that they could refuse to give consent to the treatment.
* Almost three quarters (73%) of the total sample and almost two-thirds (60.5%) of those given ECT most recently were not, as far as they remember, given any information about possible side effects.
* Of those consenting to treatment in the last two years, 48% received, as far as they remember, no information about how the treatment would work and 44.5% no information about possible side effects.
* Only 8% of respondents (15% of those receiving ECT most recently) had the opportunity to consult an independent advocate before making a decision about ECT.
* 84% of respondents said that they had experienced unwanted side effects as a result of having ECT.
* 40.5% reported permanent loss of past memories and 36% permanent difficulty in concentrating.
* Among those receiving ECT within the last two years, 30% reported that it had resulted in permanent fear and anxiety.
* A third (32.5%) of recent recipients felt hopeful before having ECT but 29% felt terrified and 22% felt that they were being punished.
* In the short term, 36% of more recent recipients found the treatment helpful or very helpful and 27% unhelpful, damaging or severely damaging. However, in the long term, 43% of more recent recipients felt that it was unhelpful, damaging or severely damaging.
* 66.5% of the overall sample and 49% of those having ECT in the last 2 years would not agree to have it again.
* Respondents from black and minority ethnic communities were more likely to be detained under the Mental Health Act and to have received ECT without consent. They reported a more negative view of ECT than the overall sample with 50% finding it unhelpful, damaging or severely damaging in the short-term and 72% in the long-term.

Full report (MS Word format): UK-Mind-report-survey

ECT: II: Patients who Complain

ECT: II: Patients who Complain

Br J Psychiatry 1980 Jul;137:17-25
By C.P.L. Freeman, D. Weeks and R.E. Kendell

Summary: Twenty-six subjects who complained of permanent unwanted effects following ECT were compared with two groups of control subjects on a battery of 19 cognitive tests. Many statistically significant differences were found in cognitive functioning, mostly attributable to the level of depression or medication in the complainers. However, after analysis of variance/covariance some differences still remained, indicating impaired cognitive functioning in the ECT complaining group.

The aim of the study was to identify a group of people who had specific complaints about electroconvulsive therapy (ECT), to catalogue their complaints and to assess their cognitive function. Results on a battery of cognitive tests were compared with results from a group of matched normal volunteers.

Methods

With the cooperation of the local evening newspaper (circulation 140,000 approx.), an article was written entitled “Is there any harm in shock treatment?” At the end of the article readers who thought that ECT had had an adverse effect on them were asked to contact one of the authors:

So if YOU have had ECT, no matter how recently or how long ago, and reckon it has had an adverse effect on you, the group would be grateful if you would help by allowing them to test your memory and ability to think quickly, and see how you compare with other people. It would only take about an hour or so one afternoon…and there are no shocks in store. That’s a promise!

We also asked consultants in the hospital to let us know of any patient who had complained about ECT.

Each complainer was given an unstructured interview by either C.P.F. or R.E.K. A note was made of their complaints, time and number of treatments, and whether they would willingly have ECT again. An attempt was made to assess their mental state at interview to see if they were clinically depressed or otherwise ill and a note was made of their drug treatment, if any. This rough assessment was supplemented by completion of the Wakefield depression self-rating scale (Snaith et al, 1971) and the Middlesex Hospital questionnaire (Crown and Crisp, 1966). (All references are at the end of Paper III).

Subjects were tested for cognitive function by D.W. who did not know the nature of their complaints. A battery of 19 tests was used, as described with literature references at the end of Paper III. They covered visual design, verbal and spatial positional learning, verbal and visual memory, and there were two tests of remote memory, tests of the ability to link faces with names, and tests of perceptual aptitude and concentration.

The subjects also filled in the Broadbent cognitive failures questionnaire which gives a self-rating of the subject’s memory and concentration difficulties.

Controls – A group of volunteers who had not had ECT, and most of whom had not been psychiatric patients, were tested in exactly the same way. These were group-matched with the ECT complainers for age, sex, social class, educational level and intelligence. These volunteers were also obtained via an article in the same evening newspaper which asked for people who would be prepared to help out with research projects at the Royal Edinburgh Hospital.

The samples – Twenty-eight people replied to the newspaper article, 10 men and 18 women. One woman had Alzheimer’s disease and was attending the hospital as a day patient. She had insisted on coming when her husband brought the article to her attention. She was interviewed but was not testable.

Of the remaining 27, 14 had specific complaints about ECT (newspaper complainers) and 13 had misunderstood the article (newspaper non-complainers) and attended because they thought we wanted to have any views on ECT. They had either good or neutral things to say about the treatment. On closer questioning most had one or two very minor complaints about the treatment.

Twelve patients were identified via psychiatrists in the area, (hospital complainers), as they had told their doctors that ECT had produced enduring unwanted effects.

Results

The majority of complainers were women: 22 to 5 men (see Table I). There were only minor differences between the groups, except that the hospital complainers had last had ECT much more recently than either of the newspaper groups.

Case summaries are given in the Appendix. The commonest complaint by far was about some type of memory impairment. There were two main types of memory complaint: everyday forgetfulness such as forgetting faces or names, forgetting phone numbers or messages, forgetting things when going shopping; and secondly, holes or gaps in past memories.

Most subjects accepted that there might be poor memory for the time of their illness and course of ECT. Their complaints were of lost periods, usually some months before ECT but occasionally afterwards. One subject complained he could not remember an annual summer holiday, another a wedding which occurred six months after ECT. The amount of distress this memory impairment caused varied considerably, but most found it irritating rather than incapacitating.

Other complaints were of epilepsy (patient 7), severe episodic pain (patients 7 and 21), personality change (patients 9 and 16), difficulty in knitting and fine hand function (patient 12), poor concentration (patients 22, 24 and 26). Many subjects had more than one complaint.

In all these cases the subjects definitely related the onset of the complaint to a course of ECT.

Only one complainant was against ECT in principle (No. 4). She felt it was a senseless and illogical thing to pass an electric current across people’s brains when they were depressed.

Of the total of 26 complainers 4 said they would have ECT again. 13 said they would never have it again under any circumstances and 9 said they were doubtful and it would depend on the circumstances, such as how depressed they were or whether antidepressants had failed. All the non-complainers said they would have ECT again.

Thus we did not attract any cranks or politically motivated complainers by our inquiries or, if we did, we didn’t detect them. All but one of the subjects put their complaints in a reasonable balanced way, they seemed generally concerned by their difficulties and often relieved when told the results of their test scores. We did not get the impression that people were exaggerating their complaints or ‘faking bad’ on the cognitive test results.

Comparisons

The subjects as a whole rated themselves as more depressed than the matched volunteer controls on the Wakefield scale. They also scored more highly than the volunteers on the Middlesex Hospital questionnaire (MHQ) on both total score and all subscales except hysterical personality. They rated themselves as having more cognitive failures on the Broadbent questionnaire. (See Table II). ECT complainers (n=26) scored as more distressed on the same tests than ECT non-complainers (n=13). (See Table III).

As drug taking varied greatly from subject to subject both in amount and type of drug, each subject was crudely rated on a score of 0-4 on the amount of psychotropic drugs taken. (Example: nitrazepam 5 mg taken the night before would score 1; diazepam 5 mg t.d.s. would score 2; amitriptyline 150 mg daily would score 3; diazepam 30 mg daily, barbiturates in doses of 200 mg daily, major tranquilizers if more than 100 mg daily of chlorpromazine or its equivalent would all score 4. Using this measure the complainers were taking more drugs than the non-complainers.

Thus on all measures of symptoms and medication the complainers scored more than the non-complainers and the subjects as a whole scored more than the normal volunteer controls. The non-complainers’ scores were closer to the normal volunteers than to the complainers.

Comparisons on cognitive tests

When all ECT subjects were compared with the normal controls they were significantly impaired on eight tests, (See Table IV) and not impaired on eleven. They were slower than controls and their retention was poor; they couldn’t remember a spoken paragraph of text as well; they couldn’t put names to faces as well. They scored poorly on memories of their own past and on remembering personalities since the 1950s. In general, the test results appeared to match the subjects’ complaints.

Despite rating themselves as being more depressed, more anxious etc., and being on drugs, they did as well as the matched volunteers on the majority of tests. Their new learning (visual spatial and verbal) was not impaired and the remembered personalities from the 1930s, 1950s as well as controls.

Removing the 13 non-complainers from the ECT group and then comparing the complainers with normal controls alters the picture very little. The difference on personal remote memory becomes non-significant because the N is smaller and the means remain the same. Complainers were significantly better than non-complainers on one test and worse on two. (Table V)

Summary of group comparisons

The picture emerges of a group of patients who have had ECT, who rate themselves as more depressed, having more symptoms in general and currently receiving more medication and who perform significantly worse on number of cognitive tests than a group of volunteer controls. They also tend to be more impaired than a small group of non-complaining subjects who have also had ECT (See also Table VI).

A crucial question therefore arises: How much of the poor performance of the complainers is due to their level of depression and medication?

Analysis of variance

To try to answer this question the test results on all tests by all subjects and controls were put into an analysis of variance/covariance matrix with level of medication, level of depression, total symptom score on MHQ, age and social class as covariants. The object was to determine how much of the variance in test cores could be accounted for by these five variables, and whether having allowed for this the test results which had discriminated between subjects and controls still did so. We examine the previously significant differences test by test.

(a) Decision time and Movement time:
These are measures of speed. Level of medication had a very large effect on results and level of depression a significant effect. There were smaller contributions from age and MHQ scores. When these factors were allowed for there was no significant difference between complainers and controls on either test.

(b) Famous personalities of 60s and 70s:
All five covariates had an effect and when they were allowed for the significant difference between controls and complainers disappeared.

(c) Logical memory test:
The level of significance increases, so some of the covariates must have been operating in the direction of reducing any difference. In other words, the difference between complainers and controls becomes greater when the five covariates are allowed for.

(d) Face-name test:
Social class was a significant covariate. All the other covariates had little effect and the difference between the complainers and controls remained significant, P (e) Verbal learning:
Medication had little effect on this test. The Wakefield score and total symptom score of the MHQ both had large effects and age had some effect. When all five covariates were allowed for the difference between complainers and controls remained significant, P (f) Personal remote memory:
All covariates had some effect on this test and when they were allowed for the controls just missed significance at P Individual test results

So far we have only considered group comparisons on cognitive testing. Although there were a number of statistically significant differences between the means of the groups, when translated into clinical terms these differences are small.

When the scores of individual subjects are examined there are some large deficits on some tests. A few patients scored well into the organic range on some measures. Sometimes there was a probable explanation for these deficits. For instance in patient 1, and possibly in patient 5, alcohol could be implicated. Patient 20 was taking large amounts of psychotropic medication. Patient 10 was on a considerable amount of medication and was very anxious. Patients 24, 26 and 27 were clinically depressed. However in a number of patients, particularly numbers 2,14, 16 and 25, there seemed to be no ready explanation for their poor test results. They were virtually symptom-free, not taking drugs and as far as we could tell had no history of brain damage or excessive alcohol consumption.

The most convincing complainers who had no obvious explanation for their poor memory appeared to have nothing in common. They had not had excessive amounts of ECT, nor had their ECT been more recent than the other complainers, nor, as far as we knew were there any complications during their treatment. There were no comments in the case-notes about things going wrong such as prolonged hypoxia, missed fits, stuns, or excessive applications of electricity.

Discussion

The findings of this study must be interpreted with caution. We have not shown that ECT causes permanent memory impairment, though our results are compatible with this possibility. The study was designed as a descriptive one. What we have done is to describe in some detail a self-selected group of patients who complained about enduring unwanted effects of ECT. We have found that members of this function but on the majority of tests they performed as well as control subjects. On the tests where they were impaired, much of the impairment could be accounted for by other factors such as their level of depression and their level of medication. However, even when these factors and three other variables were taken into account not all the difference could be explained.

We are left with the fact that on three of a large battery of tests the ECT complainers performed significantly worse than the controls. although these results are statistically significant their practical significance is less certain. The differences on test scores were not great when the groups as a whole were compared, and it is not possible to say whether the differences are certainly due to the ECT, or to something else which had happened in the period since the end of treatment. The length of time since the last course of ECT varied from nine months to thirty years and in the group than answered the newspaper advertisement the mean time since their last ECT was ten years.

There are two possible explanations for our findings. The first is that ECT does indeed cause some lasting impairment of memory in a small proportion of the people who receive it. The second is that our ECT complainers were simply people whose memories came in the lower half of the normal range, or had some mild impairment of memory for other reasons, and mistakenly attributed these failings to the treatment they had received years before. One man, for example, had a history of heavy drinking and had fallen down the stairs and concussed himself on four occasions.

In our study on patients’ attitudes to ECT (see Paper I, p. 12), we found that 12 percent of patients agreed with the statement that “My memory now is better than ever.” Had our newspaper article been worded differently it is conceivable that we could have attracted a group of people who had had ECT but showed memory was better than average.

What is clear is that the present subjects themselves clearly linked their memory impairment with having had ECT. Some were quite emphatic that their memory had been affected.

In a number of cases the memory disability had become apparent shortly after the course of ECT and had remained constant over many years. It may be that ECT does cause some degree of permanent memory impairment in a small proportion of the patients who receive it, but we consider that our own and other comparisons of carefully matched groups of patients receiving ECT and drug treatment indicate fairly convincingly that ECT does not normally produce such enduring effects on memory, though they do not prove that it never does so. It would, however, require a very large scale, and probably multicentre, prospective study to detect impairments that only affected, say, one patient in a hundred.

“Cognitive impairment” after ECT treatment for depression

Wednesday, February 19, 2003
LONDON
By Nick Lamb

Spanish scientists have discovered that depressive patients appear to suffer cognitive dysfunction during maintenance treatment with electroconvulsive therapy (M-ECT).

A small study published in the journal Psychological Medicine found that depressed patients receiving this treatment experienced impairments in both short-term memory and frontal function.

Although previous studies have shown that acute courses of ECT can lead to adverse physical effects, this is the first report of cognitive side effects, the researchers said.

Dr L Rami-Gonzalez of the Hospital Cl�nic in Barcelona and colleagues compared the cognitive state of 11 depressive patients who had been treated with M-ECT treatment with 11 age- and gender-matched depressive subjects who had never received ECT.

Patients in the ECT group had received an average of 36 ECT sessions, with a mean intersession interval of 53 days.

Using a battery of neuropsychological tests, the team found that although both groups of depressed patients preserved attention function and long-term memory, the M-ECT group scored lower on the encoding of new information. In addition, frontal function test scores were significantly lower in patients treated with M-ECT.

“Compared with controls, M-ECT patients showed alterations in verbal fluency, mental flexibility, working memory and visuomotor speed,” the researchers said.

However, no significant correlations were found between cognitive measures and the number of ECT sessions, total time in M-ECT or the time between treatments.

The team concludes that further longitudinal studies with larger numbers of patients are required to establish the cognitive state in patients during M-ECT. Such studies, the researchers point out, will help to determine their quality of life and everyday functioning during treatment.

Reference: Rami-Gonzalez et al, Psychological Medicine 2003;33:345-350

WINNER: Harold Sackeim: Lying for fun and profit

By Linda Andre

LYING FOR FUN AND PROFIT

sackeim.jpg In 1975, when he was a graduate student in psychology at the University of Pennsylvania, young Harold Sackeim wrote his masters thesis on self deception. And his PhD dissertation was titled “Self Deception: Motivational Determinants of the Non-Awareness of Cognition.”

So Harold became a doctor by self deception. He then seemed headed for a dead-end career in academic psychology, publishing on such decidedly unsexy topics as “Classroom seating and psychopathology.” He published a book chapter called “The Adaptive Value of Lying to Oneself” and an article titled “Self Deception: A concept in search of a phenomenon.”

Clearly Harold needed a product to pitch, a big-ticket tie-in; if he didn’t find one he would end up just another obscure academic researcher. Sometime around 1980, his concept met its phenomenon: Harold hitched his wagon to a shock machine. It was a perfect match. Harold’s star has done nothing but rise ever since.

Harold had received a grand total of about $5,000 in grant money up to 1981. That year he got half a million dollars, and the millions have been rolling in steadily ever since. By 1988, Harold was proclaiming himself a “world expert” on ECT, and not many in the world were inclined to contradict him.

The fact is that if Harold Sackeim didn’t exist the American Psychiatric Association would have had to invent him, in order to get out of what it perceived as a public relations problem with electroshock. Sackeim is a born PR man.

ECT PR battle- listen

No one else has had quite the stomach for ECT promotion that Harold has; other ECT advocates, not so skilled in self deception, tend to choke on the Big Lies he tells so glibly. Harold gives the impression of actually believing his own lies, and perhaps he really does.

Whenever the media does a story on ECT, Harold is there with a sound bite on the spot. Whenever an ECT survivor sues for memory loss, Harold is likely to be the “expert witness” testifying against her. He’s got his fingers in every dike where the truth about ECT might slip through.

A writer for a men’s magazine once called Harold Sackeim a “designer-suited scientist.” But only the first half of that description is accurate. Harold does wear the finest suits —though like the special souped-up shock machines he uses, they must be made to order, since he stands under five feet tall. But a scientist Harold Sackeim is not. All of his money and influence have gone, not into an objective scientific investigation of ECT, but into preventing such an investigation.

— Since 1981, Harold has been continuously funded by NIMH to study “Affective and Cognitive Consequences of ECT.” He’s received over five million dollars for this grant alone (he has several other million dollar grants from NIMH as well). That’s five million dollars that made sure that no one but Harold would have the official say as to exactly what ECT’s cognitive effects are. And it’s virtually certain now that no one else ever will. This grant, now entering its third decade, no longer has to compete with other proposals for funding; it’s renewed for ten years at a time, most recently in 2000.

What does Harold have to show for his twenty years of “research”? Well, he wrote last year that “we lack data” on the permanent adverse effects of ECT; in particular, he claims there is no research on the number of survivors who experience severe permanent amnesia.

— Rather than doing this research —- research he surely knows would be fatal to his published claims that ECT is safe, and to his position as the golden boy of the ECT industry — Harold’s chosen to simply make up some numbers. He wrote the APA’s informed consent form, which is used in one version or another in most hospitals in America. The form states that only “1 in 200″ ECT survivors report permanent memory loss. But that fake “statistic” is not based on anything. Harold was finally forced to admit (on national television) that this is simply a made-up number, and that there is no data to support it. Ever the PRman, he calls the figure “impressionistic.”

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Without blinking an eye, he’s now (as of mid-2001) begun touting a new “impressionistic” figure: 1 in 500.

— In a public hearing before the New York State Assembly in July 2001, Harold claimed he had “never” seen a case of anterograde memory loss after ECT. (Anterograde refers to loss of memory function; retrograde refers to loss of memories, or amnesia.) He invited “anyone in the country” who had experienced such loss to “come in for an evaluation.” Dozens of ECT survivors with anterograde memory loss contacted Harold. How many have been to Harold’s facility for an evaluation? Not one. Harold backpedaled on his invitation as fast as he could the instant it became clear that survivors would, indeed, take him up on it. Those who’ve phoned, emailed or faxed Harold report that he either never responded, or simply told them—-without meeting them or doing any testing or evaluation—-that something other than ECT was to blame for their deficits. Drugs, other psychiatric treatments—whatever he could think of—must have caused the disability or brain damage, not ECT, he said. Therefore there was no need for an evaluation to see if ECT had done it. In one memorable case of a woman whose brain damage and permanent cognitive disability had already been well documented (and attributed to ECT) by her doctors, a lesser PR man than Harold might have been at somewhat of a loss as to what to say to her. The woman had never had any drugs, treatment, or mental illness after having ECT. So what caused her deficits? Harold wasn’t stumped for an answer: why, it was the short period of mental illness she’d experienced nearly two decades earlier, for which she was given ECT, that damaged her brain! “You’re saying you believe mental illness causes brain damage?” asked the astounded woman. “We know it does,” came the answer, quick as a con man’s switch of the cards. He explained that he believes “depression itself, period” always causes brain damage even when successfully treated.

— But stop the presses! It’s not exactly correct to say Harold isn’t gathering data on the incidence of retrograde and anterograde memory loss, and brain damage, due to electroshock. A member of his research team recently admitted that he does, in fact, test his research subjects’ memory and cognitive abilities before and after ECT. And although many of his tests are too easy or irrelevant to be useful, he does use at least one of the tests that ECT survivors have found relevant to our deficits. The catch: he’s never published or disclosed any of the results of these tests, or even the fact that he administers them. Wonder why not? And since he’s using federal money to do the testing, how can he hide the results?

— Much of Harold’s grant money has gone, not into actual research, but into long “review” articles in which he selectively trashes everybody else’s research. He did this is a 1993 article in which he dismissed the existing brain damage research, and in a 2000 article in which he trashed the memory loss research. In both articles he simply left out or distorted those published articles which say that ECT causes brain damage and memory loss.

— For over a decade, Harold has expressed the opinion that research into whether ECT causes brain damage is “not of scientific interest”, “uninteresting”, and “unlikely to be funded.”

A real scientist doesn’t cut off entire areas of scientific investigation by fiat.

Sackeim is in a position not just to express this opinion, but also to enforce it, and that’s exactly what he’s done. By virtue of his role as a reviewer of every proposed ECT grant that comes into NIMH and other agencies that might fund ECT research, and by virtue of his position on the editorial boards of virtually all journals which publish ECT articles, Sackeim’s arguably done more than any man in America to prevent a scientific investigation of ECT’s effects on the brain from ever being funded or published.

Ironically, his lab at the New York State Psychiatric Institute is stocked with the latest brain imaging technology, technology that’s available in only a handful of institutions in this country. Harold’s got both the tools and the money to settle the question of whether ECT causes brain damage —- but you see, that’s what a scientist would do, and he’s a PR man.

— Harold does MRIs on his ECT patients routinely, but not to assess the effects of ECT! He uses the brain scans to help him learn how to design and use the giant magnet (or transcranial magnetic stimulation) machines from which is making a profit and stands to make a killing when and if they replace ECT machines! What a waste of costly MRI scans…paid for with our tax money. They could be used for science, to assess the effects of ECT on the brain, if someone would just read them for that purpose, instead of as a way to further Harold’s career as a brain damage profiteer. (If you guessed that Harold’s on the payroll of the magnet machine manufacturers such as Magstim, you’re correct! He “consults” for them, gets grants from them, and how could he resist owning stock in them?)

— He’s also a consultant to the shock machine company Mecta, and has been since the mid 1980s. He’s worked for shock machine company Somatics as well. He’s even received grant money from Mecta. Federal law requires NIMH grantees to disclose actual or potential financial conflicts of interest, and requires that the conflicts be managed or eliminated. Sackeim has never disclosed his financial ties to the shock machine companies.

He does, however, disclose that he was on the board of Cambridge Neuroscience, a company that made a drug that was supposed to alleviate ECT’s effects on memory. (It didn’t.) Harold’s position that ECT is safe and can’t cause memory loss doesn’t interfere with his eagerness to make a buck off that memory loss.

His biggest whopper, for which he is justly infamous, is this one:

ECT improves memory. This statement appears in the APA consent form and many other consent forms, such as the one recently adopted by the state of Vermont. When Harold first came out with this line in the early 90s, ECT survivors laughed, figuring it was some kind of sick joke.

But no one else is laughing.

As it turns out, even Harold’s own published articles don’t support that claim. He cites only to himself as “proof”, since there isn’t anyone else; he usually cites, for instance, Sackeim et al, “Subjective Memory Complaints Prior to and Following Electroconvulsive Therapy”, Biological Psychiatry 39: 346-356 and Sackeim et al, “Effects of depression and ECT on anterograde memory.” Biological Psychiatry 21: 921-930, 1986. What this research actually shows is that patients are poor judges of their memory functioning in the days and weeks shortly following ECT, and although when asked by their shock doctors they reported their memories to be good or better than ever, in fact their performance on objective tests of memory functioning was worse. In order words, Sackeim’s own research is consistent with the conclusion that patients are suffering from acute organic brain syndrome due to ECT.

Harold is so addicted to lying, he does it just for fun. A few years ago, while teaching one of his “How to do ECT” classes, he recounted an anecdote involving a well-known New York City human rights activist and a man who was Harold’s patient at the time. Harold claimed that the advocate had come to his hospital, demanded to see this patient, got into the hospital and then tried to talk the patient out of having ECT. The punch line of the story – which got a resounding laugh out of the aspiring shock docs – was that this patient then decided to go ahead with ECT.

It made a great story, flattering to Harold, derogatory to what he called “the anti-ECT movement.” Except for one thing: it never happened. The advocate never went near Sackeim’s institution, never spoke to his patient, never tried to contact him in any way. The “anti psychiatry” organization Harold claimed she represented did not exist. He just made up the name on the spot, for purposes of his story.

His audience was completely duped, to the extent that a discussion ensued on the topic of “What would you do if anti-psychiatry came to your door?”

Did Sackeim tell his students he made up the whole thing? No, he was having too much fun. Was he maybe psychotic when he told the story? Arguably. Or as a doctor of self-deception, did he actually believe it to be true?

SHAME on Harold Sackeim for worming himself into positions of public trust, then abusing the hell out of that trust, and for making a killing doing it.

SHAME for playing the “mental patients are irrational and dishonest” card, rather than honestly investigating and documenting our reports of permanent memory loss and brain damage. (See his many government-funded articles in which he argues that people who report amnesia and cognitive deficits after ECT are crazy – for example, “Subjective Memory Complaints: A Review of Patient Self-Assessment of Memory After Electroconvulsive Therapy,” Journal of ECT, June 2000.) SHAME for playing this card as an “expert witness” on the stand against persons with permanent memory loss and cognitive disability.

SHAME for playing the “violent mental patients” card with the media, as in his false claim that patients have made “death threats” on him.

SHAME for telling one of his research subjects who was brave enough to confront him after losing twenty years of memory that her memory loss “couldn’t” be caused by ECT, and “must have” been caused by a stroke she had without realizing it.

SHAME for telling each one of the hundreds of survivors who’ve been his subjects or who’ve contacted him, “Your losses could not possibly be due to ECT”, and then saying with a straight face and fingers crossed behind his back (in court, to policymakers, to politicians, to the media) that he has “never” seen a case of permanent ECT memory loss.

Whether for fun or profit, the net effect of Harold Sackeim’s lies has been to end all scientific investigation of ECT’s effects on memory and the brain, and to effectively discredit survivors who report memory loss and brain damage, and to prevent future patients from being informed of ECT’s permanent effects.

No one is more shameless than Harold Sackeim, and no one more richly deserves induction into the ect.org Hall of Shame.

Were you treated with electroshock at New York State Psychiatric Institute (NYSPI)? Treated poorly? Complaints ignored? Dropped from the study and read later that you were never included in the study participants? You aren’t alone, and we can help. Your privacy is guaranteed.
Email, fax or call: 212-NO-JOLTS

Were you an employee in the electroshock research department at New York State Psychiatric Institute (NYSPI)? You witnessed things that have weighed on your conscience ever since? Whistleblowers are encouraged to contact us. Your privacy is guaranteed.

Participate in an ECT evaluation

From Linda Andre
Director, CTIP

On Friday, May 18th, the New York State Assembly held public hearings on electroshock. Among those testifying was psychologist Harold Sackeim. Sackeim, dubbed the nation’s “electroshock czar”, receives tens of millions of dollars in federal funding to research electroshock. He has an exclusive grant to investigate the adverse effects of ECT, which he has held for 20 years. (He has also “consulted” for the shock machine manufacturers continuously over these years.) He’s known as the foremost proponent of electroshock in the world.

Sackeim claimed that in his 20 years of shocking people he has never seen even one case in which ECT has had a permanent effect on memory function (anterograde memory).

He stated:

“I invite anyone in the country who believes ECT’s had a deleterious effect on their cognition to come to us for an evaluation.”

In the interests of science, let’s take him on up on this offer—made before a large audience, recorded on tape and in official transcripts! Please write, call, fax or email Harold Sackeim. Tell him you had ECT, and you are responding to his request to evaluate people who experienced adverse cognitive effects. Ask for an appointment for an evaluation. (Don’t worry about paying for it—he’s got plenty of grant money to study ECT survivors.)

It is important to make a record of your request. If you email, send a copy to Committee for Truth in Psychiatry at ctip@erols.com. You may mail a copy to CTIP at P.O. Box 1214, New York, NY 10003. If possible, it’s a good idea to send your request for an evaluation by certified mail.

Harold Sackeim, PhD
Chief, Dept. of Biological Psychiatry
New York State Psychiatric Institute
1051 Riverside Drive
New York, NY 10032-2965

Telephone: (212) 543-5855 (it can be difficult to reach him on this number sometimes) or(914) 238-8613
Fax: (212) 543-5854

email: has1@columbia.edu

Harold has repeatedly said that he would never even try to study persons who experienced permanent adverse memory effects from ECT because such persons are so “rare” he could never find enough of us for a study. Let’s show him he’s wrong.

Linda Andre
CTIP Director

ECT damage is easy to find if you look for it

Nature
Jan 20, 2000

Sir, The reviewer of Max Fink’s Electroshock: Restoring the Mind claims that electroconvulsive therapy (ECT) “has proved to be one of the safest procedures in medicine” and that there is a “myth, largely promoted by anti-psychiatrists, that ECT damages … brain functioning”.

One can be sympathetic to psychiatry (as I am) and still imagine that passing 150 V between the temples to evoke a grand mal seizure might cause brain damage, especially when you realize that this ‘cure’ for depression requires this procedure to be repeated 10-20 times over a week or so. And when you talk to a friend who has been so treated and discover that a year later she is still experiencing huge gaps in recall of major life events, you begin to worry. Finally you discover that ECT’s benefit is only temporary, so that many psychiatrists administer it chronically. Hmm.

Turn to the design of ECT protocols and you discover that many practitioners now administer ECT only unilaterally to the ‘non-dominant’ – non-verbal – hemisphere. Why? To avoid damaging the verbal hemisphere. In short, although ECT is completely safe, it is even safer when applied to the non-verbal hemisphere. Of course, equal damage is done to the non-verbal hemisphere, but it tells no tales.

ECT is used as an experimental tool by neuroscientists, as it releases massive quantities of glutamate, whose release following stroke causes significant neuronal death. Indeed, observers describe people who have had many ECT treatments as “punch drunk” – resembling boxers who have sustained chronic brain damage.

One reason psychiatrists are unaware that ECT is causing memory loss is that they do not test for it. Memory loss could be monitored by questioning patients before ECT about early events in their lives and then re-questioning them following each series of ECT. When this was done 50 years ago, memory losses were marked and prolonged. However, no effort has been made since to routinely perform this simple test.

It is a good bet that history will view ECT as one of what neuroscientist and author Elliot S. Valenstein calls the “great and desperate cures” – and its promoters as kin to the promotors of lobotomy.

Peter Sterling
Department of Neuroscience, University of Pennsylvania, Philadelphia, Pensylvania

Adverse psychological effects of ECT

Journal of Mental Health
Feb 1999
Authors: Lucy Johnstone
Volume: 8
Issue: 1
Pagination: 69-85

Abstract:

Although it is known that a proportion of people find ECT distressing to receive, these adverse psychological reactions are little understood. Twenty people who reported having found ECT upsetting were interviewed about their experiences in detail. Copyright Carfax Publishing Company Feb 1999

Full Text:

Abstract:

Although it is known that a proportion of people find ECT distressing to receive, these adverse psychological reactions are little understood. Twenty people who reported having found ECT upsetting were interviewed about their experiences in detail. A variety of themes emerged, including feelings of fear, shame and humiliation, worthlessness and helplessness, and a sense of having been abused and assaulted. This had reinforced existing problems and led to distrust of psychiatric staff. Few had felt able to tell professionals of the strength of their reactions, implying a possible hidden pool of trauma. Implications for the practice of ECT are discussed.

Introduction

Although ECT (electroconvulsive therapy) is widely used in depression and some other conditions, it continues to attract controversy. Disagreement mainly centres around the possibility of memory loss and intellectual impairment, with the generally accepted official view being that `As far as we know, ECT does not have any long-term effects on your memory or your intelligence’ (Royal College of Psychiatrists, 1997). Although the debate about cognitive impairment has received much attention (Breggin,1991; Frank, 1990; Friedberg, 1976), the question of possible unwanted psychological effects has, until recently, been almost totally neglected. No mention is made of them in most summaries of adverse effects, such as that in Weiner & Krystal ( 1994). The ECT handbook contains a single paragraph referring briefly to pretreatment anxiety (Royal College of Psychiatrists, 1995). This omission has been commented on both by psychiatrists: `Doctors who give ECT have shown remarkably little interest in their patients’ views of the procedure and its effects on them and only recently has this topic received any consideration in the literature’ (Abrams, 1997) and by service users: `What is never discussed in the literature is the profoundly damaging psychological effects ECT can have’ (Lindow, 1992).

This is in contrast to earlier, mainly psychoanalytic, theorising about the psychological impact of ECT. Psychogenic theories of ECT’s action were summarised in a review article by Cook (1944). Earlier belief in the therapeutic effects of fear had been largely replaced by theories about the healing nature of this symbolic death and re-birth. There was speculation along Freudian lines that the fit `by its severe motor manifestations “discharges” large amounts of energy inherent in the destructive and death drives and unloads them in a…harmless manner’. Gordon (1948) listed 23 possible psychological explanations of ECT’s effects, such as the destruction of narcissistic protective patterns and the eroticising of the body. Some clinicians believed that these and other hypothesised reactions, such as the relief from guilt and selfpunishment following the experience of ‘a sadistic, real attack’, made the conjunction of ECT with psychoanalysis a particularly fruitful one (Weigart, 1940 in Boyer, 1952). Boyer includes a lengthy case history in which the young female client equates ECT in fantasy not only with death and re-birth, but also with intercourse, castration and impregnation, with ultimately favourable results in her therapy.

On a less positive note, Abse & Ewing (1956) noted that conscious attitudes towards ECT are `time and again’, in long-term therapy, succeeded by feelings that it was cruel and destructive. There is ‘a revival of threatening and punitive parental figures’ who are often, like the physician, initially credited with good intentions. The ECT appears to arouse anxiety and fear, while at the same time holding out hope of forgiveness and a fresh start. Wayne (1955) noted that certain aspects of the procedure may evoke unconscious meanings in both doctor and patient; for example, `It has all the characteristics of an overwhelming assault…and this can be documented by the reactions of some patients who have had this treatment’. Fisher et al. (1953) investigated the conscious and unconscious attitudes towards ECT in 30 psychotic patients, and concluded that `the majority of patients found electric shock to be a traumatic experience’. D.W. Winnicott ( 1947) argued that psychological reactions to ECT often compounded patients’ difficulties and defences; for example, obsessional people might need to become even more controlled.

An exception to these analytically-orientated accounts is Warren’s (1988) description of the implications of ECT for the self and for family relationships. In her interviews with ten women admitted to a state hospital in California between 1957 and 1961 and their relatives, there was uniform confusion and bewilderment at the loss of memory in everyday life. Sometimes this forgetfulness, for example of previous hostile outbursts, was welcome to their husbands. Fear of future ECT stopped some women from confiding emotional upsets, and family relationships were subtly altered all round.

With the general decline of psychoanalytic influences on psychiatry, theorising and research in this area appears to have been abandoned until Gomez’s survey (1975) of side-effects in 96 ECT patients. Findings from this and other attitude studies (for example, Freeman & Kendall,1980; Hughes et al., 1981; Kerr et al., 1982) were reviewed in Freeman & Cheshire (1986). Subsequent studies by Malcolm (1989), Szuba et al. (1991), Riordan et al. ( 1993) and Pettinati et al. (1994) used essentially the same format of asking patients to respond to questions or complete checklists about their attitudes to and experience of ECT. The conclusions from this series of investigations can be summarised as follows:

Most people appear to find ECT helpful (varying from 83% in Hughes et al. to 56% in Riordan et al.).

Most people also report side-effects, (around 80% in all studies),with memory impairment complained of most frequently, and headaches and confusion mentioned less frequently.

Most people do not seem to find ECT particularly frightening to receive (Freeman & Kendall); 50% less so than a visit to the dentist. However, a majority does experience some level of anxiety (74% in Gomez, 69% in Riordan et al.), and a significant minority reports much stronger reactions; (13.1% said it was so upsetting that they would not want it again, Freeman & Kendall; 14.3% say it was more upsetting than surgery, Pettinati et al.; 23.7% agreed with the statement that ECT is a barbaric, inhumane treatment, Kerr et al.).

Most people do not report other anxieties about ECT, although a minority does mention worries about brain damage. Death, personality change and being anaesthetised are also feared by some.

Most people who have had ECT are profoundly ignorant about the whole procedure, and say that they were given no or inadequate explanations. (Sixty-nine per cent did not know that ECT involved a convulsion, Hughes et al. Only 21% said they were given a good explanation of the procedure, Freeman & Kendall.) It is not clear how much these findings were influenced by memory loss.

(Two other studies produced broadly similar results, but are not directly comparable to those described above because scores for each item were averaged across all responses. See Calev et al., 1991; Baxter et al., 1986.)

In summary, these studies would seem to justify Freeman & Kendall’s (1980) oftenquoted conclusion that patients find ECT ‘a helpful treatment and not particularly frightening.’ However, there are reasons for believing that the picture may be more complicated than this.

First, there are the limitations acknowledged by Freeman & Kendall, which may apply to some extent to all these psychiatristled investigations: `It is obviously going to be difficult to come back to a hospital where you have been treated and criticise the treatment that you were given in a face-to-face meeting with a doctor.’ Earlier researchers certainly found such factors to be relevant: `The majority of the patients seemed to be motivated by the idea that any criticism that they might make of shock would in an indirect sense be a criticism of the psychiatric staff…patients expressed themselves sincerely only after the interviewers spent considerable time in establishing a relationship’. (Fisher etal., 1953.)

Secondly, there is the unusual degree of compliance noted by several investigators, who were puzzled by patients’ willingness to agree to ECT despite being anxious and illinformed: `We were left with the clear impression that patients would agree to almost anything a doctor suggested’ (Freeman & Kendall, 1980). Referring to the same phenomenon, Riordan et al. (1993) suggested, `This may reflect a high level of trust, or a resigned lethargy, in part reflecting mental state, but also a feeling of lack of involvement in their own management’. Freeman & Kendall (1980) quote a particularly striking example: `Two patients who misunderstood the initial appointment letter … came fully prepared to have a course of ECT. Neither had been near the hospital for nine months and both were quite symptom-free.’ Little attempt was made to explore the meaning of this kind of behaviour, but it does raise the question of whether the absence of criticism reflects satisfaction, or merely learned helplessness and passivity.

Thirdly, there is the fact that a minority of people in all the studies did express very strong negative feelings about ECT, although this has been obscured by focusing on the majority view. In the only paper that acknowledges this as a problem, Fox (1993) describes how a `difficult-to-elicit, etiologically obscure and currently underrecognised “pathological” fear of treatment develops in some proportion of patients undergoing ECT…Fear of ECT merits further study’ .

Fourthly, there are several recent surveys carried out by investigators from outside the hospital setting which paint a much less reassuring picture. In the first one, UKAN (United Kingdom Advocacy Network) received 306 replies to a questionnaire distributed through UKAN- affiliated groups, Mindlink and Survivors Speak Out (both the last being serviceuser run organisations). Overall, 35.1% described ECT as ‘damaging’ with another 16.5% saying it was `not helpful.’ Although 30. 1% found that it was helpful or very helpful, those who did not were likely to express very strong views against it, using words like ‘brutal’, ‘barbaric’ and ‘degrading’. Psychological after-effects included loss of confidence, dignity and self-esteem; fear of hospitals and psychiatry; anger and aggression; loss of self; and nightmares (Ukan, 1996). Similar themes emerged from a series of semi-structured interviews with 516 psychiatric patients contacted through MIND (Rogers et al., 1993). While 43% found ECT helpful or very helpful, a large minority (37.1 %) said it was unhelpful or very unhelpful, with a high proportion of the latter group strongly condemning it. Psychological effects included fear, flashbacks and nightmares. The same themes emerged from two smaller surveys by two researchers who had had ECT themselves, (Wallcraft, 1987; Lawrence, 1997) and from MIND’s (1995) survey on `Older Women and ECT’ . In addition, the recently formed organisation ECT Anonymous has collected several hundred reports from people who say that ECT has had a variety of disabling physical and psychological effects on them. However, respondents from all these sources were self-selected and might show a bias towards greater dissatisfaction.

In summary, all of the more recent research acknowledges that a proportion of people have very strong reactions against ECT, although very little is known about the nature of, and reasons for, these adverse psychological effects. The differences between the reported rates of adverse reactions (varying from 13.1% in the hospital-based surveys to 35.1% in the others) also remain puzzling.

While some of the earlier accounts may seem far-fetched, they do make an important point that has been over-looked in most subsequent surveys, that `there are crucial psychodynamic events involved in…organic therapy’ ( Abse & Ewing, 1956) and that attitudes can influence the outcome of the treatment.( Fisher et al., 1953; Hillard & Folger, 1977). Clearly, we need to know more about the meanings that ECT carries for a certain number of recipients, and which make it such a traumatic event for them. This may also throw some light on issues such as compliance and its possible effects on participants’ responses. In order to investigate these areas, the existing questionnaires and pre-structured checklists of possible reactions need to be complemented by an approach that allows a detailed, in-depth exploration of the experiences of those people who find ECT a distressing event, entirely separate from the hospital setting. For these reasons a qualitative design was used in the present study.

Participants

The study targeted people who had had negative reactions to ECT. They were recruited by posters and flyers asking, `Have you been given ECT? Did you find it upsetting or distressing in any way?’ which were distributed through local mental health voluntary organisations. Twenty-two people contacted the researcher, and 20 were eventually found to fit the criteria. There were 12 women and eight men, with an age range of 27-63 years. One of the men was a female-tomale transgender. Ten were unemployed, and ten were involved in voluntary or paid work. Two described themselves as mixed race and the rest described themselves as white.

Participants were not always able to be precise about the details of their treatment, but nine of them reported that they had had more than one course of ECT, and six had had at least one course under section. The most recent course of ECT was 2-5 years ago for five participants; 5-10 years ago for five participants; 10-20 years ago for six participants; and 20-30 years ago for four participants.

It can be seen that within the overall category of adverse reactions to ECT, participants represented a wide range of backgrounds and treatment circumstances.

Method

The aims of the investigation were explained to the participants, and confidentiality was assured. The researcher emphasised that she had no current connections with psychiatric teams. Participants were invited to take part in a semi-structured interview at a place and time convenient to them, concerning all aspects of their experiences of ECT. Interviews were tape-recorded and transcribed, and a thematic analysis was performed on the results.

Results

Themes can be organised under the following main questions.

What were the circumstances in which you came to have ECT?

Participants described their mental states at the time mainly in standard psychiatric terms, for example:

`I’m diagnosed as manic-depressive, and in those years I did suffer from some form of depression rather than mania, and I suppose I went into such deep depression that they thought ECT would help to get me out of it’.

‘I was just really depressed and I was getting a bit manic as well, and I didn’t seem to be responding to the medication, and they said I should have a course of ECT’.

However, as the interviews progressed, more complex background situations emerged:

‘I always knew I had problems that were emotionally-based, to do with my life. And although I’d gone in partly under the influence of drugs, LSD, I also knew when I was growing up that I had some problems ‘.

‘I was a very mixed-up and distressed person, and then my closest friend was killed six weeks after I got married…and my world fell apart’.

‘I was in nursing… One day I was a student, the next day I was qualified and in charge of a ward, which I wasn’t trained to do. I was just too young for the job ‘.

`If I look back on what caused the depression and what caused me to try to take my life, it was quite normal, average things…a divorce, I had two children, I was three months pregnant when I left…holding three jobs down, mundane jobs, trying to keep it going really. I was worn out, absolutely worn out’.

What kind of explanation of ECT were you given?

A problem here, as with other questions that asked for specific details about events, was that many participants had uncertain recall due to the effects of ECT itself. As in other surveys, nearly everyone felt that explanations had been completely inadequate or lacking altogether, and that there had been minimal opportunity for discussion.

‘I don’t remember anything being explained. I think they just said they were going to attach these things. I don’t remember any discussion beforehand’.

`She said, “I don’t think the Valium ‘s doing you any good, so I’ll put you on ECT”.

Why did you agree to have ECT?

Six of the participants had had ECT under section on at least one occasion. The answer to the puzzling question raised by other researchers, of why the others consented despite inadequate explanations and the fact that many of them already had doubts based on the experiences of relatives or other patients, lies in their feelings of extreme desperation and powerlessness.

‘I was so ill, I felt so desperate, I didn’t know which way to turn. I was just looking for answers as to why I was so strange, so peculiar’.

‘I wasn’t in a fit state to make any of those decisions. We were just grasping at straws, trying to find an answer’.

`If you’re at your wits’ end and they’ve drugged you up to the eyes you don’t question.. you’re not thinking straight anyway ‘.

This desperate desire to get better was often coupled with a tendency towards compliance and a strong assumption that `doctor knows best’. Moreover, participants felt they could not risk alienating these powerful people who seemed to hold the key to their cure: ‘I was a very compliant young woman, I was very frightened of everybody and that was part of the problem… wouldn’t have known how to object, it wasn’t on the horizon. You didn’t disagree with doctors, you did what they said’.

`You believed that whatever they were going to do was going to work, you believed what you were told really’.

`He is the one with the power, he is the one ultimately that has the answer…if that’s the only help you’re getting you’ve got to hang on to it’.

A man who ended up completing his course of ECT despite his own reluctance and encouragement from the nursing staff to refuse it, put it like this:

`It was like, the consultants and the psychiatrists have such a powerful influence over you. In one sense your life is in their hands and it’s wanting to please them, I suppose, because…part of depression is losing your sense of self really, and you’re so easily influenced and so easily willing to accept authority’.

One woman found that her refusal to have further courses of ECT was, in fact, respected. Others who were able to be assertive were not so fortunate:

`They asked me if I would agree to it, but they did say if I refused they’d go ahead with it anyway…being forced to stay there is bad enough but being forced to have something that you don’t want is ten times worse, so I did agree, yes

`Now what so often happens in psychiatric hospitals is, it’s not the psychiatrist that forces you to have it. Long before that happens you get confronted by staff nurses who are very anxious to stop hassle.. . so what they do, they see that you’re weak and vulnerable and they say, `You’d better sign’, just like that’.

‘I said immediately that I didn’t want it, and I pointed out that the previous consultant… had said to me that she didn’t think I was an appropriate case for ECT.. and he (the consultant) got into a real huff basically and got up and walked out of the room…I felt absolutely devastated. I just burst out crying and didn’t know what was going to happen to me, or whether they were going to section me, or what’.

In summary, nearly all participants wanted to emphasise how far their apparent agreement was from being fully informed consent: ‘I wasn’t physically taken to the suite or anything, I walked there on my own, but If elt it was forced on me’.

What was the actual experience of ECT like?

Six people said that ECT was not particularly frightening to receive, although one woman attributed this to the numbing effects of her medication. All the other participants reported a very high level of fear, with a lack of accurate information sometimes supplemented by observation of other patients who had had ECT and by their own imaginations: ‘I really didn’t know what to expect, so I was absolutely terrified…I imagined great big metal things being put each side of my head and, like, sparks coming out, thunder and lightning, and my whole body shaking’.

`When you’d been on the ward there were certain people who had had ECT and all the other people were very scared by this.. you would see them afterwards when they couldn’t remember who they were and were very confused and had terrible headaches and weren’t themselves at all’.

All this generally produced a high level of anticipatory anxiety:

‘I remember the very first time I had it, walking down to the ECT (suite) from the ward and I remember feeling very agitated, sick and scared. And when I got into the waiting room there, I came to a standstill. I couldn’t go through with it, I didn’t want it. They talked to me and said I’d signed the consent form and I was under section ‘.

`As they wheeled you in you’d see what they used, they’d put some gel on it, they didn’t even hide it from you… You were scared, yes’. ‘I can remember sitting in the room waiting for treatment and looking at some of the other people who were there as well and I suppose it was almost like a pre-execution room really… We were all sitting there in complete silence. I remember reading in something, I think a hospital pamphlet, (that) it was just like going to the dentist, which is completely absurd.. It’s not like going to the dentist’.

One participant reported that the reality was not quite as terrifying. However, the terror of the other participants remained or even increased as the course continued, and many found the immediate after-effects equally devastating:

‘I thought maybe second time around it’ll be much easier and I won’t feel so scared and terrified, but it was just the same, if not a bit more ‘.

`You dread it, your heart starts pumping, here we go again. Horrible, absolutely terrifying…It’s like going to your death, your doom, isn’t it’.

‘I was absolutely convinced they were trying to kill me…you know, I was so bad and evil, all they could do was get rid of me’. (A woman who was psychotic at the time.)

`They could be doing anything, you don’t know what they are doing…you get paranoid and think they are trying to poison you, or do weird experiments or something like that’. (A woman with a diagnosis of paranoia.)

`Afterwards I felt as if I’d been battered…1 was just incapacitated, body and mind, like a heap of scrunched-up bones’.

‘…Pains in your head and the memory loss, and sometimes I used to have a bruise. I’d be dribbling, I looked insane…1 felt terrible, I was only 22 and I must have looked 82. I just couldn’t do anything’.

When asked what was the most frightening aspect of receiving ECT, participants most commonly mentioned feelings of being helpless and out of control, and worries about long-term damage.

`It’s a horrible sensation. You feel like a zombie, they could do what they want with you when you’ve had that and you would do it, because you don’t know no different’.

`It was the whole treatment, being carted off If elt like a slave, taken away to this little room and put on a bed. No control, it was awful ‘.

`You can’t get it out of your head, how would you end up?…you’d be so brain dead you wouldn’t know what you were doing ‘.

`What I was most concerned about wasn’t the fact that it was unpleasant at the time, it was how it was going to affect me for the rest of my life.. .I remember feeling very disorientated and feeling that I’d been damaged for life ‘.

For several, ECT was a confirmation that they were truly mad, and had reached the last option:

`It seemed to reflect how ill I was, the fact that he was saying I had to have ECT this time…this was the last desperate thing that they do’.

`It was because this was the last resort.. so what is there left, annihilation or what?’

‘I knew I wasn’t crazy. I knew what had happened. (After ECT) I was beginning to think maybe Iam mad.. .I must be mad to have ECT’.

What other emotional or psychological effects has ECT had on you?

Fear is the only psychological reaction to ECT that has been investigated to any extent. However, these participants described a complex range of emotional responses including feelings of humiliation, increased compliance, failure, worthlessness, betrayal, lack of confidence and degradation, and a sense of having been abused and assaulted:

`It made me feel like a cabbage, like I wasn’t worth anything at all. All I could do was sit around all day’.

`It was like I was a non-person and it didn’t matter what anybody did to me’.

‘I suppose I saw myself as worthless for a long time…almost being an empty person and having to start again, having to build up a personality, having to build yourself up’.

`It’s horrible to think that these people, doctors and nursing staff, are going to see you having a fit. It’s degrading’.

‘I knew that the only way I could get out would be by being insignificant…by being a very good patient, and it worked. I wasn’t any better, If elt quite terrible’.

‘I suppose as a woman, If feel. .. a lot of stuff was reinforced. You know, being the gender I am, it feels like you have to comply even more ‘.

`It made me feel like a freak, and it’s only since I’ve talked about that with a therapist about two years ago that I’ve got over that feeling ‘.

`This psychiatrist had built this relationship with me, so I trusted him and then he did that (prescribed ECT)… This chap had been clued up enough to realise he needed to build my trust, but didn’t appear to be clued up enough to know that giving somebody electric shocks to their head might actually damage that trust…ECT I feel is just such a betrayal, this frightened young woman and they do that. Terrible’.

`It’s a really horrible feeling…a sense of failure, and what’s wrong with me that I’m not getting better’.

`It felt like I had been got at, yes, bashed, abused, as if my brain had been abused. It did feel like an assault’.

Most people said that they did not mind others knowing that they had had ECT. For some, though, the perception by them and others that ECT is an intervention reserved for the extremes of madness, produced a strong sense of shame and stigma:

‘I was deeply, deeply ashamed of having ECT…this was real serious stuff, this was a mad person’.

`People can’t imagine what on earth situation you need to be in, that you need to be electrically shocked. So they imagine that you must have been some kind of absolute raging animal or something to need that. ‘ ‘I have told a couple of people in the past and they think for you to have ECT you must really be off your rocker’.

ECT was experienced by several participants not just as a sign of madness, but also as a punishment for and confirmation of badness.

`At that time I was completely convinced I was being punished for something.. . . thought, well, I must have done something wrong to be treated like this’.

`Maybe if I had been good or if I hadn’t done this or that, I wouldn’t be punished. Yes, I thought it’s a form of abuse, a punishment ‘. Three of the women identified themselves as survivors of child sexual abuse. Of these, two drew explicit parallels between these early experiences and the experience of being given ECT, in terms of the emotions experienced at the time, confusingly mixed feelings towards both psychiatrists and original abusers, and inability to deal with their own powerful feelings of helplessness and rage afterwards:

`It certainly felt, “Do what you like “, and that’s something If elt as a child, that I had no power, there was no way I could stop anyone doing whatever they wanted to me, so rather than get hurt I’ll let them do it and maybe they’ll like me…especially because it was men doing it, the men actually operating the machinery or whatever, and I can remember it was men putting the needle in. Yes, again there would have been no way I would have said I don’t want this..And then just sort of lying there, feeling really frightened and yet completely passive. So it was like all trapped, all my emotions were trapped anyway and my feelings were trapped, so it was all trapped inside. And on the other hand not caring what happened to me’.

`I’ve had physical abuse as a child and I’ve had sexual abuse as a child and mental abuse as a child. I suppose I did think about it a couple of times going through the ECT, that this was some form of abuse, being put on you when you don’t want it, or being more or less said that you’ve got to have it…l sometimes feel very angry to the people involved, that I can’t get back at them or take revenge at them. So that I don’t do that, I self-harm, I cut myself ‘.

(LJ)`Who do you want to get back at?’ `Sometimes it’s the doctors, the professionals, sometimes it’s the abusers that have abused me… always tend to turn it in on myself I’ve been told many times by doctors and counsellors, “You’ve got to stop turning it on yourself”, but I don’t…It’s like If feel I need to punish myself, maybe all the abuse is all my fault’.

Although this investigation did not specifically seek to investigate the effects of ECT on memory, nearly all participants spontaneously reported some degree of loss. While acknowledging that medication and depression itself can affect the memory, they nevertheless believed that ECT had also been an important factor, and this caused much concern:

`Sometimes it really affects me, I break out in a cold sweat. Have I really got brain damage?’

`It’s not the thought disorder that’s disturbing me now, it’s the damage done by the ECT… I’ve probably got another 50 years to go, and I thought, well, I’m going to be damaged for the rest of my life’.

Some participants had lost large pieces of their lives, which was particularly upsetting where the memories involved young children:

`My memory is terrible, absolutely terrible. can’t even remember Sarah’s first steps, and that’s really hurtful…losing the memory of the kids growing up was awful ‘.

‘I can’t remember when they started junior school, I can’t remember when they left infant school. Now those are things you remember, they’re highlights…and I’m quite resentful really to think that my ex-husband has got more memories of my children and did pretty well nothing to help’.

The commonest complaints were inability to follow films, books or TV programmes, and problems with facial recognition. These disabilities were both frustrating and embarrassing. Less tangible was the general loss of sense of self described by a few participants:

‘I can be reading a magazine and I get halfway through or nearly to the end and I can’t remember what it’s about, so I’ve got to read it all over again. Same with a film or a programme on the telly’.

I can understand the individual sentences but when it comes to taking in the whole story, you don’t know what the hell’s going on really… like reading and I find it very irritating .

`People would come up to me in the street that knew me and would tell me how they knew me and I had no recollection of them at all…very frightening’.

`It happens all the time. It’s tiny little things, which on their own don’t really matter, but it’s this permanent sense of something that you’ve lost. ‘

`It’s a void, I can’t describe it, and there’s also a feeling of something fundamental that I don’t even know what it is missing.. just like an intrinsic part of me that If feel isn’t there and it was once… Part of it feels like there was a real death of something, something died during that time’.

Did ECT have any beneficial effects?

Nine people said that ECT had given them at least some temporary relief from depression, or in one case from hearing voices, although all but two of these felt that the costs had far outweighed the benefits. Two other participants reported a paradoxical effect: ‘I felt I’d reached the absolute rock bottom and I couldn’t go any further. Everything had been tried… Perhaps If elt the ECT gave me permission to get better’.

`In a very bizarre sort of way, because the treatment and the abuse was so terrible, it made me come to my senses. I’ve got to get my act together, I’ve got to help myself.

Two of the nine believed that ECT had ‘worked’ by triggering a high mood. A man with a diagnosis of manic-depression described how ECT had several times precipitated a change from suicidal depression to elation:

‘I felt fantastic… Basically it puts you high, so you need the help then, that’s when you need the help. Not, “aren’t you doing well, how are you feeling on a scale of one to ten, ” “oh about eight or nine, good I can get a job “, “are you, oh fantastic, go out and do it then “. Because you’re sick, still sick’.

A woman who also responded dramatically described it like this:

‘I felt as though I had become a completely different person…I felt as if I had just totally gone off my head. I was totally dependent on the ward and everything and all of a sudden I think ECT had blasted me into this other reality. And some positive things did come out of it because I went out and I worked for a year and I was discharged from hospital.. It was at a very high cost, obviously. You feel you’ve got to adapt to this new person that you are…For a year or two afterwards If elt very mad… felt I’d lost the person I used to be… Too happy, really, too sort of split off from the side that was there before I had ECT, that all disappeared completely’.

Nine years later, this woman felt that she had still not entirely reclaimed her real self.

Did you tell anyone how you felt about ECT?

Most participants had felt unable to tell psychiatrists or other professionals of the strength of their feelings about ECT, for the same reasons that prevented them refusing to have it in the first place. The few who tried to hint at their reluctance and terror felt they had been met with little response:

(LJ) `Did you explain to anyone how traumatic it had been for you?’

`No, I didn’t dare. They had complete control over you, they could lock you up. You can’t be angry with them. People who are, get a really bad time’.

`Once or twice I’ve been able to say that I think it’s a waste of time.. . and they say you’ve got to complete the course now, you’ve got to go through to the end and it’s best for you and you’re not in any fit state at the moment to know what you want. It’s like the power’s. taken away from you all the time’.

‘I can remember asking him (the consultant) about what happened about me coming round (from the ECT) crying, and telling him I felt really frightened having it. And he certainly didn’t acknowledge the fact it was frightening ‘.

‘I always said I wasn’t feeling any better, but they started saying towards the end they thought was feeling better, and I discovered a lot later that on my notes they invented that the ECT had been a successful treatment, and there was no way I was any better.. At the end of the treatment I had a meeting with the consultant who said he thought was biologically cured of depression… The implication was, I suppose, that all the other things were just personal things I’d got to sort out’.

It is perhaps not surprising that the experience of ECT had left some participants with a lasting distrust of mental health professionals and hospitals:

`When I was in hospital last time I was terrified that they were going to give it to me again. They promised they wouldn’t, but can I trust them, can I trust them ? I was terrified, I hated walking across the room where they did it’.

`It was a useful lesson really. It’s not sensible in this world to tell psychiatrists of your, what they call “delusional systems “, and in fact I never told them another one’.

(This woman was feeling suicidal around the time of the interview, but had deliberately not told her community psychiatric nurse. She had previously had ECT under section.) `They’ve only got to mention the word hospital to me and I freak out… when I go into hospital, I won’t trust nobody in there, because my mind runs away with me. Are they going to force me to have ECT?… I know the staff on the ward, I’ve been there so many times, but each time I’ve been and come away, when I have to go back again I try and build that trust up all over again’.

Many participants were very unhappy with other aspects of their psychiatric care, such as the use of medication. However, a number of them made the point that there is something qualitatively different about ECT: the idea of putting electricity through someone’s head carries powerful symbolic meanings which still apply no matter how caringly the intervention is delivered. It can be experienced as a brutal assault on your very self: ‘I think to tie somebody up and zap them with electricity…it goes back to the days of Frankenstein, doesn’t it’.

`Well, it’s an assault on your head, isn’t it? It’s an assault on who you are, you are in your head. And yet you’ve gone to them expecting them to heal you ‘.

‘I would have thought anyone would be apprehensive about something like that, especially when they are messing about with your brain. That’s the centre of your being, isn’t it?’

`They make it all nice, they’re nice to you when you go into the room, they pamper you a bit…talking to you very personably (sic) and all they want to do is jolt you with a thousand volts…It goes back to the Jews, doesn’t it, who went into this room and had a nice shower’.

What other forms of help would have been more appropriate instead of ECT?

Nearly all participants were convinced, looking back, that ECT and all its disadvantages could have been avoided had the right kind of counselling and support been available instead:

`It was so obvious that one of the things I needed help with was grieving for this friend. I needed to be given some way of knowing that I belonged to the human race’.

`You used to say what you thought your troubles was, and she was nice, this doctor I had, and she would talk back and explain everything to me…If I could have carried on with her, on Valium, I would never have had ECT’.

`There was one nurse who was actually a trained counsellor and about three or four years ago I was quite ill and there were things I wasn’t disclosing to anybody, not even friends or whatever, and when I was in hospital I managed to talk to her and it all came out, and that was like a step forward’.

`Although at that particular time I was very very psychotic, I needed to be allowed to be mad, but be somewhere with human decency and not be so restricted…I needed someone to talk to more than anything ‘.

`Somebody sitting down with me in a room on your own, talking to you when you needed it… There were so many people on the ward and only three nurses, so you didn’t get a lot of attention’.

Ten of the 20 participants had ultimately been able to take up a variety of occupations including student, caretaker and voluntary or paid worker in the mental health field. Two of the ten felt that they had recovered largely by their own efforts. The other eight had finally found the help they needed through a mixture of counselling/therapy, self-help groups and support from other service users: `I’ve had private therapy on and off for about 4 or 5 years which I pay for, so that’s helped a lot’.

‘I ultimately found the answer at a tranquilliser withdrawal group. I work for them and we all help and encourage each other, support each other and it’s brilliant. And you have to build back your self-esteem, your self-worth, it doesn’t just happen…and it’s fantastic ‘.

‘I had so much inspiration from other people who were further on (at a support group), and I really just got involved and started helping out there and becoming a bit more empowered…I just knew that’s what I wanted to do, try and help other people in the way that that helped me’.

A common theme in this group was how anger at their treatment had turned their earlier compliance and conformity into assertiveness and a determination never to let others take control over them again:

`It taught me a lesson…always to question, never ever believe professionals, never assume because the doctor is a professional that he knows better than I do about my pain. I’m dreadful in a doctor’s surgery. I do honestly make sure I get my time, I need to know what’s going on. Never let them control me again like they did’.

`It’s really starting to come through now…angry at the way you’ve been treated by people over the years, doormat, really put upon. I’m really starting to realise how badly at times I’ve been treated and now I’m changing that and putting my foot down and speaking out about things I’m not very popular, but that’s too bad. ‘

‘I just feel… very angry, and basically I know my rights so much now, I’m in charge ‘.

But most people still had unresolved feelings about ECT, in some cases many years later:

`Certainly if I do talk or read about ECT it does bring back all these horrible memories of the actual treatment. I always get the same symptoms, headaches, nausea and things’. (23 years on.)

‘I had absolutely terrifying lucid dreams. I couldn’t explain to you how terrifying they are, it’s just beyond words. I started telling this therapist about them to try and make sense (of them) and I always described this feeling as ifI was having electricity… Terrible sensations,feeling like I was just about to die, and very, very lucid dreams, not like ordinary ones, where I wasn’t sure if I was awake or asleep ‘.

`This is one of the problems, when If eel I’m bitter towards this person, perhaps I’m not on Jesus’s side.. perhaps he hasn’t accepted me because I hold this grudge ‘. (A man with strong religious beliefs who was angry with the nurse who had put pressure on him to have ECT.)

‘I do feel very angry, and sometimes I just have to stop myself dwelling on it because if I do I just get very angry. It’s difficult to know what to do with that anger’.

What are your overall views about ECT?

All the participants except one were very clear that they themselves would refuse ECT if they were ever offered it again. The exception was a man who said that he would consent as a `very, very last resort’ if he ever became ill again.

One person thought that there was a place for ECT for some people, and 13 others thought that people should be able to make their own informed decision on the matter.

This was a conclusion generally put forward with some reluctance, with two participants adding that in their personal opinion it should be banned. The six remaining participants had no hesitation in calling for a universal ban even if some individuals wanted to have it.

‘I think it’s up to the individual really. I wouldn’t touch it ever, even if I was really ill…I think if people gave you full information, a lot of people wouldn’t have it’.

`Personally I think there should be a ban, but until that happens I suppose if users feel it might benefit them, then go ahead, but I’d like to see in the next few years a total ban worldwide ‘.

`It is not justifiable to give people something that harms their brains and gives them an epileptic fit on the NHS. It’s just not, in my view, an ethical way to proceed’.

Most participants expressed their overall views on ECT in strong terms. They saw it as a blunt instrument that produced brain damage without dealing with the person’s real problems:

`It’s like being hit on the head by a hammer, that’s the way I would describe it… How do I know they’re getting the right area and don’t kill cells in a different area ? It’s a crude tool ‘.

`Well, it deadens your brain, doesn’t it? That’s what it does’.

`They didn’t have the time and they didn’t have the staff and so I think ECT is just a quick way, a quick job, less expensive’.

`It’s short-term relief…obviously until you find a solution to the problem it’s just going to recur and you’re going to keep on having ECT’.

‘I think it is barbaric giving it to people on the scale that it is. And l ‘ve never actually met anyone who said it had done them any good, so…I don’t know where this eight out of ten figure comes from’. (The proportion of people benefiting from ECT, according to this man’s consultant.)

`Quite barbaric, really, barbaric to put electric shocks through people’s heads’.

‘I think it works by causing brain damage… It knocks out the memory…so being unable to remember the unpleasant feelings, you are less able to feel depressed’.

‘`When you think that shock treatment is a form of torture, then you can see the relationship…It’s very extreme and it’s abusive. Well, it’s not a treatment really, is it, it’s just a violation of a person’s body’.

`To be treated physically for something that isn ‘ta physical complaint.. do object to that for emotional, psychic, spiritual problems’.

`It is inhuman and inhumane. ‘

Discussion

Since this study specifically targeted those with a negative experience of ECT, the results cannot be taken as representative of all ECT recipients. However, the study does confirm that for a certain proportion of patients, ECT is a deeply and lastingly traumatic experience. Few participants doubted the good intentions of the professionals; as one of them put it, ‘I don’t think the psychiatric system is made up of bad people wanting to harm people’. Unfortunately, the fact that professionals genuinely believe that they are acting in the patient’s best interests by prescribing ECT does not guarantee that the patient will experience the intervention as beneficial. This investigation provides ample evidence that organic therapies do carry meanings, and that these meanings, filtered through the individual’ s own background/context and interpretations, influence how such therapies are experienced. Having said this, we must be careful not to discount the possibility that some of their concerns also have a factual basis; for example, that ECT does cause definite cognitive impairment, and anxiety about brain damage is not just a psychological phenomenon but an understandable response to a real danger.

Although participants represented a wide range of treatment circumstances, the themes that emerged from their accounts were remarkably similar. There are a number of areas of particular concern to mental health professionals. First, there is the fact that ECT may be undermining therapeutic work in ways that professionals are unaware of. One woman appreciated her psychiatrist’s sensitive attempts to build a relationship with her, but lost all trust in him when he subsequently prescribed ECT. Another was encouraged to direct her anger outwards, while simultaneously being forced to undergo a treatment that increased her anger and self-blame to the point of self-harm.

Secondly, ECT may actually exacerbate existing psychological problems. Some participants who already believed themselves to be bad, saw ECT as confirming this. Several woman who saw unassertiveness as having been part of their problems, received the message that they must comply and keep quiet. A man whose religious beliefs had caused him great conflict was deeply worried about his unresolved anger about ECT. In addition, ECT seemed to feed into two women’s delusional beliefs; one was convinced that she was being killed, while another thought that `weird experiments’ were being carried out on her. Feelings of shame, failure, badness, unworthiness, self-punishment and helplessness are common features of depression, and in so far as ECT reinforces them, it will obviously be unhelpful. Perhaps most worrying were the cases of the two women survivors of sexual abuse who clearly experienced ECT as a re-abuse. Given that an estimated 50% of women in psychiatric hospitals have suffered sexual and/or physical abuse in childhood (Williams & Watson, 1994) and that ECT is most commonly used on women, this raises the disturbing possibility that a number of patients are, in effect, being re-abused in the name of treatment. Thirdly, ECT may be leaving some people with a distrust of psychiatric services that undermines any future attempts to form therapeutic relationships. They may be both unhelped – perhaps even in a worse state and at the same time harder to reach.

It is important to appreciate how powerless and vulnerable psychiatric patients perceive themselves to be in relation to the professionals. The apparent willingness to consent to ECT remarked upon by other researchers may merely be a case of desperation and compliance temporarily overcoming terror and reluctance. Similarly, what seems like a successful outcome may simply be conformity and a fear of confiding one’s true feelings to professionals.

Powerlessness, control and conformity were themes that constantly recurred in the participants’ responses. They came for help feeling confused, helpless and desperate. The help they were offered was experienced as a further loss of power and control which left them even less able to protest and assert themselves than before. None of them had felt able to convey the strength of their feelings about ECT to mental health professionals, implying a possible hidden pool of distress that is unlikely to be picked up by hospital-based surveys; hence, perhaps, the disparity in reported rates of psychological trauma after ECT.

The most optimistic outcomes were for those who were ultimately able to direct their anger outwards, reverse their previous pattern of compliance and take control of their lives again. That they were able to do this despite rather than because of their treatment, and mainly with help from outside the psychiatric services, is a matter for profound concern

What lessons can be learned about the use of ECT from this survey?

Standards for the administration of ECT are still very variable, as the most recent audit (Duffett & Lelliott, 1998) indicates. The participants in this study particularly objected to lack of discussion beforehand, seeing trolleys and equipment as they waited, overhearing people being given ECT, and distant or offhand staff attitudes. All this could be remedied relatively easily, in line with measures already suggested by other researchers, but at the risk of being seen as hypocrisy or window-dressing; it is the central fact of having electricity passed through your head that was so unacceptable to these participants. Not only did this carry powerful symbolic meanings, it was also seen as irrelevant and damaging. The superficial adoption of psychiatric terminology (`manic-depression’, ‘psychotic’ and so on) disguises the fact that participants believed they had broken down for reasons which a physical intervention obviously could not address. This mismatch of models, with the professionals offering biomedical explanations and treatments while the patients tend to prefer psychosocial ones, has been noted by other researchers (Rogers et al., 1993.)

Also problematic is the call for fuller information on both positive and negative effects. The issue of what counts as accurate information about ECT is still controversial, although these participants are in line with some critics in believing that it can cause long-term brain damage (Breggin, 1991; Frank, 1990). Whether or not they were correct in reporting that no one had discussed ECT adequately with them, it seems clear that they would consider many current factsheets (for example that produced by the Royal College of Psychiatrists 1997) a highly misleading portrayal of possible cognitive and psychological consequences.

Whatever the true figures about adverse reactions to ECT, professionals obviously need to be very alert to the expression of fear or distress and to take such feelings very seriously, since such patients are likely to find ECT not only unhelpful, but actually damaging. It should be emphasised that consent can be withdrawn at any time, even after signing the form. The most constructive overall response may be to heed the call for much more access to counselling and general emotional support as an alternative to ECT. This is consistent with other recent surveys of service user views on treatment, for example those by MIND ( 1993), and the Mental Health Foundation ( 1997).

For some, the present findings will raise the question of whether there is a place for ECT at all. If up to a third of people will suffer psychological trauma after ECT, and if there is no way of identifying these individuals in advance, the ratio of costs to benefits may begin to seem unacceptably high. As always, more research is needed. However, this should not be an excuse for complacency about the experiences of those for whom the description of ECT as ‘a helpful treatment and not particularly frightening’ is profoundly untrue.

Acknowledgements

I am grateful to Dr Kate Gleeson for supervision,to L.R.Frank, Sue Kemsley and Dr Viv Lindow for their helpful comments and to Natalie Hall fot transcribing the interviews.

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LUCY JOHNSTONE

University of the West of England, St Matthias Campus, Oldbury Court Road, Fishponds, Bristol, UK

Address for Correspondence: Lucy Johnstone, Senior Lecturer in Clinical Psychology and Counselling, University of the West of England, St Matthias Campus, Oldbury Court Road, Fishponds, Bristol BS 16 2JP, UK. Tel: 0117 965 5384; Fax: 0117 976 2340; E-mail: Lucy.Johnstone@uwe.ac.uk