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Memory and cognitive effects of ECT: informing and assessing patients

Advances in Psychiatric Treatment (2006), vol. 12, 228 238

Harold Robertson & Robin Pryor

Abstract:

Over the past few years electroconvulsive therapy (ECT) has come under increased scrutiny in the UK, with the first systematic review of patients’ experiences and new national guidelines. Our aim in this article is to translate recent and sometimes confusing research and policy statements into practical guidance that benefits patients. We examined the evidence on the permanent memory and cognitive effects of ECT, with a focus on delineating their nature, understanding how ECT may cause them, informing prospective patients about them, and assessing their impact on former patients. We describe a simple and effective method for assessing retrograde amnesia. Data do not exist at this time to confirm the mechanisms by which ECT exerts its adverse effects, but clinicians should fully inform patients of the possible permanent adverse effects of the treatment, which include amnesia, memory disability and cognitive disability, and should provide follow-up testing using relevant instruments.

In January 2002, as part of a review of electroconvulsive therapy (ECT) undertaken by the UK’s Department of Health, the Service User Research Enterprise (SURE) published the first-ever systematic review of patients’ views on ECT (Service User Research Institute, 2002). The review encompassed several large-scale surveys by or of people who had received ECT in the UK (United Kingdom Advocacy Network, 1996; ECT Anonymous, 1999; Pedler, 2000). In April 2003, the National Institute for Clinical Excellence (now the National Institute for Health and Clinical Excellence, NICE) issued guidance on the use of ECT, and at the same time, the UK ECT Review Group published a review of its safety and efficacy (National Institute for Health and Clinical Excellence, 2003; UK ECT Review Group, 2003). The Royal College of Psychiatrists has established the ECT Accreditation Service and revised its guidelines for practitioners to take into account the NICE advice (Royal College of Psychiatrists, 2005).

Some of the conclusions to come out of the new work - in particular, that at least one-third of patients experience permanent amnesia (Service User Research Institute, 2002; Rose et al, 2003; Scott, 2005), that half of patients had not received an adequate explanation prior to treatment (Rose et al, 2003, 2005; Philpot et al, 2004) and that newer methods of ECT have not resulted in an appreciable decrease in adverse effects (UK ECT Review Group, 2003) - suggest that changes are overdue in both practice and policy.

The new evidence presents opportunities for improving clinical care in several areas: delineating the nature of ECT’s permanent adverse effects; developing adequate and relevant tools to assess patients; and providing consent that is fully informed.

Defining deficits

It is evident from a close reading of patient reports such as those documented by SURE that ‘memory’ is too simple a term to encompass the range of ECT’s permanent adverse effects, yet there has been almost no work done on improving terminology (Box 1). The confusion goes back to the first instrument specifically designed to assess people given ECT, the Squire Memory Questionnaire (SMQ; Squire et al, 1979). The SMQ was developed to distinguish between the cognitive impairments associated with depression and those caused by ECT. Although Squire and his colleagues believed that they had done this (Squire & Slater, 1983; Squire & Zouzounis, 1988), others have not used the test for its intended purpose, and it is hard to say whether the SMQ has muddied the water more than it has cleared it. Although often spoken of as if it measured a unitary entity ‘memory’, the SMQ actually encompasses multiple dimensions of cognition: attention, alertness, concentration, learning. It does not at all address the most common effect of ECT, which is variously called amnesia, retrograde amnesia or memory loss. By these terms is generally understood the obliteration of a specific time period in a person’s life.

It is when ‘memory’ is used as a shorthand term for both retrograde amnesia and ongoing difficulties with memory function in the present that confusion ensues, a confusion that intensifies when the latter is sometimes called ‘anterograde amnesia’. Although most will understand anterograde amnesia to mean ongoing memory disability, this is not always the case. The US National Institute of Mental Health has defined anterograde amnesia as the inability to remember events that happened after ECT (National Institutes of Health, 1985) and the College’s new handbook (Royal College of Psychiatrists, 2005) appears to use it in the same way.

To confuse matters further, the term ’short-term memory loss’ is sometimes used as a synonym for anterograde amnesia. Short term to some will mean temporary, to others it will be seen as a description of the type of memory that is affected - the ability to retain information for a short period, or working memory (Baddeley & Hitch, 1974) - which says nothing about its longevity. The term ‘temporary’ rather than ’short-term’ should always be used to refer to effects that resolve, but even then it should be used with caution because neuropsychology recognises that transient impairment of cognitive function may have residual permanent effects. ‘Dysfunction’ or ‘disability’ should be used rather than ‘loss’ (which implies a one-time event) to refer to ongoing difficulties with memory ability and cognition.

If the term anterograde amnesia must be used, it should be clearly defined as difficulties with memory in daily life, and examples given (Box 2).

Inevitably, memory overlaps with and subsumes other cognitive functions, such as learning and attention as well as overall intelligence. When individuals who have had ECT report ongoing memory disability, it is necessary for a clinician
trained in neuropsychological evaluation to tease out the roles played by attention, concentration, overall slowed mental processing and deficits of executive function such as inability to shift mental set. The ECT psychiatrist and treatment team may not be trained in neuropsychological evaluation, since outside of research settings it is not routinely performed on people who have had ECT. When it is, it is usually initiated by the patient, not the doctor. Because of this, the treating psychiatrist may fear personal liability and thus be unwilling to attribute deficits to ECT.

It has long been known that ECT can produce deficits in non-memory-related cognitive function (Calev, 1994). However, long-term studies comparing controls and people who have had ECT to determine when and if non-memory cognitive function normalises after ECT have not been done. A comprehensive battery of neuropsychological tests carried out on individuals who had had ECT between 9 months and 30 years previously revealed impairment on a range of measures, even after controlling for the effects of illness and medication (Freeman et al, 1980).

Despite recommendations that psychiatrists inform patients of non-memory cognitive after- effects (Calev, 1994) and warn them that ‘they are not going to function well on more tasks than they anticipate’ (Calev et al, 1995), patients are still routinely not informed about these effects; there is no mention of them in the recommended consent forms of the American Psychiatric Association (APA; 2001), the Royal College of Psychiatrists (2005: Appendix 1V) or the manufacturers of ECT equipment. This may contribute to the consistent findings (Rose et al, 2003, 2005; Philpot et al, 2004) that half of people given ECT say they did not receive an adequate explanation of the treatment.

The current APA consent forms not only contain no warnings about adverse effects on cognition, but advise that ‘Most patients report that memory is actually improved by ECT’ (American Psychiatric Association, 2001). This statement is contradicted by all service-user research as well as the findings of SURE (2002) and NICE (2003); indeed, Scott (2005) remarked that NICE took ’special note of the evidence from users that cognitive impairment after ECT often outweighed their perception of any benefit from it’.

Is it depression?

If the task of assessing amnesia, memory disability and cognitive deficits is left to a patient’s treating psychiatrist, there may be a tendency to attribute all deficits, without evaluation, to depression, even when the patient has fully recovered. The APA guidelines state that

‘Patients with the greatest symptomatic benefit from
ECT typically report the greatest improvement in
subjective evaluations of memory. Thus, when patients
report subjective memory impairment after ECT, their
mood as well as their cognition should be assessed’
(American Psychiatric Association, 2001: p. 72).

It seems that this statement is based on SMQ scores from six studies: Pettinati & Rosenberg, 1984; Weiner et al, 1986; Mattes et al, 1990; Sackeim et al, 1993 and Coleman et al, 1996, which involved the same patients; and Sackeim et al, 2000. On average, patients reported improvement in cognitive functions assessed by the SMQ within 1 week of ECT. However, the following should be taken into account: first, the improvement was relative only to immediate pre-ECT status, not baseline, thus in fact reflecting a net impairment; and second, objective testing revealed that the patients were in fact cognitively impaired post-ECT. There are other studies in which patients reported impairment post- ECT on the SMQ (Squire et al, 1979; Squire & Slater, 1983; Squire & Zouzounis, 1988). To the extent that a handful of studies support a claim of correlation between memory and cognitive self-rating and mood during or immediately after ECT, there might be a correlation between relatively improved memory self-rating and improved mood. There is no evidence of a correlation between impaired memory/cognition after ECT and impaired mood, much less a causal relationship. The problem of premature assessment There are many reasons why hospitalised patients who have received ECT might overestimate their abilities. After each treatment they experience acute organic brain syndrome (Sackeim, 1986). In hospital, they are not exposed to even minimally taxing actions such as shopping and driving. There are no environmental cues as to what they are expected to know and remember in their roles outside the hospital. In a few days or even weeks, patients cannot gain enough experience of using their minds and memories to accurately assess their altered capacities (Weiner et al, 1986; Coleman et al, 1996; Donahue, 2000). In the longer term, i.e. 2-6 months, patients who initially rated their memory and cognition as improved, experience and accurately report impairment (Weiner et al, 1986; Coleman et al, 1996).

More recent work using the SMQ suggests that, in the short term as well, patient ratings of memory function are negative and are correlated with the results of objective tests, even when controlling for the level of depression. These researchers say that patient reports of memory impairment ‘must not be dismissed as being depressive complaints only’ (Schulze-Rauschenbach et al, 2005).

Differentiating the effects of ECT

Although terms such as memory loss are often used interchangeably by clinicians to describe the temporary effects of depression on cognition (especially attention) and the long-lasting effects of ECT on a range of cognitive functions, this confusion is unnecessary and could be avoided. The effects of ECT are quantitatively and qualitatively different from those of depression (Squire et al, 1979) and researchers have consistently distinguished between them (Cronholm & Ottoson, 1963; Squire et al, 1979; Squire & Slater, 1983; Pettinati & Rosenberg, 1984; Squire & Zouzounis, 1988). Numerous controlled studies show that individuals who are depressed but have not had ECT do not suffer amnesia (Janis, 1950;

Weiner et all 1986). People who have experienced the effects of both depression and ECT rarely mistake one for the other (Food and Drug Administration, 1982; Donahue, 2000): ECT’s effects are different and worse, they occur only after ECT and they persist in the absence of depression and drugs.

Possible mechanisms of action

How might ECT cause permanent amnesia and memory and cognitive disability? There are several theories (Box 3). One is that memory is affected because the applied electrical current is densest in the medial temporal area structures associated with memory, including the hippocampus; these areas have low seizure thresholds. However, this has not been studied directly (Calev, 1994).

Other theories focus on ECT’s effects on brain metabolism and neurochemistry: breach of the blood-brain barrier and increased cerebral blood pressure (Bolwig et al, 1977; Taylor et al, 1985); regional increases in T2 relaxation times (Diehl et a!, 1994); disturbance of the long-term potentiation mechanism (Sackeim, 2000; Rami-Gonzalez et al, 2001); excessive release of excitatory amino acids and activation of their receptors (Chamberlin & Tsai, 1998; Rami-Gonzalez et all 2001), and decreased cholinergic transmission (Khan et al, 1993; Rami- Gonzalez et al, 2001). Even temporary alterations in any of these may have permanent effects on the brain.

Since ECT affects both temporal and frontal lobes, it is logical that its effects would not be limited to amnesia, but would involve both memory and non-memory neuropsychological functions (Calev et al, 1995). Sackeim (2000) hypothesises that the traditional view that amnesia results from damage to medial temporal lobe structures alone may be wrong, since it is known both that frontal lobe damage can result in amnesia as extensive as that seen after ECT and that ECT exerts its most profound effects on the prefrontal cortex.

If this hypothesis holds, then frontal functions must be affected as well as memory. Simply because there has been very little investigation of ECT’s effects on these functions, doctors should not be sanguine as to lack of permanent effects. Absence of evidence is not evidence of absence. In particular, Sackeim (2000) points to the lack of formal research on ECT’s effects on the executive functions of the prefrontal cortex: working memory (holding onto information in the service of a range of cognitive functions), logical reasoning and abstraction, shifting of mental set, problem-solving, planning and organising. These are ‘fundamental to organising one’s life and controlling behavior, yet there has been little investigation of the impact of ECT’ (Sackeim, 2000).

Three trials, two controlled and one small and uncontrolled, support the theory of frontal lobe involvement in functional impairment, although assessments were carried out only during or immediately after ECT (Neylan et al, 2001; Rami- Gonzalez et al, 2003; Schulze-Rauschenbach et al, 2005).

A generation ago, one researcher, reviewing the literature on ECT experimentation, wrote that the ease of its administration has resulted in its widespread use

‘without the usual background information customarily thought appropriate for most treatment modalities o this is undoubtedly the case because of the clinically observed changes in affect and behavior that result from such treatment. While such behavioral observations are certainly fruitful, such a model should be reversed to allow behavioral inferences to the possible effects on neocortical structures of such a procedure’ (Goldstein et al, 1977).

The evidence base

In the absence of long-term follow-up studies over the past two decades, the best available evidence for the permanent effects of ECT on memory ability and cognition has been generated by former patients. This has most often taken the form of patient-designed survey instruments, which ask specifically about cognition. Of the groups whose findings were incorporated into the SURE systematic review, one found that 65% of people who had had ECT reported impaired organisational skills (ECT Anonymous, 1999). Another found that one-third had difficulty concentrating, and 15% reported loss of reasoning ability (Pedler, 2001). A third asked people whether they had experienced a loss of intelligence ’soon after the treatment’, and about 40% answered affirmatively (they were not asked whether the loss persisted) (Philpot et al, 2004). However, former patients have publicly testified that ECT can result in a very significant (>30 point) permanent decrement in IQ score (Food and Drug Administration, 1982; Andre, 2001; Cott, 2005: p. 5) and have documented the claims by extensive neuropsychological evaluation.

Although surveys and case reports are not rigorous controlled trials, in the absence of such trials conducted months or years after ECT, they provide a basis for inferences as to the treatment’s permanent adverse effects and possible mechanisms of action.

What’s wrong with the way patients have been assessed?

Claims that ECT does not have permanent adverse effects on memory and cognitive ability have been based on extremely gross measures of mental function such as the Mini-Mental State Examination (MMSE; Folstein et al, 1975) and other dementia screening scales (Stoudemire et al, 1993; Sackeim, 2000; McCall et al, 2004). But if ECT had produced wholesale dementia on a scale gross enough to be detected by these tests, it would have been abandoned decades ago.

Researchers have used very simple, brief measures to assess patients - typically, highly structured tests of verbal learning involving familiar material. Examples include the Auditory Verbal Learning Test (AVLT; Rey, 1964) and various forms of paired associates, with very short retention intervals. But there is no evidence that ECT interferes with well- established skills such as vocabulary or with short recall periods (Squire & Chace, 1975; Zervas & Jandorf, 1993).

Even people with severe brain injury or lobotomy can perform well on simple tests of overlearned verbal material that require culturally common information, for example the Wechsler Memory Scale. Highly motivated and concerned ECT patients are even more likely to do well on these tests. However, clinicians who conclude from this that there is ‘no memory loss’ have not measured memory loss at all, and certainly not the type of memory and cognitive disability that people can experience after ECT (National Institute for Clinical Excellence, 2003).

Collectively, the comments of people who have had ECT indicate loss of complex skills that underlie real-world roles such as student, professor, nurse or physicist, and often inability to return to those roles post-ECT (Box 4).

The sensitivity of the tests used after ECT depends largely on whether and how well they reflect actual cognitive demands of the type placed on ex-patients. Researchers have assured patients that ECT has no permanent adverse effects on the basis of the assumption that these demands will be minimal (McCall et al, 2004). But this assumption has never been tested, and patient reports warn against it. The ECT patient population includes people who are in the prime of life, highly educated and involved in demanding professions, and who can be very articulate in describing their deficits. If simple standardised tests cannot detect these deficits, the challenge is not to dismiss their comments but to find or devise more appropriate tests.

The Autobiographical Memory Interview

Weiner et al (1986) and Sackeim and his colleagues (Coleman et al, 1996; Sackeim et al, 2000) have attempted to measure amnesia with an unvalidated instrument of their own design, known as the (Columbia University) Autobiographical Memory Interview. This test is insensitive to ECT-induced amnesia in two related ways: it measures very old information whereas ECT amnesia is known to be densest for more recent memory; and as many as 60% of the 200-300 test items involve overlearned and highly rehearsed facts - grandparents’ names, telephone numbers of close relatives, etc. - which are not likely to be erased by ECT. The overlearned and the old information may overlap (as in questions such as ‘What is your address’) or it may not, but in either case confounding the testing with these factors will unnecessarily result in an underestimate of the extent of retrograde amnesia.

Furthermore, the Autobiographical Memory Interview assumes that amnesia is limited to events that took place within the 12 months prior to ECT and does not attempt to assess amnesia that is not limited to that time period. However, only about 20% of the questions ask specifically about that year; the rest ask about overlearned personal information (What are your parents’ names? What are the rooms in your house?) or about events that have ‘ever’ happened to patients or their families.

Thus, it is remarkable that even as insensitive an instrument as this has shown extensive permanent retrograde amnesia measured at 2 months (Cole- man et al, 1996) and 6 months (Weiner et al, 1986) after ECT.

Assessment of amnesia

Routine neuropsychological tests are unhelpful in attempting to assess retrograde amnesia (Rose et al, 2003). Squire & Slater (1983) attempted to measure amnesia by asking people who had had ECT to make a time line showing the amount of life lost. The accu- racy of this depends, of course, on the patients’ ability to assess the extent of their amnesia, which can take many years, as they can only discover what they have forgotten when prompted by others to remember it. If asked soon after ECT, they are very likely to under- estimate the extent of retrograde amnesia.

Because the information stored in memory is unique to each individual, standardised questionnaires or checklists may prove insensitive to amnesia even when the patient can describe or demonstrate it. Janis (1950) interviewed patients before and 1 month after ECT. He suggested general topics but let the patients speak at length. After ECT, he attempted to elicit the same information, but could not. For each individual he could count 10-20 significant life experiences that had been erased that were not limited to the period immediately before the treatment. Even when he prompted patients to recount events they had described in great detail before treatment, they could neither recall nor recognise them. One year after ECT, the amnesias remained stable. The same interviews were given to controls matched in all ways: age, gender, education, duration of hospitalisation, type and duration of mental disorder; the controls, who had not had ECT, had no amnesia.

The Janis test (Janis, 1950) can be done easily and cost-effectively even by those with no special research training. SURE (2002) in particular calls for the replication of this study, as have others over the years. But it has not yet been done.

Assessment of memory and cognitive ability

Tests of memory and cognitive ability must assess a range of functions, because ECT impairment may vary not only between individuals (Goldstein et al, 1977) but within individuals when they undergo more than one course of treatment. Simple tests of rote verbal learning or the memory sub-tests of the Wechsler are not sufficient, since ECT (if the amnesia is not catastrophic) spares vocabulary, overall wealth of knowledge and overlearned verbal skills. Patients who have had ECT should be evaluated with the type of neuropsychological batteries that would be used for patients with a known or suspected history of brain injury. These should include tests of non- verbal and visuospatial memory and reasoning such as those listed in Box 5.

If there are constraints of time and finances, tests should be tailored to the individual’s deficits, which can be identified by narrative self-report and by rating scales such as the Cognitive Failures Questionnaire (Broadbent et al, 1982).
When should patients be tested?

If there is to be baseline testing, compensation must be made to account for the difference between the patient’s true memory and cognitive capacity and the performance when preoccupied by depression, medicated or hospitalised. If such compensation is not made, all a return to ‘baseline’ function after ECT would show would be that ECT’s effects are roughly equal to - although not necessarily the same as - those of depression (Calev et al, 1995).

A better estimation of pre-ECT capacity would be the patient’s history and normal functioning at school, work or in some other capacity. Many patients, at least in the USA, will have had an IQ test, which can be used for comparison with post- ECT scores.

Patients cannot be meaningfully evaluated in hospital during or soon after ECT. Neither self- reports nor crude memory tests may be reliable (Cronholm & Ottoson, 1963). A patient may do well on the MMSE or counting serial sevens but may not know that her friend visited her the day before - and will not know she doesn’t know. Having had no reason theretofore not to trust her memory, and not having been warned to expect severe dysfunction, she will adamantly insist that her memory cannot be faulty. It is not the psychological defence mechanism of denial, nor is it only the acute organic brain syndrome which occurs with ECT, that causes this genuine unawareness. Most patients have never before experienced a day in their life when they did not know what they ate for dinner or who they had seen or what they had read the day before. They do not even know that this is possible, let alone that it is happening to them.

The ECT Accreditation Service (2005) recommends that patients should be interviewed 3 and 6 months after ECT. But at 3 months, they may not have recovered the ability to hold on to day-to-day memories (they may still be within the period of anterograde amnesia, estimated by the US National Institutes of Health (1985) to average 2 months). We propose that follow-up should be no sooner than 6 months. One year allows for optimal stabilisation of permanent cognitive deficits and better assessment of retrograde amnesia.

The Service User Research Enterprise (2002) has called for a research study with ‘long followup because losses of memory prior to ECT may only become apparent after a long interval’, as have Greenhalgh et al (2005: p. 78).

What should patients be told?
Amnesia

The clinician who tells her patients that there is a lack of research on the permanent adverse effects of ECT will certainly be on solid ground; however, this is unlikely to help patients in making a potentially life-altering decision. The best she can do is present her patients with what is known (and not known) and encourage them to assess the risk in light of their personal situation.

Thus, patients can be told that permanent amnesia is one of the ‘common’ (Sackeim, 2000) or ’serious/ frequently occurring’ (Royal College of Psychiatrists, 2005: p. 207) effects of ECT and that it affects at least one-third of patients (Service User Research Institute, 2002; Rose et al, 2003). Such amnesia may be presented as having multiple dimensions: the amount of life lost, the temporal gradient, the nature of what is lost, and the effect of the memory erasure on the individual’s life.

The amount of life lost to amnesia cannot be predicted; patients should be warned that it has been known to extend to 10-20 years (Pedler, 2001; Service User Research Enterprise, 2002). It should be made clear that amnesia is not limited to information about discrete events or to facts that are easily regained, such as dates and telephone numbers, but that it encompasses all thoughts, feelings, personal interactions and relationships, learning and skills associated with the erased time period, and thus there is no simple or easy way to recapture what is lost. Since the temporal gradient of ECT amnesia is the opposite of normal forgetting, patients should be warned that the most recent months or years will be most affected. When amnesia is permanent it has profound, rarely positive, effects on all aspects of the patient’s subsequent life. For many people the effects of permanent amnesia and/or memory and cognitive disability negate any benefit sustained from ECT (National Institute for Clinical Excellence, 2003).

The College now advises psychiatrists to discuss the topic of retrograde amnesia carefully (Royal College of Psychiatrists, 2005: p. 7). But profound and sudden retrograde amnesia has no parallel in ordinary human experience. Doctors cannot be expected to understand the myriad ways in which permanent amnesia can disrupt one’s life. For this reason, prospective patients should be encouraged to speak with, or read accounts written by, people who have experienced amnesia. Such accounts are contained within the above-mentioned reports of SURE, NICE and MIND (Pedler, 2001), and are widely available in print (e.g. Donahue, 2000) and through online forums, e.g. http://www. ect.org) where prospective patients and families can sometimes ask questions directly of former patients.

Cognitive impairment

The Royal College of Psychiatrists (2005: p. 19) and NICE (2003) advise that the potential for cognitive impairment be highlighted during the consent process. Patients should be clearly told that ECT may have serious and permanent effects on both memory ability and non-memory cognition. These are best described in everyday terms: ‘the ability to plan and organise and get things done’ rather than ‘executive function’.

Intact memory and intelligence are highly prized in our culture. The more valuable a possession, the more important it is to know about even a small chance that it might be permanently lost. Even if the answer to how often IQ is permanently lowered is ‘We don’t know’, that is a material fact to be weighed by the patient. As individuals, patients vary greatly in the demands placed on their intellect and the potential consequences of permanent impairment. The decision to agree to ECT is theirs; the duty to inform, their physician’s.

Conclusions

Evaluation and re-evaluation of ECT’s risks and benefits by SURE, NICE and the Royal College of Psychiatrists, and the growing recognition of the extent and importance of research by and involving people who have experienced ECT, as well as increased interest in qualitative data, should lead to improvement in both patient care and research. In light of alarming findings that 50% of patients report receiving inadequate warnings of the potential side- effects of ECT, informed consent practices need to be revised. In particular, prospective patients should be warned of the significant risk of permanent amnesia and the possibility of permanent memory and cognitive disability. Research to adequately assess the nature and longevity of these effects should be undertaken, ‘incorporating patients’ perspectives on the impact of ECT into future RCTs’ (Greenhalgh et al, 2005: p. 78). By all accounts this is long overdue.

Declaration of interest
None.

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Philpot, M., Collins, C., Trivedi, P., et al (2004) Eliciting users’ views of ECT in two mental health trusts with a user-designed questionnaire. Journal of Mental Health, 13, 403- 413.

Rami-Gonzalez, L., Bernardo, M., Beget, T., et al (2001) Subtypes of memory dysfunction associated with electroconvulsive therapy Characteristics and neurobiological bases involved. Journal of ECT, 17,129-135.

Rami-Gonzalez, L., Salamero, M., Beget, T., et al (2003) Pattern of cognitive dysfunction in depressive patients during maintenance electroconvulsive therapy. Psychological Medicine,
33,345-350.

Reitan, R. M. & Wolfson, D. (1993) The Halstead-Reitan Neuropsychological Test Battery: Theory and Clinical Application (2nd edn). Tucson, AZ: Neuropsychology Press.

Rey, A. (1964) L’examen clinique en psychologie. Paris: Presses Universitaires de France.

Rose, D., Fleischmann, P., Wykes, T., et al (2003) Patients’ perspectives on electroconvulsive therapy: systematic review. BMJ, 326,1363-1367.

Rose, D., Wykes, T., Bindman, J., et al (2005) Information, consent and perceived coercion: patients’ perspectives on electro- convulsive therapy. British Journal of Psychiatry, 186, 54-59.

Royal College of Psychiatrists (2005) The ECT Handbook (2nd edn) (Council Report CR128). London: Royal College of Psychiatrists.

Sackeim, H. A. (1986) Acute cognitive side effects of ECT. Psychopharmacology Bulletin, 22,482-484.

Sackeim, H. A. (2000) Memory loss and ECT: from polarization to reconciliation. Journal of ECT, 16, 87-96.

Sackeim, H. A., Devanand, D. P. & Prudic, J. (1993) Effects of stimulus intensity and electrode placement on the efficacy and cognitive effects of electroconvulsive therapy. New England Journal of Medicine, 328, 839-846.

Sackeim, H. A., Prudic, J. & Devanand, D. P. (2000) A prospective, randomized double-blind comparison of bilateral and right unilateral ECT at different stimulus intensities. Archives of General Psychiatry, 57, 425- 434.

Schulze-Rauschenbach, S. C., Harms, U., Schlaepfer, T. B., et al (2005) Distinctive neurocognitive effects of repetitive transcranial magnetic stimulation and electroconvulsive therapy in major depression. British Journal of Psychiatry, 186, 410-416.

Scott, A. I. F. (2005) College guidelines on electroconvulsive therapy: an update for prescribers. Advances in Psychiatric Treatment, 11, 150-156.

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Sivan, A. B. (1992) Benton Visual Retention Test (5th edn). San Antonio, TX: Psychological Corporation.

Squire, L. R. & Chace, P. M. (1975) Memory functions six to nine months after electroconvulsive therapy. Archives of General Psychiatry, 32, 1557-1564.

Squire, L. R. & Slater, P. C. (1983) Electroconvulsive therapy and complaints of memory dysfunction: a prospective three-year follow-up study. British Journal of Psychiatry, 142, 1-8.

Squire, L. R. & Zouzounis, J. A. (1988) Self-ratings of memory dysfunction: different findings in depression and amnesia. Journal of Clinical and Experimental Neuropsychology, 10, 727-738.

Squire, L. R., Wetzel, C. D. & Slater, P. C. (1979) Memory complaints after electroconvulsive therapy: assessment with a new self-rating instrument. Biological Psychiatry, 14, 791-801.

Stoudemire, A., Hill, C. D., Morris, R., et al (1993) Long-term affective and cognitive outcomes in depressed older adults. American Journal of Psychiatry, 148, 1336-1340.

Taylor, J. R., Kuhlengel, B. G. & Dean, R. 5. (1985) ECT, blood pressure changes and neuropsychological deficits. British Journal of Psychiatry, 147, 36-38.

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Wechsler, D. (1997) Wechsler Adult Intelligence Scale III. San Antonio, CA: Psychological Corporation.

Weiner, R. D., Rogers, H. J., Davidson, J. R., et al (1986) Effects of stimulus parameters on cognitive side effects. Annals of the New York Academy of Sciences, 462, 315-325.

Zervas, I. M. & Jandorf, L. (1993) The Randt memory test in electroconvulsive therapy: relation to illness and treatment parameters. Convulsive Therapy, 9, 28-38.

—

For a commentary on this article see pp. 237-238, this issue.

Harold Robertson (148 Beach 94th St, Suite 6, 3rd Fl., Queens, NY 11693, USA. Email: robertson.harold@gmail.com) is the director of a not-for-profit charitable foundation in New York focusing on the underserved patient population. His interest in psychiatric research, in particular research into the use of electroconvulsive therapy, has brought him into contact with others with similar interests across the globe for the past 20 years. Robin Pryor is a psychologist who has held a private practice in New York, NY, for 30 years. His particular interests are the history of psychiatry and first-person narratives of mental health service users. He writes and lectures on these topics.

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CBS News
July 30, 2006

In Connection With Its Actions As It Reviewed Safety of Vioxx

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By LINDA A. JOHNSON, AP Business Writer
July 30, 2006

For eight months during his infancy, Sean Van Duyn gagged, retched and vomited daily. Now 6, the Winter Haven, Fla., boy still can’t eat or drink by mouth, instead being fed by a permanent tube in his belly.

Beset by multiple medical problems in his first months, the boy had to have a breathing tube inserted through a hole cut in his neck. The gagging began and continued until his mother, Susan, discovered the tube was misshaped at the end and had been poking the back of his throat the whole time. The tube was replaced, but by then Sean’s developing brain was programmed not to swallow; he still cannot.

The family alleged the injury occurred because the plastic breathing tube’s tip had been bent during “reprocessing” — cleaning and heat sterilization — done at an Orlando hospital even though the tube was labeled for single use only. They won a confidential settlement from the hospital.

The case has fueled the debate over the safety of reusing surgical blades, forceps and other medical devices. The practice was routine until a couple decades ago, when stronger plastics enabled manufacturers to start making devices designed for single use to cut costs and prevent infection spread in the era of AIDS.

Then hospitals, and eventually specialized companies, started “reprocessing” single-use devices, cutting device costs by about half — without patients’ knowledge.

Federal regulators say reprocessing is safe, but original device manufacturers say they can’t guarantee recycled products will work correctly — and that they are wrongly blamed for malfunctions and patient harm caused by reprocessing.

A federal law taking effect Tuesday, requiring reprocessors to put their company name on recycled devices as well as the packaging, could help determine who’s at fault when problems occur. For devices too small to mark, detachable stickers could be transferred to the patient’s chart.

“That’s like a ‘Sue Me!’ sticker,” and may not be used much, said Josephine Torrente, a lawyer and biomedical engineer who consults for device manufacturers.

Dan Vukelich, executive director of the Association of Medical Device Reprocessors, argues reprocessed products are totally safe because each item is inspected before being shipped.

The device makers and their trade group have been lobbying legislators in several states for bills that protect their interests — and patients. The battle has a big — and fast-growing — financial stake for both sides. Device makers saw combined revenues jump from $48 billion in 2001 to $71 billion last year; reprocessors went from a combined $20 million in 2000 to $87 million in 2004.

Johnson & Johnson subsidiary Ethicon Endo-Surgery is suing the biggest reprocessor, Ascent Healthcare Solutions, for trademark infringement over reprocessing its single-use devices.

“It is impossible to reuse them,” said Robert O’Holla, J&J’s head of regulatory affairs for medical devices, because they are not designed to be taken apart for cleaning. Yet J&J gets complaints from customers about problems with devices showing excessive wear or bleach on them — signs of reprocessing.

Ascent Healthcare’s regulatory chief, Don Selvey, said only about 2 percent of medical devices — a category that ranges from MRI machines to reading glasses — are now reprocessed. He said his company’s processes reduce chances of “viable organisms” surviving on devices to one in one million.

Reprocessed devices are soaked in sterilizing solutions, disassembled, blasted clean with a fine powder, reassembled and inspected, then packaged, sterilized and resealed. On average, they’re reused three to six times.

“It is as safe and effective as a new device if they meet our requirements,” said Larry Spears, compliance chief for medical devices at the Food and Drug Administration.

Since early 2004, when reports of problems with medical devices were first required to note if they had been reprocessed, the FDA has received 13 reports of patient deaths and 421 other trouble reports, including 130 involving serious patient harm, although some may be duplicate reports.

Reprocessors say they must meet stringent FDA standards after first proving they can safely clean and sterilize each type of device. But the manufacturers main trade group, the Advanced Medical Technology Association, notes about half of the reprocessors’ applications for reprocessing of individual devices were rejected by FDA, a sign of the difficulty of properly cleaning complex devices.

Rep. Tom Davis, a Virginia Republican who chairs the House Government Reform Committee, said Friday he plans a fall committee hearing to examine the issue.

“It is unclear to us at this time whether FDA is able to accurately track how often something goes wrong because a device meant to be used once was instead reused,” Davis wrote in a statement.

Congress also has asked its investigative arm, the Government Accountability Office, to update a June 2000 report which concluded more oversight is needed. GAO is unsure when it will begin investigating.

Ken Hanover, CEO of the seven-hospital Health Alliance of Greater Cincinnati, said his hospitals have used reprocessed devices for about eight years without a problem.

“There’s far more risk of medication errors in a hospital than of a problem arising with a reprocessed device,” he said, adding that his hospitals “probably” would honor patient requests to have only new devices used on them.

Children’s National Medical Center in Washington, on the other hand, doesn’t use reprocessed devices, said surgeon in chief Dr. Kurt Newman.

“We want to use the safest and most sterile equipment,” he said.

University of Pennsylvania bioethicist Arthur Caplan has “qualms” about the practice, particularly because patients don’t give informed consent — required when deviating from the standard of care raises safety or efficacy concerns.

“I just think people ought to know what’s going on,” Caplan said.

Susan Van Duyn, Sean’s mother, agreed.

“If anybody can learn from the tragedies with Sean, it’s worth telling” his story, she said.

Association of Medical Device Reprocessors - click on the link that says please help them fight state regs…one of their points of upset involves the proposal to have to give INFORMED CONSENT to patients.

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This was a poster session presented at the annual NIMH Conference by Linda Andre and Juli Lawrence. Note: graphics are clickable for larger views.

———————-

The contribution of ECT survivors to research on the permanent effects of ECT on memory, memory ability and cognition

Authors:

Linda Andre
Juli Lawrence

2002

Statement of the Problem:

Evidence from ECT survivors has been dismissed as “anecdotal.”

Such evidence exists in many forums: in the popular press, in literature, in public testimony before legislatures, on the internet, in the archives of the Food and Drug Administration—but almost never in the published medical literature. Thus, this evidence has been almost entirely ignored by paid professional ECT researchers.

The discounting of the writings and testimony of ECT survivors has led to a “knowledge gap” in ECT research. The enormous body of knowledge of those with direct knowledge of the nature and extent of ECT’s permanent effects has been discounted by professional researchers. Professionals have attempted to study these effects without input from those directly affected. They have not been successful.

In an attempt to close this knowledge gap, survivor researchers have designed and instrumented our own research projects to investigate the permanent effects of ECT on memory, memory ability, and cognition.

There is a great disparity between the results obtained by professionals and those obtained by survivors.

Method:

We examine the dominant existing professional published research in comparison with four survivor-designed studies and attempt to account for the disparities.

Though we surveyed research from the 1940s to the present, we focus here on NIMH-funded research of the past 25 years. Although some studies from the 1940s and 50s stand as unsurpassed examples of sound research—especially the famous Janis study which has prompted calls for replication to this day—most of the earlier studies are characterized by the same methods, assumptions, and flaws as the later work.

Survey of the professional literature:

There have been only two major NIMH grants to study memory.
MH24600: Memory as Affected by Disease, Injury, and ECT
Principal Investigator: Larry Squire

This grant was not primarily or exclusively designed to study the effects of ECT; the topic of study is memory loss in general.

• Used a self-designed instrument, the Squire Memory Questionnaire, designed to distinguish the effects of depression on memory and cognition from the effects of ECT. It was not designed to investigate the permanent effects on ECT on memory and cognition by comparing individuals who had ECT with their own baselines or with normal matched controls. Also, the questionnaire measures multiple aspects of cognition, not only memory or memory ability.

• Used low sensitivity instruments to assess memory ability (i.e., word lists remembered over a very short interval; remembering names of TV shows)

• Findings and conclusions often contradictory.

• A study that followed patients for six to nine months found the majority reported impaired memory ability due to ECT. (Squire and Chace, 1975)

• A study that followed patients for three years found that the majority (58%) reported impaired memory ability due to ECT. Patients also reported an average eight month period of amnesia. (Squire and Slater, 1983)

“Certain empirical questions about ECT that seem at first glance rather simple to answer by experiment are still widely debated. Does ECT permanently impair memory?” (1986)

“Information about recent events can be lost for a long time, possibly permanently, after ECT.” (1986)

“One way of understanding how such complaints could occur long after ECT is to suppose that they are based on the experience of amnesia initially associated with ECT.”

“There is no good evidence that new learning ability is still deficient six months after treatment.” (1986 Consensus)

“The possibility cannot be ruled out that more sensitive testing methods will some day reveal a greater degree of permanent memory loss.”

MH35636: Affective and Cognitive Consequences of ECT
Principal investigator: Harold Sackeim, PhD

• First awarded in 1981; renewed through 2010; funded approximately $300,000 per year for a total of more than six million dollars

• Principal investigator’s longterm financial and career conflict of interest make this work scientifically invalid.

• Beginning around 1982, Sackeim began working for ECT device manufacturer Mecta as a consultant, designing their devices including the SR-1 and SR-2. He also received grant money directly from Mecta. His financial interest in Mecta has never been disclosed to NIMH as required by federal law.

• Instead of studying memory and cognition directly, the work has focused on a comparison of different ECT techniques.
• Most of these studies follow patients no longer than two months. (This research team claims that all patients are followed up at six months and one year, but the results of these followups aren’t published.)

• Amnesia is assessed using a self-designed, unvalidated instrument, the Autobiographical Memory Inventory, designed without input from survivors. Survivor researchers estimate that at least 60% of the items are insensitive to ECT’s stereotypical effects (for example, they measure very old, overlearned information which is almost never forgotten after ECT).

• Cognition is assessed by gross instruments such as the MMSE. Memory ability is assessed by simple tests such as paired words. (This research team claims that more extensive neuropsychological testing—some of which would be relevant to ECT’s effects—is done on all patients before and after ECT, but the results of these tests have not been published.)

• Much of the grant has been spent selectively reviewing existing research rather than doing experiments. For example, rather than directly design an experiment to test whether ECT causes brain damage, the grantees chose to write a review of some of the existing experiments.

CONCLUSIONS:

After more than 20 years and more than ten million dollars spent on one grant alone, basic research on the permanent effects of ECT on memory, memory ability, and cognition is lacking. By the principal investigator’s own admission, there is no data and there are no answers to the most basic questions about ECT’s effects on memory.

“Prospective patients, family members, and the public often want to know the frequency with which patients report substantial memory impairment following ECT. While we believe that such reports are infrequent, there is little objective evidence to support this judgment or even to broadly estimate base rates.” editorial

“There is no evidence that ECT results in impairments of executive functions (e.g. the capacity to shift mental sets), abstract reasoning, creativity, semantic memory, implicit memory, or skill acquisition and retention.” APA

“No study has documented anterograde amnestic effects of ECT more than a few weeks following the ECT course.” APA

“A very rare number of patients may experience marked retrograde amnesia as a result of ECT. There is no firm estimate on this incidence, but my estimate would be on the order of 1 in 500 patients.” (statement—May)

“All of the available information, from scores of studies, indicates that this deficit (anterograde memory loss) disappears within days to a few weeks following the end of ECT.”(statement—May)

“I’ve never seen a case where there has been permanent effect of ECT on anterograde amnesia. And I invite anyone in the country who believes ECT’s had a deleterious effect on their cognition to come in for evaluation.” (May testimony)

Survey of the survivor literature:

Because of the enormous gaps in ECT research, survivors have undertaken research projects on their own to reflect the variety of experiences. The results of these studies widely challenge the results of the professional literature.

The following is a representative, but not exhaustive, listing of survivor-designed and implemented research.

Committee for Truth in Psychiatry ECT Survey, 1990

52 survivors who reported that they had experienced permanent amnesia and reported that they had not been warned about the adverse effects of ECT were asked about the nature of these effects, using a questionnaire adapted from a standard form used to assess brain injury. They were asked about thirteen common symptoms of brain injury, and asked whether they experienced each in the acute period (the first year after ECT) and in the long term.

All respondents indicated suffering from at least some of these symptoms since ECT, both short-term and long-term. Half of the respondents checked nearly all items in both time periods:

• general loss of memory ability;
• forgetfulness or absentmindedness
• language impairment (not being able to think of a word, or forgetting what one intended to say)
• difficulty in reading comprehension
• not “getting the point” of jokes, stories, movies, etc.
• forgetting new information abnormally rapidly
• impaired sense of direction
• difficulty concentrating
• difficulty with spatial relations
• loss of manual skill
• other loss of familiar skills

The average number of years since ECT was 23. The average age at ECT was 24.

They were then asked about the degree to which they had been able to compensate for these deficits, and whether they found them disabling.

Only one-fourth of the respondents felt they had been able to compensate. They further reported that it had taken them anywhere from 8 to 43 years to reach the point where they were able to compensate for their deficits..

Two-thirds were unemployed, reporting that they had been employed prior to ECT and unemployed as a result of it.

90% said they still needed help in coping with enduring cognitive deficits.

“I think that the residual effects from ECT certainly slowed my ability to do the thinking, concentration, and memory necessary to do my school work…and thus added years to my achieving graduation from college.”

“There was no acknowledgment of any damage so no help was offered.”

“Neuropsychological evaluation showed low IQ, cognitive difficulties”

“I’m OK with multiple choice tests but can’t remember enough to do essays.”

“Retired on Disability, though an associate professor with lifetime tenure. Was doing PhD in Physics.”

“Before ECT I knew my way around town as well as I knew my way around my own house. Now my sense of direction is horrible. I’m always getting lost.”

“43 years to get back to almost as good as before.”

“I am a great deal brighter than average—so professionals do not believe I suffer any losses from ECT. I was not tested before ECT, only after!”

VOICES, 1996

Questionnaires were distributed via online newsgroups and email lists of psychiatric consumer/survivors. 41 respondents participated in the study. 83 percent reported feeling their long-term memory had been affected. This ranged from loss of certain events in their lives, to the inability to remember family members, and in some cases, up to 20 years of memories were erased. Only 17% felt that their long-term memory had not been adversely affected.

“The worst thing that ever happened to me…”
“ECT destroyed my family…”
“Doctor claimed memory problems would vanish in two weeks…”

Of females, 82.6% said long-term memory was affected, and among males, 83.3% reported problems.

“I can’t remember my 20-year Marine Corps career…or daughter’s birth or childhood…”

Short-term memory appears to have been affected slightly less, or the effects were temporary. 63.4% reported problems with short-term memory loss. 12% said they had no problems at all with short-term memory loss. And 22% said that short-term memory loss was either temporary or minor.

“I couldn’t remember people’s names, but it gradually came back…with some prompting…”

Half of all respondents reported that they were given no information about ECT and its effects, other than to be told it was effective. The other half were given information in the way of video tapes, pamphlets, books, and detailed discussions with their physician or nurse. Of those, however, several reported that they wish they had been given more accurate information concerning memory loss and other adverse effects.

“I did have detailed discussions with my doctors before the treatment, but I just couldn’t realize how bad the memory loss was going to be. If I had, I’m not sure I would have taken the treatments…”

ECT Anonymous, 1999

ECT Anonymous, located in the United Kingdom, surveyed 200 ECT survivors. 82 percent of respondents reported a loss of past memories, ranging from slightly (8 percent), moderately (33 percent) and severely (41 percent). 84 percent said they had impaired present memory ability, and 85 percent reported difficulties with concentration after having ECT.

MIND, 2001

In early 2001, the UK mental health charity MIND sent out over 6,000 copies of its detailed questionnaire regarding ECT use. 418 replies were received.

Key findings:

• 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.
• 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.
• 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.

“If I had known I had the right to refuse I would have done so. My understanding was that I had no choice in the matter and that they could do it by force.”

“Was told by consultant ‘best thing since sliced bread’, ‘be well in no time’. When went wrong, ‘this was the first time this had happened’.”

“Possible side effects were downplayed and only lightly touched upon.”

“I was given no information at all”

Published case studies

The individual case study is an important and necessary method of collecting evidence, since it allows the nature and extent of amnesia, memory disability, and memory loss to be described in detail impossible to obtain in-group studies. Consistency in individual case studies illustrates that ECT’s permanent effects have not changed over the years.

As Empty As Eve, by Berton Roueche; first published in the New Yorker, September 9, 1974; reprinted in The Medical Detectives, 1981

“There weren’t just gaps in my memory. There were oceans and oceans of blankness. And yet there seemed to be kind of a pattern. My childhood recollections were as strong as ever. The fog of amnesia increased as I came forward in time. The events of the past several years were the blurriest and the blankest. Another area that didn’t seem to be affected was ingrained habits—repetitive acts and procedures. I mean, I hadn’t lost my command of the English language. I still knew the multiplication tables…But worst of all my problems was that I couldn’t seem to retain. I couldn’t hang on to my relearning. Or only a part of it. The rest kept sliding away again.”

Electroconvulsive Therapy and Memory Loss: A Personal Journey, by Anne Donahue; The Journal of ECT, June 2000.

“My long-term memory deficits far exceed anything my doctors anticipated, I was advised about, or that are validated by research. To the contrary, either I am one in a thousand, a complete anomaly, to be able to document memory loss still remaining after 3 years and extending as far back as occurrences eight to nine years ago, or the profession in general, after all these years of treatment with ECT, has still failed to identify and come to terms with the true potential risks.”

Further evidence for permanent memory and cognitive impairment is found in the neuropsychological evaluations (standardized batteries of tests for brain damage, taking place over two or more days) obtained by individual survivors at their own expense; many of these are collected in the archives of the Food and Drug Administration, Docket #82P-0316.

SUMMARY of survivor findings:

• Amnesia (retrograde memory loss) occurs in a majority of ECT survivors. Commonly, the loss encompasses years prior to ECT.
• Memory disability (anterograde memory loss) is common and does not resolve after ECT.
• When tested long after ECT, survivors experience cognitive deficits.
• Each survivor has her pre-ECT self as a perfectly matched control subject, eliminating confusion as to etiology of deficits.
• More research is needed using extensive batteries of neuropsychological tests such as those used to detect brain damage. From the preliminary data gathered by survivors, a characteristic pattern of ECT damage has emerged. While survivors may do well on simple tests such as paired words or the Mini Mental Status Exam, more comprehensive standard neuropsychological batteries reveal deficits in higher mental functions such as flexibility, shifting cognitive set, abstract and analytical thinking, and executive function. Loss of measured general intelligence (IQ) tends to be highly significant—30-40 points.
• Survivors have absolutely no difficulty distinguishing normal memory failures from those caused by ECT. ECT amnesia and memory disability has little in common with normal memory fallibility, age-related disability, or problems associated with mental illness.

Discussion

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Ontario Electroshock (ECT) Statistics 2000-2002
(second rough draft)

compiled by Don Weitz

source: Ministry of Health and Long-Term Care, Government of Ontario
note: These shock statistics are the most recently available a through a
Freedom of Information application-request.  Outpatient shock figures for
2001-2002 are not yet available, and outpatient figures by gender for
2000-2001 are also not available.  Per cents are rounded off to the nearest
whole number.  If these statistics are cited or published, please indicate
they are approximate and incomplete. I calculated all totals and per cents
by gender and age from the raw data. My sincere thanks and appreciation to
Bill Ng in the Ministry for his assistance.

2001-2002
(figures bsed on fiscal year April 1 - March 31)

ECTs
Inpatient 11,060
Outpatient NA
Grand Total 11,060

Persons (cases)
Inpatients 1, 314
Outpatients  NA
Grand Total 1,314

Total Avg ECTs/Patient = 8

Women
ECTs 7,514 - 68%
Persons (cases) 889 - 68%

Men
ECTs  3,546 - 32%
Persons (cases) 425 - 32%

Women 65+ years old
ECTs 2,392 - 72%
Persons (cases) 295 - 74%

Men 65+ years old
ECTs 932 - 28%
Persons (cases) 105 - 26%

Total 65 years old
ECTs 3,324 - 30% (of Grand Total)
Persons (cases) 400  - 30% (of Grand Total)

2000-2001
(figures based on fiscal year April 1 - March 31)

ECTs
Inpatient     12,253 -  80%
Outpatient    2,974 -  20%
Grand Total 15,227 - 100%

Persons (cases)
Inpatients    1,372 -   80%
Outpatients    342 -   20%
Grand Total  1,714 - 100%

Approximate Total Avg ECTs/Person = 9

Women (based on inpatient figures only)
ECTs 7,903 - 65%
Persons (cases) 910  - 66%

Men (based on inpatient figures only)
ECTs 4,350 - 35%
Persons (cases) 462 - 34%

Women 65+ years old
ECTs 2,683  - 70%
Persons (cases) 306  - 73%

Men 65+ years old
ECTs 1,131 - 30%
Persons (cases) 113 -27%

Total 65+ years old
ECTs 3,814 - 25% (of Grand Total)
Persons (cases) 419 - 24% (of Grand Total)
,

Brief Comment:
These statistics indicate several major points: First, most electroshock
(80%) is administered to inpatients, particularly in general hospitals, and
approximately one-fifth (20%) is administered to outpatients. Second, the
total number of electroshocks has apparently decreased from approximately
15,000 in 2000-2001 to 11,000 in 2001-2002. However, the total figures for
2001-2002 are incomplete because outpatient figures are not yeat available
- when available they should increase the total  ECTs administered to at
least 13,000.
Third, in both years twice as many women as men are administered
electroshock (68% vs 34%).  Fourth, approximately 30% of people
administered electroshock are the elderly , 65 years and older. Fifth,  a
disproportionately large number of elderly women are subjected to
electroshock - approximately 75% of elderly shock patients are women, three
times as many women as men.

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March 31, 2004

Letters Editor
The Toronto Star
fax: 416-869-4322
Email: lettertoed@thestar.ca

Dear Editor:

As hi-risk or unsafe medical devices, I call readers’ attention to
electroshock (”ECT”) machines (”Medical devices called risky,” Mar.31).
Auditor-General Sheila Fraser probably did not specifically mention
electroshock machines in her recent audit report on Health Canada. However,
since 1978 the US government’s Food and Drug Administration (FDA) has
officially classified these hi-risk machines in “Class-III”, its lowest
approval category which indicates unsafe or high-risk. Nevertheless, Health
Canada hasn’t even  bothered classifying these machines, it hasn’t bothered
to evaluate or conduct independent tests of their medical safety. Instead,
it has  routinely relied on the self-serving, biased reports of the
manufacturers (US-based companies Somatics, Mecta). FDA also has refused to
conduct independent medical safety tests, it still relies on manufacturers’
unsubstantiated claims of safety and effectiveness.

In Canada, shock machines are used by hundreds of psychiatrists on
thousands of patients everyday as a so-called “safe, effective and
lifesaving” treatment for “depression”, “bipolar mood disorder” and
“schizophrenia”. Shock machines may be wired to satisfy electrical
engineering standards, but they’ve never been proved medically safe. These
machines deliver an average of 175-200 volts of electricity for 1-2 seconds
during each “treatment”, but they’re capable of delivering as much as 400
volts - at least 2 times the electical energy coming out of your home
electrical outlet! Nevertheless, they’re declared “safe”, “effective”,
even “lifesaving”. Shock machines always cause harm by inflicting brain
damage, permanent memory loss, other intellectual disabilities, and
sometimes death - all scientifically documented facts in the
medical-psychiatric literature for over fifty years.

I personally know of many psychiatric survivors in Canada and the US who
have been permanently traumatized and disabled by “lifesaving” electroshock
and its “safe and effective” engines of destruction. Today the main targets
of electroshock are women and elderly people, especially women over 60,
which means the administration of shock is also sexist and ageist, a form
of elder abuse.

Health Canada claims it’s protecting our health and safety from hi-risk
medical devices. Really? I say prove it - start inspecting these
memory-destroying, brain-disabling machines and publish the reports of your
inspections. These infernal machines should be banned, so should
electroshock.

Don Weitz

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ECT (ELECTRO CONVULSIVE THERAPY): NEED FOR DEBATE
Center for Advocacy in Mental Health

A research center of Bapu Trust, Pune, India

INTRODUCTION

The World Health Report, 2001 of the WHO is the most recent among a line of reports and documents suggesting the tremendous increase in the burden of mental disorders in developing regions. Several researchers (for example Patel, 1999) have underscored the “social determinants model” of mental health, where poor social and economic development is linked with increased risk for mental ill health. The poor and vulnerable groups are seen as being at high risk for common mental disorders (CMD). The research of the last decade on gender and mental health has also shown the greater vulnerability of men and women to substance abuse and depression respectively (Davar, 1999; 2001).

Incommensurate with the emerging epidemiological and social science data bases in mental health today, and the increasing awareness in society about mental disorder, there is a large gap in service provision and quality of care research or advocacy. When it comes to service provision, “cost effectiveness”, “risk benefit analysis”, etc. has led to some questionable arguments and conclusions, because of the lack of public debate. Only partisan views prevail in this area and the debate is polarized between medical professionals and human rights groups in mental health.

Two significant arguments made on the basis of cost effectiveness are the following:

(1) That direct ECT (Electro Convulsive Therapy) is the cheapest and most effective form of treatment (Andrade, 2003a, b; Tharyan, et. al. 1993) and

(2) That anti-depressants are better (cheaper and more effective) than placebo or psychological counseling in the treatment of depression (Patel et al 2003).

Both these arguments boost the prominent bio-medical profile and future of mental health provision in India. With a view to starting a public debate on community alternatives and quality of care in mental health service provision, in this paper, we take a position regarding the recent advocacy promoting the use of direct ECT (i.e. shock treatment without anesthesia), as the cheapest, and most effective form of treatment for mental disorders (Andrade, 2003a, b; Tharyan, et. al. 1993).

We argue that direct ECT is a controversial, hazardous and traumatizing procedure. There is no contemporary evidence base for the use of the procedure. There is an uncommon degree of death, injury, terror and trauma caused by the procedure. And finally, there is a high potential for abusing it as a form of punishment. These factors, we conclude, makes direct ECT an instrument of torture, rather than of treatment. The use of the procedure must be brought within human rights jurisprudence and should be the subject of consumer action and litigation. Regulatory bodies such as the IECs, Medical Research Council and the Psychiatric Society should stop further research on direct ECT.

We do admit that families may have obtained beneficial results from use of the ECT when administered well. However, we agree with Pathare (2003) who writes that people friendly, psychotherapeutic and community-based options must be developed instead of routinely prescribing ECT on the basis of the “poor country” argument. The topic of ECT in general and its relevance in community mental health must be more widely debated.

1. ELECTRO-CONVULSIVE THERAPY (ECT): OUT OF THE CLOSET

Finally, the subject is out of the closet. Shock treatment has always been a taboo subject in India. It has been an esoteric topic discussed in medical forums, but never brought up before for public debate. Recently, in the wake of the Supreme Court approval of the procedure, a prominent psychiatrist has written making a case for direct ECT (Andrade, 2003a, b). This article follows in a line of other articles advocating direct ECT in recent times (Tharyan, et al 1993). This resurgence of direct ECT is risky in mental health service provision in India.

1.1 What is ECT?

In ECT, an electrical current of between 70 to 170 volts is passed for between 0.5 and 1.5 seconds. In direct ECT, the body is thrown into frank epilepsy like seizures. While the patient is conscious in the beginning, he or she is rendered unconscious when the grand mal seizure starts. He is held down physically by staff to prevent fractures and internal injuries. The risk of injury is high. As the procedure is usually given in series, this hazard is experienced again and again. In an ideal text book situation, the procedure is repeated between 6 to 10 times. But continuous dosing of up to 20 times or more is neither unknown nor uncommon in India.

In its “modern” or “modified” form (Modified ECT), text book practice suggests that the patient should not eat or drink for four hours or more before the procedure, to reduce the risk of vomiting and incontinence. Medication may be given to reduce the mouth secretions. Muscle relaxants and anesthesia are given to reduce the overt epileptic / muscular convulsions. The muscle relaxant paralyzes all the muscles of the body, including those of the respiratory system. Anxiety may be caused to the patient due to a sense of suffocation and anesthesia is given to prevent the anxiety. General anesthesia is given intravenously to make the patient unconscious. A “crash cart” is kept nearby, with a variety of life-saving devices and medications, including a defibrillator for kick starting the heart in case of a cardiac arrest. The brain is subjected to seizure activity induced by the electrical current, as it is believed that seizure is the essentially curative. The causal mechanism by which the treatment works is not known. Endocrinological, neurotransmitter and other changes have drawn a blank (Kiloh, et al 1988). It is believed that electricity itself and the seizure activity it produces is the curing element.

To get a picture of the procedure, read below, a full narrative of the experience of modified ECT, reported by doctors in 1988:

“In a generalized seizure (grand mal) the patient loses consciousness immediately and the whole musculature goes into a powerful tonic spasm. The upper limbs are held close to the body with flexion of the wrists and fingers, while the lower limbs extend with inversion of the feet and flexion of the toes. The trunk muscles contract and as the extensor muscles are the more powerful the spine tends to become hyperextended. The respiratory muscles are involved so that respiration ceases. The pupils dilate and become inactive and the eyes are insensitive to touch. There is an increase in heart rate and a rise in both systolic and diastolic blood pressure. If the bladder or bowel are distended at the time of the fit, either or both may be evacuated. The tonic phase usually lasts some 10-30 s followed by a partial, brief relaxation of muscles and a swift return of the spasm. Violent jerks then convulse the body in rapid succession and blood-stained froth may exude from the mouth. The clonic jerkings continue, the intervals between them lengthening, until with a final jerk the clonic stage terminates. At this point a degree of cyanosis is usual but after a brief period of flaccidity breathing is re-established. Often as consciousness begins to return, the patient passes into a deep sleep. If this does not occur the patient shows evidence of confusion with disorientation and may talk in a rambling and disjointed manner sometimes with paraphasias. The patient is likely to be restless and may show excited behaviour perhaps becoming irritable, angry and even violent” (Kiloh, et. al. 1988: p. 189).

1.2 Use of ECT in India

Only a few scattered articles exist in India, mostly published in the official journal of the Indian Psychiatric Society (Indian Journal of Psychiatry), on direct ECT practice. Vahia et al’s early study (1974) reported that in Bombay, 10580 patients out of 12,540 were given direct ECT, a large proportion of the help seeking population. Davar (1999) reviewing secondary literature wrote that, unlike the trend in the west, the use of ECT increased 20-fold in a hospital in Mumbai over a decade. Agarwal, Andrade and Reddy (1992) reported that direct ECT is widely practiced in India as a form of psychiatric treatment. Sharma and Chadda’s (1990) review of hospital facilities also showed that a majority of Indian mental hospitals used direct ECT.

Agarwal and Andrade (1997) studied the attitudes of psychiatrists towards ECT. Of 263 respondents 2.7% strongly objected to the procedure and another 9.5% generally opposed. Another 5.3% had no feelings one way or another. 64.3% were generally favourable, another 12.5% were decidedly favourable. 80% of doctors felt that ECT is the safest, cheapest and most effective form of treatment. A fair majority disagreed that ECT should be used when all else failed. The researchers are “reassured that most felt positive towards ECT”.

Professionals claim that patients are overwhelmingly happy about the effects of ECT (Andrade, 2003b). However, there is no experiential or quantified consumer satisfaction research to back this up. Not surprisingly, patient views on ECT are completely missing in the literature. Experiential accounts of staff or doctors, who have administered the procedure, are not available. There are problems, as we will see, about doing such studies. One study done during the direct ECT era (Verghese, Gupta & Prabhu, 1968) reported that not a single patient out of 36, voluntarily opted for ECT. 26 passively submitted, 8 had apprehensions and 2 strongly objected. This study reported memory loss and marked disorientation following the treatment. This is the only consent study we have found reported in literature.

1.3 SC interest in direct ECT

As readers of EPW may be aware, direct ECT has been placed as a controversial and contested issue before the Supreme Court recently. In the month of August, 2001, 28 people labeled with mental illness perished in a fire tragedy in Ramanathapuram district of Tamil Nadu. The manager of the private shelter in Erwadi had kept them tied to their cots, and so, escape was impossible. The SC took suo moto action and ordered all State Governments to file affidavits on a continuing basis, tabling information on the following topics: the availability of services within the state for mental disorders; whether the Mental Health Act has been implemented; the functioning of the State Mental Health Authority (SMHA); information on religious healing sites and whether mentally ill persons have been kept in chains in any part of the state. The SC appointed an amicus curiae to make recommendations, to field relevant information to the court and to process related petitions that may be filed by the public.

Direct ECT is considered a most contested and controversial procedure in the treatment of mental disorders. Saarthak, an NGO working for persons with mental illness in New Delhi, filed a petition before the SC appealing mainly the following: limitations on physical restraint, an unconditional ban on direct ECT and removal of Section (81.2) of the Mental Health Act, which allows proxy consent for research on persons with mental illness (Writ Petition No. 562/2001 in Saarthak vs. Union of India). While noting that ECT is not the top question for discussion in mental health today, Pathare (2003) has written responding to the Saarthak petition: “This debate [direct vs. modified] is a non-starter: it is accepted the world over that ECT must be administered in a modified form. It has been argued that there is a special case for permitting direct ECT in India because of the lack of facilities for anesthesia and to reduce the costs of treatment. Both these arguments are spurious. ECT is a major procedure and must be carried out under reasonably safe medical conditions” (p. 11). Not many professionals have written in response to the SC intervention.

The response of the state and the judiciary to use of direct ECT has however been ambivalent. In response to the SC orders, many states have reported that direct ECT is being phased out and that as per modern practice, only modified ECT is being used. Some states have given a justification for continuing the use of direct ECT, while also certifying that in their State this practice is not being followed.

In their final judgment, the apex court noted that “ECT remains effective in several major mental disorders”. It is “life saving” and reduces the “risk of suicide”. It further states, notoriously, that direct ECT is safer than modified ECT, as in the latter the risk of use of anesthesia and muscle relaxants is added. Dr. D. Mohan, Psychiatrist, AIIMS advised the apex court, in this instance. The doctor observes a mortality rate of “only 0.03%” in direct ECT, considered clinically insignificant, where as with modified ECT risks of use of anesthesia are to be added. Dr Gauri Devi, erstwhile director of NIMHANS, wrote observing mainly that modified ECT is a non-issue in the treatment of certain mental disorders. But she did not frontally address the issue of direct ECT, the central topic of the Saarthak litigation.

The Supreme Court judgment in this regard raises several questions about the interphase between law and science, the responsibility of medical professionals when giving testimony or scientific evidence, and the collective responsibility of the sciences and the judiciary, towards establishing certain standards of quality health care. The AIIMS professional did not give the background database about direct ECT, or explore the controversy surrounding it, even as a matter of informing the court. Instead of treating this as a quality of care issue and as an investigative matter, he “certified” the procedure as safe, raising the concern about questionable authorisation. The court, on its part, considered the certification given by a couple of psychiatrists as sufficient for making a decision. The Saarthak petition with respect to ECT was not treated with the respect that it deserved by the judiciary or by the professional community.

Around the world, in well-developed legal or policy formulations on involuntary commitments for mental illness, there are provisions and sanctions on the use of (modified) ECT. In India, legal or policy instruments in mental health do not address the procedure of ECT. The Mental Health Act, 1987, is about the institutionalization of persons with mental illness through commitment procedures. The Act was formulated in the context of involuntary commitment of persons labelled with mental illness - a reality in mental health care. Involuntary commitment ill automatically cancels the constitutional right of liberty (Dhanda, 2001) and a further law was required to allow this to happen within the law. However, the Act makes no mention at all of ECT, the top notch instrument of involuntary treatment in mental health care.

A few premier mental health institutions in the country have internal guidelines for the practice of ECT within their institution. At a National workshop on ECT in NIMHANS in 1990, members of the Indian Psychiatric Society recommended the use of modified ECT, in the presence of a qualified anesthetist as the norm for clinical practice. In a meeting of the State Health Secretaries in Bangalore in June, 1999, organized by NIMHANS, modified ECT has been recommended. Regulation of direct ECT has happened in some states of India mainly by High Court interventions. The Bombay High Court recommended against the use of direct ECT way back in 1989, following the Mahajan Committee Recommendations. In Goa too, due to legal advocacy and the proactive role of psychiatrists there, direct ECT has been banned (WP (Civil) No. 257, 1998, Collossa vs. State of Goa in the High Court of Mumbai). In Japan, ECT is used, just as in India, without anesthesia (Minkowitz, 2002), often as a type of punishment for political prisoners. Some countries in the Central and South of America continue to use direct ECT, and international human rights organizations are involved in challenging and reforming the practice.

1.4 Status of Direct ECT in the developed world

If we were to ask, “what is the evidence base which will validate the use of direct ECT” it is difficult to find the answer. It is difficult to find materials on direct ECT in world academic journals of the last 30 years. The only “evidence base” cited is the one or two studies done in India itself, Tharyan, et. al.’s eleven year study (1993) being a very significant one. Indian professionals advocating direct ECT will not find international academic journals, which will publish their articles, and so such articles are published in the obscure Indian Journal of Psychiatry. The world professional community considers the procedure of shock treatment without anesthesia, as barbaric and obsolete.

Many European countries including Holland have phased out even modified ECT, with other countries drastically reducing usage. In the US, use of ECT came down by 46% following consumer action between 1975 and 1980. As awareness about quality care and patient self-determination grows in mental health, every “forced ECT” (i.e. modified ECT where patient has not consented) in any part of the US elicits immediate activism, direct consumer action and patient litigation. In the words of LR Frank, who is called the “Gandhi” of mental health activism in the US, “ECT is a brutal, dehumanizing, memory-destroying, intelligence-lowering, brain-damaging, brain-washing, life threatening technique. ECT robs people of their memories, their personality and their humanity. It is a method for gutting the brain in order to control and punish people who fall or step out of line, and intimate others who are on the verge of doing so” (Frank, 2003: p. 17). Several efforts are on to ban the use of even modified ECT, some of them with partial success. The American Psychiatric Association survey of 1978 showed that only 16% of psychiatrists in the US gave ECT. Consumer groups in mental health maintain “Shock Doctor Rosters”, registering and shaming in public all doctors who indiscriminately prescribe shock treatments, and who do not offer a whole range of other psychotherapeutic opportunities.

This is why Dr Andrade’s recent article (2203a), which has set off a recent controversy in Issues in Medical Ethics, is incredibly astonishing and terribly disappointing. The paper does not even place an exclamation mark in making a case for direct ECT. To make a case for direct ECT in today’s context establishes a fresh, new low for psychiatric ethics in India. So, instead of debating the issue of ‘whether or not ECT at all’, and what other people and user-friendly alternatives we can create in mental health, we are placed in this ridiculous situation of debating direct ECT.

2. IMPACT OF DIRECT ECT

Any discussion on direct ECT, as mentioned above, has to draw from literature that is dated by atleast three decades. It is important to ask, why did the developed world ban the practice? Two major effects of direct ECT led to the phasing out of this procedure in the west– One, relating to the death and injury, and second, relating to the terror and the trauma, caused by the procedure on patients. We discuss these two aspects in this section and the next.

2.1 Injury caused by direct ECT

Direct ECT was invented in curious circumstances. The Italian, Ugo Cerletti, was inspired by the fact that electricity was used in preparing pigs for slaughter in an abattoir. They were rendered unconscious by bilateral placement of electrodes and passing current. Convulsions preceded the loss of consciousness. Following much experimentation on the pigs, he and his colleague, Lucio Bini invented the ECT procedure in 1938 when they first induced an artificial convulsion in a man (Kiloh, et. al., 1988). The man in question was a wandering mentally ill person. In 1940s and 1950s ECT use greatly increased, with experimental research on direct ECT holding sway.

Soon the data on death and injury, which started emerging on direct ECT, was alarming enough to lead to a ban on the procedure. 0.5% to 20% reportedly experienced vertebral fractures in use of direct ECT (Wiseman, pp. 118-119). In the UK, what stopped direct ECT was a well-known case, Bolam v. Friern Barnet Hospital Management Committee, when the patient sustained pelvic fracture. The US army forbade use of ECT during World War II in the early days, but with the increasing role of psychiatrists in the military during this time, it was reintroduced in 1943. The “Young Turks” of the nascent American Psychiatric Society railed against the “promiscuous and indiscriminate use of ECT” in 1947.

Professionals claim (Andrade 2000; 2003a; Tharyan et al 1993) that direct ECT is risk free. Infact, the world experience shows that direct ECT is not safe. As Andrade (2003a) himself mentions, reviewing previous research done in the 40s and 50s, direct ECT is associated with risk of vertebral / thoracic fractures, dislocation of various joints, muscle or ligament tears, cardiac arrhythmias, fluid secretion into the respiratory tract, internal tears, haemorrhages and blood letting, other than fear and anxiety. Risks are greater in males, older subjects, pregnant women and those with osteoporosis. Their own study (Andrade et al 2000) had found that “only 2%” of patients (i.e. 1 out of every 50 patients) experienced “an adverse musculoskeletal event with unmodified ECT”. Tharyan, et al (1993) enlist the risks involved in direct ECT: fractures of the spine, femur, humerus, acetabulum, scapula; dislocations of the arm, jaw and hip; rupture of abdominal muscles; fat embolism; rupture or bleeding of internal organs or viscera and increased apprehension. They do not mention cardiac complications and death, both of which their own study reported.

For “evidence base”, Andrade (2003a) cites the earlier study by Tharyan, et al. (1993), advocating direct ECT. First, a single study is not “an evidence base”. Secondly, this study itself needs careful examination. Andrade writes that in this study, only 12 patients experienced fractures out of a total of 1835 patients receiving 13,597 treatments. In the way the data from this study has been re-presented, it sounds as if a few of the patients walked out of the ECT table with a slight twisting of the middle finger. Andrade fails to mention all the relevant data from this study. The fractures that patients had during this study were thoracic / vertebral fractures involving almost a third of the body vertebrae. The sudden onset of convulsions has a crushing impact on the bones. The neurological disabilities and other orthopaedic consequences of these spinal injuries are unknown. Andrade also fails to mention that in this study, there was one reported death due to cardiac arrest (i.e. one patient out of 1835 died), a good percentage experienced body aches, both local and generalised, and another one percent of the patients had cardiac complications. These data, especially the high rate of spinal injury and mortality rate, which from the patient point of view seem horrific, are not considered “clinically significant” by the authors of this study. Absent, the professional standards for refusing any practice in psychiatry, there does not seem any other way of contesting this data except by throwing up your hands in horror.

Table 1: Complications. Click for larger view.

table.jpg

Source: Kiloh, et. al. (1988: pp.254-266) “True side effects” refers to inevitable events that always accompany ECT; “Complications” refers to infrequent but not rare events accompanying ECT; “risks” refers to unlikely events accompanying ECT; and “complaints” refers to the physical or somatic complain