Annual report on ECT statistics released New Zealand

Friday, 11 August 2006, 11:46 am
Press Release: Ministry of Health 11 August 2006

Annual report on ECT statistics released

A total of 307 people with a serious mental illness received electroconvulsive therapy (ECT) last year, an annual report on the treatment released today by the Ministry of Health shows.

The figure is equivalent to 7.5 people per 100,000 receiving ECT, which is significantly lower than the level recorded in many countries.

About 80 per cent of ECT was given with informed consent, though the actual number is hard to gauge because of coding inconsistencies. Nearly four out of five patients were aged over 40 and about two out of three were women.

ECT has been proven internationally to be an effective treatment for severe depression, with over 8 out of 10 patients responding well to it. It is used when antidepressant medication, psychotherapy or both have been ineffective, when the side effects from the use of medication make ECT the most appropriate treatment option, or other treatments would be too slow.

It is also considered the safest treatment option in cases where depression is accompanied by a physical illness or pregnancy, which renders the use of the usually preferred antidepressants dangerous to the patient or to a developing foetus.

The annual report covering the period from 1 July 2004 to 30 June 2005 also showed that: – 69 per cent of patients given ECT were female

- 85 per cent of patients were European, 6 per cent were Maori, 7 per cent were Pacific Islanders and 2 per cent were Asians

- 79 per cent of patients given ECT were over 40 years old

- 78 per cent of treatments were given with the patient’s consent

A total of 305 people or 7.5 people per 100,000 received the treatment from 1 July 2003 to 30 June 2004.

“ECT has been demonstrated to be a relatively safe and effective treatment, which may actually be lifesaving as serious mental illness is associated with significant mortality,” said Dr Jeremy Skipworth, Deputy Director of Mental Health.

Although the treatment can be given under compulsion under Section 60 of the Mental Health Act, this requires a second opinion from a suitably qualified psychiatrist.

“Some patients are seriously unwell and have no capacity to make an informed decision even though ECT is the best treatment option available,” Dr Skipworth said. “The Mental Health Act provides for this situation.”

“District Health Boards have assured the Ministry of Health that the Mental Health Act was not used to enforce treatment in any case where the patient retained decision making capacity,” he added.

Dr Skipworth said the marked regional variations in the number of ECT treatments could reflect differences amongst boards’ populations.

For example, DHBs with psychogeriatric services may use more ECT than those without these facilities. ECT is more often the treatment of choice for the elderly as prescribing medications is associated with more side effects in this population.

The state of electroconvulsive therapy in Texas. Part I: reported data on 41,660 ECT treatments in 5971 patients.

J Forensic Sci 2000
Nov;45(6):1197-202

Scarano VR, Felthous AR, Early TS

Forensic Psychiatry Services, Baylor College of Medicine, Houston, TX 77030, USA.

The Texas Legislature in 1993 mandated a quarterly reporting requirement for hospitals and physicians performing electroconvulsive therapy (ECT) in the state (United States Government hospitals were excluded). The Texas Department of Mental Health and Mental Retardation (TDMHMR) was designated as the agency responsible for collecting and maintaining the data. This paper reviews the ECT data from 16 quarterly reports (09/01/93 through 08/31/97). The reports contained data on 41,660 ECT treatments in approximately 5971 patients. The results of this study support the proposition that ECT is an extremely safe and effective treatment for those individuals suffering from a serious mental illness. In Texas, ethnic groups other than non-Hispanic Anglo-Americans appear to be underserved in regards to ECT. Those patients without appropriate insurance or adequate personal finds are also underserved as a result of the few county and state hospitals performing ECT and the relatively small number of patients treated with ECT at those hospitals. Recommendations are suggested to improve the quality of the database and in informing the public as to the safety and efficacy of this valuable treatment modality. What, at first, was seen as an unwarranted legislative foray into the practice of medicine, has, in the end, become a source of valuable data supporting the use of ECT as an important treatment modality.

Download full article (pdf 300k) texas.pdf

ECT cognitive effects: unpublished article reveals damning information

Update: The full article has been published in Nature and may be read here in PDF format.

An unpublished article, send by an insider to ect.org, reveals what ECT activists have been saying for years: ECT does cause cognitive damage. The “running title” of the article is “Cognitive Effects of ECT.”

The article is scheduled to be published in Neuropsychopharmacology in January.

4,247 Words
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The Cognitive Effects of Electroconvulsive Therapy in Community Settings

Harold A. Sackeim1,2,3, Joan Prudic1,2, Rice Fuller4, John Keilp2,5, Philip W. Lavori6, and Mark Olfson*,2,7

1 Department of Biological Psychiatry, New York State Psychiatric Institute, New York, NY; 2Department of Psychiatry, College of Physicians and Surgeons, Columbia University, New York, NY; 3 Department of Radiology, College of Physicians and Surgeons, Columbia University, New York, NY; 4Institute for Health, Health Care Policy, and Aging Research, Rutgers University, New Brunswick, NJ; 5Department of Neuroscience, New York State Psychiatric Institute, New York, NY; 6Department of Veterans Affairs Cooperative Studies Program and the Division of Biostatistics, Department of Health Research and Policy, Stanford University, Palo Alto, CA; 7Department of Clinical and Genetic Epidemiology, New York State Psychiatric Institute, New York, NY.

* Correspondence: Dr Harold A. Sackeim, Department of Biological Psychiatry, New York State Psychiatric Institute, 1051 Riverside Drive, New York, NY 10032 USA. Tel: (212) 543-5855, Fax: (212) 543-5854, E-mail: has1@columbia.edu

Running title: Cognitive Effects of ECT

ABSTRACT

Despite ongoing controversy, there has never been a large scale, prospective study of the cognitive effects of electroconvulsive therapy (ECT). We conducted a prospective, naturalistic, longitudinal study of clinical and cognitive outcomes in patients with major depression treated at 7 facilities in the New York City metropolitan area. Of 751 patients referred for ECT with a provisional diagnosis of a depressive disorder, 347 patients were eligible and participated in at least 1 postECT outcome evaluation. The primary outcome measures, Modified Mini- Mental State exam scores, delayed recall scores from the Buschke Selective Reminding Test, and retrograde amnesia scores from the Columbia University Autobiographical Memory Interview–SF (AMI– SF), were evaluated shortly following the ECT course and 6 months later. A substantial number of secondary cognitive measures were also administered. The 7 sites differed significantly in cognitive outcomes both immediately and 6 months following ECT, even when controlling for patient characteristics. Electrical waveform and electrode placement had marked cognitive effects. Sine wave stimulation resulted in pronounced slowing of reaction time, both immediately and 6 months following ECT. Bilateral ECT resulted in more severe and persisting retrograde amnesia than right unilateral ECT. Advancing age, lower premorbid intellectual function, and female gender were associated with greater cognitive deficits. Thus, adverse cognitive effects were detected 6 months following the acute treatment course. Cognitive outcomes varied across treatment facilities and differences in ECT technique largely accounted for these differences. Sine wave stimulation and bilateral electrode placement resulted in more severe and persistent deficits.

Key words: electroconvulsive therapy, major depression, memory, cognitive side effects, amnesia

INTRODUCTION

Electroconvulsive therapy is widely considered the most effective antidepressant treatment, with medication resistance its leading indication (American Psychiatric Association, 2001). However, critics contend that ECT invariably results in substantial and permanent memory loss (Breggin, 1986; Sterling, 2000), with some patients experiencing a dense retrograde amnesia extending back several years (Donahue, 2000; Sackeim, 2000). In contrast, some authorities have argued that, with the introduction of general anesthesia and more efficient electrical waveforms, ECT’s adverse cognitive effects are short-lived, with no persistent effects on memory (Abrams, 2002; Fink, 2004).

Shortly following the ECT course most patients manifest deficits in retaining newly learned information (anterograde amnesia) and recalling events that occurred in the weeks or months preceding the ECT course (retrograde amnesia) (Sackeim, 1992; Squire, 1986). Randomized controlled trials have shown more severe short-term memory deficits with sine wave compared to brief pulse stimulation (Valentine et al, 1968; Weiner et al, 1986), bilateral (BL) compared to right unilateral (RUL) electrode placement (Lancaster et al, 1958; Sackeim et al, 1986; Sackeim et al, 1993; Sackeim et al, 2000), and higher electrical dosage (McCall et al, 2000; Ottosson, 1960; Sackeim et al, 1993). These adverse effects are reduced by the use of RUL ECT with brief or ultrabrief pulse stimulation and electrical dosage titrated to the needs of the individual patient (Sackeim, 2004b). Nonetheless, a minority of US practitioners still use sine wave stimulation, approximately half do not adjust dosage relative to the patient’s seizure threshold, and a majority administer mainly or exclusively BL ECT (Farah and McCall, 1993; Prudic et al, 2004; Prudic et al, 2001). The continued use of treatment techniques associated with more severe short-term cognitive deficits may reflect the beliefs that the cognitive deficits are transient and that older treatment methods provide greater assurance of efficacy (Scott et al, 1992).

Empirical information about ECT’s long-term effects derives mainly from small sample studies conducted in research settings, with follow-up intervals frequently limited to two months or less. By excluding individuals with significant medical and psychiatric co-morbidities, use of optimized forms of ECT, and limited statistical power, these studies could not adequately assess the severity and persistence of long-term deficits. In a sample treated in community settings, we conducted the first large-scale, prospective long-term study of cognitive outcomes following ECT. We characterized the profile of cognitive change immediately and 6 months following completion of ECT, and examined the relationships of treatment technique and patient characteristics to cognitive outcomes. We also determined whether a patient subgroup had especially marked long-term deficits and whether particular forms of ECT administration were overrepresented among these patients.

PATIENTS AND METHODS
Study Sites and Study Participation

The study was conducted at 7 hospitals in the New York City metropolitan area: 2 private psychiatric hospitals, 3 community general hospitals, and 2 hospitals at university medical centers. A clinical outcomes evaluator was assigned to each hospital and collected all research information. The study was conducted by investigators at the New York State Psychiatric Institute (NYSPI), and patients at this facility did not participate. Institutional Review Boards at NYSPI and each of the 7 hospitals approved the study.

Participants were recruited from the inpatients and outpatients referred for ECT with a clinical diagnosis of a depressive disorder. Over a 26-month period, 751 patients were so referred [see Prudic et al (2004) and Figure 1 for details on sample composition]. Study participants met the Diagnostic and Statistical Manual (DSM-IV) criteria for a major depressive episode (unipolar or bipolar) or schizoaffective disorder, depressed, on the basis of the Structured Clinical Interview for DSM-IV Axis I Disorders (SCID-I/P) (First et al, 1996a). Patients were excluded if they received ECT in the past 2 months, scored below 15 on the Mini-Mental State Exam (Folstein et al, 1975), or spoke neither English nor Spanish. Patients were at least 18 years of age and provided informed consent after study procedures had been fully explained.

Study Measures

The primary instrument to assess severity of depressive symptoms was the Hamilton Rating Scale for Depression (HRSD, 24- item) (Hamilton, 1967). Comorbid DSM-IV psychiatric Axis I disorders, including substance abuse or dependence, were determined using a full SCID-I/P interview (First et al, 1996a). Medical comorbidity was assessed with the Cumulative Illness Rating Scale (CIRS) (Miller et al, 1992). At preECT baseline the North American Adult Reading Test (NAART) provided an estimate of premorbid intelligence (Johnstone et al, 1996).

An extensive neuropsychological battery was administered at preECT baseline, within days of completing the ECT course, and at 6-month (24-week) follow-up. A description of the battery and the derived outcome measures are presented in Table 1. The modified Mini-Mental State exam (mMMS) (Stern et al, 1987), a measure of global cognitive status and an expanded version (range 0-57) of the original MMS (Folstein et al, 1975), has shown sensitivity to variation in ECT technique (Sackeim et al, 1993; Sackeim et al, 2000). Psychomotor function was assessed with 3 measures of reaction time (RT): Simple (SRT) (Benton, 1977), Choice (CRT) (Benton and Blackburn, 1957), and Stroop RT (MacLeod, 1991). In each task, median RT for correct response was determined. Although psychomotor function is of practical importance with respect to driving and other motor activities, the impact of ECT on this domain has rarely been examined (Calev et al, 1995; Sackeim, 1992). Attention was assessed with the Stroop (MacLeod, 1991) and the Continuous Performance Test (CPT) (Ballard, 1997; Cornblatt et al, 1984). In severe depression, attention is often impaired, but believed to improve with symptomatic remission (Sternberg and Jarvik, 1976; Zakzanis et al, 1998). However, there is virtually no information on the effects of ECT on these classic attentional measures.

Anterograde and retrograde amnesia are the two deficits most characteristic of ECT. Anterograde learning and memory were assessed with the Complex Figure Test (CFT) (Rey, 1941; Spreen and Strauss, 1998) and the Buschke Selective Reminding Test (BSRT) (Buschke, 1973; Hannay and Levin, 1985). Deficits in delayed recall on the BSRT have been repeatedly documented shortly following ECT, and found to be sensitive to variation in treatment technique (Sackeim et al, 1993; Sackeim et al, 2000). Retrograde amnesia for autobiographical information was measured with the Columbia University Autobiographical Memory Interview– Short Form (AMI-SF) (McElhiney et al, 1997; McElhiney et al, 1995). The original version of the AMI, containing 281 items, has shown strong reliability and validity as a measure of retrograde amnesia, and sensitivity to variation in ECT technique (Lisanby et al, 2000; McElhiney et al, 1995; Sackeim et al, 1993; Sackeim et al, 2000; Sobin et al, 1995).

Three alternate versions of the mMMS, CFT, and BSRT were randomized to testing occasion. The order of the stimuli in each of the computerized tasks was newly randomized at each testing occasion. To allow for comparison of scores across tests and time points, the baseline scores on each test were converted to standardized scores, with a mean of 0 (SD = 1) for the total sample. Scores at the two subsequent assessments were standardized in relation to the distribution of scores at baseline. In all cases, higher standardized scores reflected superior performance. The primary cognitive outcome measures were postECT scores on the AMI-SF, mMMS, and delayed recall on the BSRT. The primary measure at the 6-month follow-up was the AMI-SF score. To identify a subgroup with marked and persistent retrograde amnesia, the most common source of complaint regarding long-term deficits, individuals were identified who following both the postECT and 6-month follow-up assessments had decreases of at least –2.0 SD units or greater on the AMI-SF.

Study Procedures

The outcomes evaluators screened all patients scheduled to start ECT at the facility with a provisional clinical diagnosis of a depressive disorder (N = 751; Figure 1). After obtaining consent and determining eligibility, the evaluator administered the clinical assessment and neuropsychological batteries prior to the first ECT treatment (N = 398).

The intent-to-treat sample included those patients who received at least one treatment and participated in a postECT clinical outcome evaluation (N = 347).

Time limitations and other factors resulted in variable rates of completion of the cognitive tasks, especially at the baseline evaluation. For the baseline assessment, the sample size for the cognitive measures ranged from 242 (CPT) to 347 (mMMS). The ranges were 224 to 346 and 202 to 260 at the postECT and 6-month follow-ups. Thus, 99% of the intent-to-treat sample participated in all or part of the cognitive evaluation at postECT and 75% did so at the 6-month follow-up.

The outcomes evaluator attended ECT treatments and documented the type and doses of medications, type of physiological monitoring, ECT device model, electrical waveform, electrode placement, stimulus dosing strategy, and the specific parameters used for stimulation. The duration of the motor convulsion and, when monitored, the EEG seizure were recorded.

When the treating psychiatrist indicated that the acute ECT course was completed, the patient was scheduled for the postECT assessment. The aim was to test patients between 3 and 7 days after ECT. For the 347 patients in the intent-to-treat sample, the average interval to postECT assessment was 4.37 days (SD = 4.19). At the postECT assessment, the Structured Clinical Interview for DSM-IV Axis II Personality Disorders (SCID-II) was administered to derive DSM-IV diagnoses of personality disorders (First et al, 1996b). All consenting patients were clinically monitored for a period of 24 weeks following the acute ECT course. They were administered the HRSD at 4-week intervals and interviewed regarding the treatments received since last contact. At the 6- month time point, the clinical and neuropsychological evaluations were repeated.

A group of 24 healthy comparison participants, with negative lifetime histories of psychiatric illness, were matched to the patient sample in the distributions of age, gender, and education. The comparison sample completed the same neuropsychological battery at time points corresponding to the assessment periods in patients and each test was scored in standardized units relative to the patient distribution at baseline. Only one measure, d’ or sensitivity on the CPT, showed a practice effect, with signficant improvement from baseline to the postECT time point and stable thereafter. The scoring of the AMI-SF necessarily results in higher scores at baseline than follow-up. The CPT and AMI-SF scores in the patient sample were adjusted for the average change seen in the comparison sample, removing the temporal effects on these two measures.

Average raw scores for the patient sample and average raw and standardized scores for the healthy comparison sample are presented for the baseline evaluation in Table 2. Analyses of covariance (ANCOVAs), with age, gender, and education as covariates, indicated that the healthy comparison sample had superior scores on 9 of 11 of the baseline cognitive measures.

Statistical Methods

The pattern of change in neuropsychological scores was determined for the total sample by conducting paired t-tests contrasting scores at postECT and 6-month follow-up with preECT scores. Differences among the sites in cognitive outcomes were tested with analyses of covariance (ANCOVAs). For each measure, an ANCOVA was conducted on the score at postECT with site (7 levels) as a between-subject term and patient age, estimated premorbid IQ (based on the NAART), gender, HRSD score at time of assessment, number of days intervening between the end of ECT and postECT assessment, and preECT baseline cognitive score as covariates. The ANCOVAs conducted on the neuropsychological measures at the 6-month follow-up used the same model except that the number days since end of ECT was dropped and whether or not patients had received further treatment with ECT in the follow-up period was added as a covariate. The covariates in these models were selected a priori based upon reported associations with postECT cognitive measures (Sackeim et al, 1992; Sobin et al, 1995; Zervas et al, 1993). Other potential covariates screened for inclusion in the analyses were cumulative medical burden (CIRS score), other Axis I diagnosis, Axis II diagnosis, psychotic depression subtype, inpatient vs. outpatient treatment setting, history of previous ECT, length of current depressive episode, and number of previous depressive episodes. The criterion for inclusion of a covariate in the final analyses was a significant association (p < 0.05) with at least two of the primary outcome measures. None of the screened variables met this criterion. Post hoc Tukey-Kramer comparisons identified pair- wise differences among the sites.

The associations between treatment technique and cognitive outcomes were first tested in the subgroup of patients who were treated with only one electrode placement, BL or RUL ECT, during acute phase treatment. Patients treated exclusively with bifrontal (BF) ECT (n = 12), a mixture of BL, RUL, and/or BF ECT (n = 75), or exclusively with RUL ECT with sine wave stimulation (n =2) were dropped from these analyses. The ANCOVAs used the same models as the analyses of site differences, except that the site term was deleted and terms for electrode placement, waveform nested within electrode placement, stimulus dosage, and number of treatments were added. Stimulus dosage was computed as the percentage of maximal device output averaged across all treatments. To corroborate findings, a second set of ANCOVAs was conducted in the intent-to-treat sample. In these analyses, the terms for the number of BF, BL, and RUL treatments (3 factors) replaced the categorical classification of electrode placement and the term for the total number of treatments. To determine whether the site differences were attributable to differences in treatment technique, the last set of analyses was repeated adding site as a between-subject factor. A logistic regression analysis was conducted to determine which treatment technique factors were related to likelihood of manifesting especially marked and persistent retrograde amnesia.

RESULTS

Compared to baseline performance, at the postECT time point the total patient sample showed deficits in the mMMS (t(345) = 8.0, p < 0.0001), SRT (t(281) = 4.2, p < 0.0001), sensitivity (d') on the CPT (t(221) = 7.4, p < 0.0001), learning phase of the BSRT (t(314) = 3.5, p < 0.0001), delayed recall on the BSRT (t(301) = 10.5, p < 0.0001), delayed reproduction on the CFT (t(270) = 7.2, p < 0.0001), and in AMI-SF scores (t(328) = 21.7, p < 0.0001) (Figure 2). At this time point, the Stroop interference effect was reduced (t (264) = 5.3, p < 0.0001). The deficits following ECT were greatest for the measures assessing memory for autobiographical events (AMI-SF), retention of newly learned information (delayed performance on the BSRT and CFT), global cognitive status (mMMS), and simple reaction time (SRT). Compared to the preECT baseline, there was significantly improved performance at the 6-month follow- up on all tasks other than the three reaction time measures (SRT, CRT, and Stroop RT) and sensitivity (d') on the CPT. Furthermore, AMI-SF scores remained markedly below baseline values (t(251) = 21.1, p < 0.0001). There were no significant differences among the 7 hospitals in ANCOVAs conducted on the preECT baseline cognitive measures. In contrast, the 7 hospitals differed in mMMS and AMI-SF scores at both the postECT (mMMS: F(6, 333)= 3.25, p = 0.004; AMI–SF: F(6, 313) = 2.70, p = 0.01) and 6-month follow-up (mMMS: F(6, 248) = 3.43, p = 0.003; AMI–SF: F(6, 240) = 2.26, p = 0.04) time points (Figure 3). In addition, there were significant differences among the hospitals at the postECT assessment for 5 other cognitive measures: CRT (F(6, 244) = 3.34, p = 0.004), Stroop RT (F(6, 252) = 3.02, p = 0.007), CPT sensitivity (d') (F(6, 211) = 2.23, p = 0.04), BSRT learning (F(6, 302) = 2.14, p <0.05), and BSRT delayed recall (F(6, 289) = 2.19, p = 0.04). Across these 7 measures and time points, patients at hospital D consistently showed marked deficits, while patients at hospital G showed the least impairment. The site differences in short- and long-term cognitive outcomes persisted following statistical control for the patient features most strongly associated with the cognitive measures.

When the sample was restricted to patients treated with a uniform electrode placement (N = 258), there were marked effects of specific aspects of ECT practice on short- and long-term cognitive measures. At postECT, stimulus waveform had a significant impact on 4 of the 11 cognitive measures (Table 3, Figure 4). In each case, performance was poorer with sine wave compared to brief pulse stimulation. There were robust effects of sine wave stimulation on all three reaction time measures. At postECT, patients treated with BL or RUL ECT differed significantly in 5 of the 11 cognitive measures (Table 3, Figure 4). BL ECT was associated with greater amnesia than RUL ECT on two of the three primary outcome measures, delayed recall on the BSRT and memory for autobiographical events (AMI–SF). The effects of electrode placement and number of ECT treatments were especially marked on the AMI-SF.

At the 6-month follow-up, patients treated with sine wave stimulation continued to have slower reaction time on the SRT and the Stroop RT tasks (Table 4, Figure 4). At this time point, patients treated with BL ECT had inferior performance to patients treated with RUL ECT on the mMMS, SRT, Stroop effect, learning phase of the BSRT and AMI-SF scores. Greater amnesia for autobiographical events (AMI-SF scores) was significantly correlated with the number of ECT treatments received 6-months earlier.

In the confirmatory analyses, there were significant linear relationships between the number of treatments administered and postECT AMI–SF scores for each of the three electrode placements. However, the slope of the decline in AMI–SF scores with increasing treatment number was substantially greater for BL ECT (F(1, 318) = 53.74, slope = -0.14, SE = 0.02, p < 0.0001) than RUL (F(1, 318) = 7.72, slope = -0.06, SE = 0.02; p = 0.005) or bifrontal ECT (F(1, 318) = 8.01, slope = -0.09, SE = 0.03, p = 0.005). At the 6-month time point, there continued to be a significant relationship between the number of BL ECT treatments and the extent of retrograde amnesia (F (1, 240) = 9.61, df = 1, 240, slope = -0.06, SE = 0.02, p = 0.002), while there were no relationships with the RUL or BF placements. Thus, the magnitude of long-term retrograde amnesia linearly increased with longer courses of BL ECT, but was unrelated to the number of RUL or BF treatments administered. Of the 306 patients classified, 38 (12.4%) patients met the a priori criteria for having marked and persistent retrograde amnesia on the AMI-SF. In the logistic regression analysis, number of BL ECT treatments was the only treatment variable that significantly predicted membership in this subgroup, ?2(1, 296) = 14.7, p = 0.0001. There was also a gender difference, ?2(1, 296) = 5.8, p < 0.02, with a greater preponderance of women (81.6%) compared to men (18.4%) in the persistent deficit group. The analyses of study site effects were repeated now including stimulus waveform and number of treatments with each electrode placement as independent variables. The site effects were no longer significant, with the exception of mMMS scores at the 6-month follow-up. Therefore, the site differences in short- and long-term cognitive outcomes were largely attributable to variation in the type of electrical waveform and electrode placement used in ECT administration. As seen in Tables 3 and 4, several of the covariates had powerful relations with cognitive performance at the postECT and 6- month follow-up time points. For every measure and at both time points baseline scores had strong relationships with subsequent assessments, indicating strong reliability. For 8 of the 11 postECT measures, cognitive performance was positively related to the number of days that elapsed from the end of ECT until the cognitive assessment. It is noteworthy that this effect did not occur with the AMI-SF which assessed retrograde amnesia, the deficit thought to be most persistent. Two patient characteristics, age and the estimate of premorbid IQ, had frequent and strong relationships with cognitive outcomes, especially at the postECT assessment. In each instance, older patients and those with lower estimated intellectual function had more severe deficits. The gender differences, including the AMI-SF scores at the two time points, reflected greater deficits in women than men, and women were disproportionately represented in the group with marked and persistent impairment on the AMI-SF. Women have a substantially lower seizure threshold than men (Sackeim et al, 1987) and electrical dosage was not adjusted in most cases relative to the individual patient's seizure threshold. This pattern of gender differences might reflect the fact that electrical dosage was more markedly suprathreshold in women. Severity of depressive symptoms showed little relationship with the cognitive measures.

At the postECT time point, none of the 11 measures were related to concurrent HRSD scores (Table 4). Findings were also negative for 8 of the 11 measures at the 6-month follow-up. At this time point, lesser severity of depressive symptoms was associated with superior mMMS, delayed BSRT, and AMI-SF scores.

DISCUSSION

This was the first large-scale, prospective study of objective cognitive outcomes of patients treated with ECT. The 7 hospitals differed in the magnitude of deficits at the postECT assessment (Figure 2), with significant differences in 7 of the 11 cognitive measures. At the 6-month time point, differences among the hospitals persisted for the measure of global cognitive status (mMMS) and the primary outcome measure that assessed retrograde amnesia for autobiographical events (AMI-SF). In turn, these differences among the hospitals were largely attributable to differences in ECT technique. The use of sine wave stimulation and the BL electrode placement were both associated with greater short- and long-term deficits. In particular, sine wave stimulation had a marked effect on psychomotor response speed. Patients who received this form of stimulation were slowed at the 6-month assessment relative to patients treated with brief pulse stimulation on 2 of the 3 reaction time measures. In contrast, the long-term effects due to electrode placement were expressed in the magnitude of retrograde amnesia. At both the short- and long-term time points, patients treated with BL ECT had greater amnesia for autobiographical events, and the extent of this amnesia was directly related to the number of BL ECT treatments received.

The demonstration of differences in long-term cognitive outcomes as a function of hospital setting and treatment technique supports the conclusion that some forms of ECT have persistent long- term effects on cognitive performance. However, the findings do not indicate that the treatments with more benign outcomes are free of long-term effects. It is noteworthy, for example, that most cognitive parameters were substantially improved at 6-month follow- up relative to preECT baseline, presumably because of the negative impact of the depressed state on baseline performance. Without evaluating a comparable group that did not receive ECT, it cannot be concluded, however, that the extent of improvement in any group returned to premorbid levels.

The finding that sine wave stimulation resulted in slowed reaction time could have reflected a speed/accuracy trade off, with patients receiving sine wave stimulation sacrificing response speed for accuracy. However, the sine wave and brief pulse groups did not differ in accuracy on any of the reaction time tasks where accuracy could be measured (CRT and Stroop). The fact that relative reaction time deficits were observed at the 6-month follow-up indicates a persistent change in the speed of information processing, motor initiation, or response execution. Randomized controlled studies have not found an advantage for sine wave stimulation with respect to efficacy (Andrade et al, 1988; Carney and Sheffield, 1974; Scott et al, 1992; Valentine et al, 1968; Weiner et al, 1986), and the American Psychiatric Association (2001) indicated that there is no justification for its continued use. The findings here raise the concern that this form of stimulation has deleterious long-term effects on elemental aspects of motor performance or information processing.

BL ECT results in broader and more severe short-term cognitive effects than RUL ECT, particularly with respect to retrograde amnesia. With respect to the AMI-SF scores, BL ECT resulted in greater retrograde amnesia than the other electrode placements and, even at the 6-month time point, this effect was linearly related to the number of BL treatments administered during the acute ECT course. The average decrement in AMI-SF scores in patients treated exclusively with BL ECT was 3.4 and 2.8 times the amount of forgetting seen in the healthy comparison groups at the postECT and 6-month time points, respectively, suggesting that the deficits were substantial. Furthermore, of a variety of treatment technique and patient characteristic variables, only receipt of BL treatment distinguished the group with marked and persistent retrograde amnesia. For decades, BL ECT represented the gold standard with respect to ECT efficacy, and the equivalence of RUL ECT was uncertain (Abrams, 1986). Based on accumulating evidence that the efficacy of RUL ECT is strongly influenced by dosage relative to seizure threshold, highly effective forms of RUL ECT are available (McCall et al, 2000; Sackeim et al, 2000). Indeed, recent work suggests that high dosage RUL ECT delivered with an ultrabrief stimulus maintains efficacy and results in minimal retrograde amnesia even in the period immediately following the ECT course (Sackeim, 2004b). Consequently, there appears to be little justification for the continued first-line use of BL ECT in the treatment of major depression.

While there is a large literature on patient characteristics that predict ECT clinical outcome, little is known about the individual difference factors related to cognitive outcomes (Sobin et al, 1995). Age and premorbid estimate of IQ showed robust associations, especially at the postECT time point. In line with prior reports (Sackeim, 2004a), advancing age was associated with greater deficits. The findings regarding premorbid intelligence are novel. This pattern suggests that individuals with greater premorbid abilities can better compensate for the impact of ECT on cognitive functions (Stern, 2002; Stern et al, 1994)

Among the limitations of this study is the fact that differences among patients in the treatment received were not randomized, but determined by the usual practices of the setting in which they were treated and other uncontrolled factors. Thus, in theory it is possible that the associations in this observational study between cognitive outcomes and site and treatment technique factors were due to the effects of other unmeasured variables that covaried with the settings and forms of ECT administration. This concern is mitigated by three considerations. First, the findings were consistent with the results of many randomized controlled trials demonstrating that short-term cognitive outcomes are negatively impacted by receipt of sine wave stimulation or use of the BL electrode placement. The long-term effects observed in this study reflect a lack of resolution of specific deficits observed in the immediate postECT time period (e.g., retrograde amnesia).

Second, there was evidence that the number of treatments administered, an essential characteristic of dosage, linearly covaried with the extent of long-term retrograde amnesia for autobiographical information for patients treated with BL ECT, but not for patients treated with RUL ECT.

This provided internal support for the claim that choice of electrode placement is critical in determining the severity of long-term deficits. Finally, there was considerable variability within some sites in ECT technique, such as choice of waveform and electrode placement. Site differences in cognitive outcomes dissipated when controlling for treatment technique factors. Regardless, this study provides the first evidence in a large, prospective sample that adverse cognitive effects can persist for an extended period, and that they characterize routine treatment with ECT in community settings.

Acknowledgements

Supported in part by grants R01 MH59069, R01 MH35636, R01 MH61609, and R01 MH05148 from the National Institute of Mental Health, Bethesda, MD.

We thank Dr. Bernard Lerer for his comments on this work, and the staff at the 7 hospitals who facilitated the conduct of this study.

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Tables and Figures-ECT Cognitive Effects


UK ECT stats Jan-March 2002

This statistical bulletin presents information on a survey of patients treated with Electro-Convulsive Therapy, in England, during the three month period January to March 2002.

Key Facts

In the period January to March 2002

  • There were 12,800 administrations of Electro-Convulsive Therapy (ECT) compared to 16,500 in January to March 1999.
  • 2,300 patients received ECT treatment compared to 2,800 in 1999.
  • There were 700 male patients receiving treatment, compared with 1,600 female patients.
  • 47% of female patients and 45% of male patients receiving ECT treatment were aged 65 and over.
  • 73% of ECT patients were not formally detained under the Mental Health Act 1983.
  • Of the 600 patients formally detained while receiving ECT treatment, 60% did not consent to treatment.

ECT use in the UK (pdf, 300K) contains a number of raw stats

Unmodified ECT in India

From the creepy files, this article from an Indian medical journal says that less than half of ECT practitioners use modified ECT. (That is, with anesthesia.)

Indian Journal of Medical Ethics
Jan-Mar2003-11(1) 

Unmodified ECT: ethical issues
Chittaranjan Andrade

Electroconvulsive therapy (ECT) is an important treatment in psychiatry; despite the myth that it is a barbaric and outdated practice (1), it is as relevant today as it was over six decades ago, when it was first introduced. This is because ECT can be life-saving in catatonic, suicidal, or otherwise highly disturbed patients (2); because it is of exceptional benefit in patients with psychotic depression (3); and because it can be both therapeutic and prophylactic in patients who do not respond to antidepressant or antipsychotic drugs (2,4).

During ECT, a small electrical current (0.5-0.8 A) is passed through the brain via electrodes applied to the scalp. The current stimulates the brain and elicits a generalised seizure. This has two elements: the central seizure, manifested as characteristic EEG activity, and the peripheral seizure, or convulsion (2).

The exact mechanism of action of ECT is not known for certain; however, it is definitely known that, in the absence of the central seizure, electrical currents applied to the brain are therapeutically ineffective (5). It has further been established that, as long as the electrical activity in the brain which corresponds to the seizure is allowed to develop, the peripheral seizure is unnecessary (2,5).

Why would psychiatrists want to abolish the peripheral seizure? For one, the convulsion looks frightening to the viewer; this perpetrates the myth that ECT is a barbaric treatment (1). More importantly, research conducted during the early decades of ECT suggested that the convulsion is associated with a 20-40% risk of subclinical compression fractures of middle thoracic vertebrae. The risk was observed to be greater in males, in older subjects, and in those with osteoporosis (6-8). Although such fractures did not appear to be clinically significant (6,9), it was nonetheless considered that morbidity avoided is safety promoted.

While muscle relaxation during ECT had been attempted as early as in 1940, it was not until 1953 that succinylcholine was established as a suitable agent for peripheral muscle relaxation during ECT (2). With the use of succinylcholine, the peripheral seizure is abolished, and the musculoskeletal complications of ECT are minimised. Such administration of a muscle relaxant is known as modification of the ECT procedure.

At this stage, it is worth noting that unmodified ECT is, rarely, associated with other risks, such as dislocation of various joints, minor muscle or ligament tears, cardiac arrhythmias, aspiration of secretions into the respiratory tract, haemorrhage at various sites, and anxiety (10). The prevalence of such complications with unmodified ECT is very low, and precise prevalences are unknown.

The administration of succinylcholine to a conscious patient, immediately before ECT, is frightening because succinylcholine paralyses all voluntary muscles, including those of respiration. It is therefore necessary to administer anaesthesia before ECT; however, the administration of anaesthesia is associated with its own risk, making the presence of an anaesthesiologist necessary.

This is where practitioners of ECT in India find themselves in a bind: one the one hand, their experience is that unmodified ECT is associated with virtually no risks to the patient; on the other hand, they find that anaesthesia cannot be administered safely to many categories of patients, and the presence of an anaesthesiologist cannot always be assured.

It is difficult to recruit anaesthesiologists in many parts of the country because these specialists are few and are monopolised by surgeons. Furthermore, involving anaesthesiologists raises the expenses of ECT from a negligible sum to a high, and (to many) hard-to-afford sum. Some, but not all Indian practitioners therefore continue to administer unmodified ECT. A survey of the medical membership of the Indian psychiatry found that, in 1991, only 44.2% of practitioners who administered ECT always administered modified treatments; however, only 24.2% invariably administered unmodified ECT (11). More recent data are unavailable.

Whether unmodified ECT is ethical or not depends upon a risk- benefit analysis. On the one hand, modified ECT reduces musculoskeletal risks, haemorrhage at various sites, pre-ECT anxiety, and the other but rare adverse effects of unmodified ECT that were listed earlier. On the other hand, modified ECT could be beyond the means (or the reach) of a large segment of Indian society, and introduces the risks associated with anaesthesia.

There is now further evidence upon which decision-making can be based. Tharyan et al (12) observed from a chart review that only 12 patients experienced fractures with unmodified ECT in a series of 1,835 patients who received a total of 13,597 ECT treatments across a span of 11 years. And, we found that only 1 of 50 patients experienced an adverse musculoskeletal event with unmodified ECT in a systematic, radiological investigation of the adverse effects of the procedure (13). It therefore appears prudent to conclude that while modified ECT may be the ideal, there can be situations in which unmodified ECT may be preferable to no ECT. Examples of such situations are those in which ECT is strongly indicated but anaesthesiological facilities are unavailable or unaffordable; in such situations, the expected gains with ECT are likely to far exceed the risks with unmodified treatments.

The stage is now set for a systematic audit of modified as well as unmodified ECT so that better data may be made available upon which more valid decision-making can be based.

References

1. Andrade C, Rao NSK. Medical students’ attitudes towards electroconvulsive therapy. Convulsive Ther 1996; 12: 86-90.

2. Andrade C. Electroconvulsive therapy. In: Bhugra D (ed): Handbook of Psychiatry. New Delhi: Oxford University Press, 2002 (in press).

3. Petrides G, Fink M, Husain MM, Knapp RG, Rush AJ, Mueller M et al. ECT remission rates in psychotic versus nonpsychotic depressed patients: a report from CORE. J ECT 2001; 17: 244-253.

4. Andrade C, Kurinji S. Continuation and maintenance ECT: a review of recent research. J ECT 2002; 18: 149-158.

5. Andrade C. The mechanism of action of ECT. In: Gangadhar BN (Ed.): Proceedings of the National Workshop on ECT: Priorities for Research and Practice in India, pp 107-130. Bangalore: NIMHANS, 1992.

6. Dewald PA, Margolis NM, Weiner H. Vertebral fractures as a complication of electroconvulsive therapy. Journal of the American Medical Association 1954; 154: 981-984.

7. Lingley JR, Robbins LL. Fractures following electroshock therapy. Radiology 1947; 48: 124-128.

8. Meschan I, Scruggs JB Jr, Calhoun JD. Convulsive fractures of dorsal spine following electric-shock therapy. Radiology 1950; 54: 180-185.

9. Polatin P, Linn L. Orthopedic and neurologic follow-up study of vertebral fractures in shock therapy. American Journal of Psychiatry 1949; 105: 824-827.

10. Pitts FN Jr. Medical physiology of ECT. In: Abrams R, Essman WB (eds): Electroconvulsive therapy:  Biological Foundations and Clinical Applications. Lancaster: MTP Press Ltd, 1982, 57-89.

11. Andrade C, Agarwal AK, Reddy MV. The practice of ECT in India. 2. The practical administration of ECT. Indian J Psychiatry 1993; 35: 81-86.

12. Tharyan P, Saju PJ, Datta S, John JK, Kuruvilla K. Physical morbidity with unmodified ECT: a decade of experience. Indian J Psychiatry 1993;35:211-214.

13. Andrade C, Rele K, Sutharshan R, Shah N. Musculoskeletal morbidity with unmodified ECT may be less than earlier believed. Indian J Psychiatry 2000; 42: 156-162.

Chittaranjan Andrade, Additional Professor in Psychopharmacology, National Institute of Mental Health and Neurosciences, Bangalore 560 029. Email:andrade@nimhans.kar.nic.in

Memory and cognitive effects of ECT

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.

box1.jpg

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).

box2.jpg

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.

box3.jpg

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.

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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.

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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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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.

Beyond “anecdotal” evidence: Poster Session at NIMH Conference

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

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Beyond “anecdotal” evidence:

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.

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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.

memorytable.jpg

ltr_cogtable.jpg

Discussion

Published medical literature research:

A small and exclusive playing field: a handful of research teams dominate grant funding.

The only available NIMH grant to investigate memory is tarnished by financial and other conflicts of interest; since this grant is renewed indefinitely, there is little opportunity for researchers outside the ECT industry to obtain funding.

Rarely follows patients as long as six months; almost never longer

Most studies look only at the short-term effects (from during ECT to a few days or weeks after)

Sample sizes very small in general (>50)

Self-designed memory instruments designed without input from survivors, largely insensitive to stereotypical ECT amnesia, memory disability, and cognitive disability

Rarely directly study the effects of ECT on memory, memory ability, and cognition. Instead, studies compare persons who had different types of ECT with each other, rather than with their own baselines or normal controls, resulting in an underestimate of memory/cognitive damage.

Often use no or inappropriate controls

Subjects do not reflect true diversity of ECT patient population: all treated at the same hospital, with the same doctor, at the same time, usually with same machine and technique

Because patients interviewed by their own treating doctor and/or institution, and sometimes while still institutionalized, bias is toward underreporting of adverse effects

Ambiguous inquiries about “memory”, without distinguishing between memory, memory ability, and cognitive abilities

Survivor research:

Researchers unpaid; work done at researcher’s own personal financial expense

Self-designed instruments designed by and for survivors to be sensitive to the deficits we commonly experience

Large sample sizes (<50)

Heterogeneous samples more representative of the ECT population as a whole:

Memory, memory ability, and cognition are studied directly, not as a sidebar to research on optimizing technique

Emphasis on describing discrete cognitive deficits rather than lumping them together with amnesia as "memory"

Patients are their own controls

Mostly very long-term follow-ups: patients who had ECT more than one year---and sometimes ten years or more---previously, thus eliminating replacing speculation with evidence as to whether adverse effects ultimately resolve

Because responding ex-patients are self-selecting, those with more severe adverse affects may be overrepresented

Because researchers are strangers and non-professionals, no incentive to underrreport adverse effects

Ontario ECT statistics 2000-2002

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.

ECT in India

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 complaints associated with ECT. It must be highlighted that with modified ECT, such events are “less likely” but not completely ruled out.

2.2 Death due to ECT
The recent APA Task Force on ECT (2001) notes that contrary to earlier evidence, they have to now acknowledge that mortality rates with ECT (modified) may be as high as 1 in 10,000 patients. Consumers (Frank, 2002) say that mortality rates may be as high as 1% with modified ECT. The mortality rates are probably higher among the elderly. The Task Force report also notes that 1 in 200 will experience irretrievable memory loss, a fact hitherto dismissed as irrelevant by the medical fraternity.

Death in the case of ECT is usually due to cardio-vascular or cerebral-vascular complications, followed by respiratory failure. Shukla (1985), in discussing a case report of death following modified ECT, reviews the mortality data associated with the procedure. Rates between 0.8% and 0.003% have been reported in the western literature. Shukla, finding it a curious fact that deaths have not been reported at all in the Indian professional literature, observes that fatalities are not always publicly reported, particularly in India, but every psychiatrist would have experienced such cases in his practice.

3. DIRECT ECT AS TRAUMA
Leo Frank, an ex-patient subjected to many years of insulin treatment and direct ECT, says, “Why is it that 10v of electricity applied to a political prisoner’s private parts is seen as torture, while 10 or 15 times that amount applied to the brain is called “treatment”?” (2002, p. 19). Many human rights instruments around the world cover the area of the psychiatric system also, as medical coercion and violence, the loss of liberty, political abuse and being incarcerated through misuse of the criminal justice system is high in this health care sector. Involuntary commitment, patient consent, restraint and limits to coercive treatment are covered in human rights jurisprudence because of the fact that this constituency is particularly at risk for loss of constitutional rights. The UN Principles of 1991 also enlists fundamental rights and freedoms of psychiatric patients, and right to quality health care, as such explicit protection is seen as necessary for this vulnerable population. The Council of Europe came out with a White Paper (2000) on “protection of rights” of mentally ill patients and the Convention for Prevention of Torture (2002) also covers involuntary commitment. The ICCPR also covers the rights of institutionalized patients. As the label of mental disorder literally deletes personhood, such human rights safe guards are seen as necessary.

In India, we do not have human rights instruments covering the fundamental rights and freedoms of psychiatric patients. (The Mental Health Act, even though it has a human rights chapter, makes some general statements on such rights such as “no cruelty”). Such instruments are necessary because such patients are the most vulnerable within the community and risk abuse and civil rights violation on a daily basis (Dhanda, 2001).

In developing this instrument, use of direct ECT must be enlisted as a type of torture and as a human rights violation, as found in other world conventions. The European CPT (Convention for the Prevention of Torture) 2002 prohibits the use of direct ECT as a form of torture. The Convention says: “The CPT is particularly concerned when it encounters the administration of ECT in its unmodified form; this method can no longer be considered as acceptable in modern psychiatric practice. ECT should always be administered in a modified form” (Chapter VI, Section 39). One of the reasons cited by the CPT for prohibition on direct ECT is the terror experienced by patients during and after the procedure. The White paper (2000) on the “Protection of the human rights and dignity of people suffering from mental disorder, especially those placed in a psychiatric establishment” drafted by the Working Party of the Steering Committee on Bio Ethics (CDBI), Council of Europe, also prohibits the use of direct ECT.

3.1 Mental effects of direct ECT
Nearly all patients suffer amnesia about the period around which they were given ECT. People given ECT do not remember the experience itself and are not able to report on what it felt like to be given an ECT. In fact, this is a good reason why getting patient experiences of ECT is near impossible: As in trauma, the memories about the experience itself are not available to the conscious mind. Why does memory get wiped out, is a question that all concerned people have been grappling with for a long time. Earlier, professionals used to actually believe that brain damage is curative. We have also heard the clich? that “why would patients want to remember painful memories about mental disorder”, mistakenly suggesting that such memories were wiped out selectively. Advocates against the procedure argue that since it traumatizes the brain, memories are wiped out.

Direct ECT, as a treatment procedure, causes several disruptive psychological effects (Wiseman, 1995). Patient stories show that loss of memory and concentration are common. This affects personal lives (loss of cherished memories), and job performance (technical or mathematical memory, which can be the basic skill for engineers, lawyers or accountants can be lost). Artistic abilities can be lost. Because of this, there is the risk of having to do mechanical unskilled jobs, be unemployed, lose relationships, etc. Confusion, self-doubt due to the loss of memory, uncertainty, increased helplessness, loss of ability to learn and unlearn, lethargy, loss of ability in cognitive subjects will be experienced by many. Suicide and increased violence has also been associated following the use of ECT.

It is common experience in India, too, that patients are terrified of ECT. Within institutional settings, taking someone for ECT is experienced as a punishment by the patients. There is an undercurrent of humilation, shaming and punitive action in the use of the procedure within institutional contexts. Few patients, even those who actually find it beneficial, escape the sense of rage and humiliation that the procedure evokes. As direct ECT is very much like what is crudely shown on bollywood films, the fear and apprehension is quite understandable.

Direct ECT, in the medical narratives, comes across as any other stimulus, which freezes a person in terror, fear and pain. The terror associated with the procedure is a sign of trauma, and not a sign of insanity. As Breggin writes, ECT evokes raw survival fears to the fore. Even the highest experts on ECT (Abrams, et al pp. 130-131) have written that organic brain syndrome to varying degrees is common following all ECTs. ECT may affect all aspects of the brain system including thoughts, feelings and behaviours. EEG abnormalities may not go away for several months or years following ECT, indicating continuing brain seizure activities and possible brain damage. Other psychiatric experts write: “What cannot be denied is that transient forms of brain dysfunction, sometimes of considerable severity, occur with the Cerletti-Bini technique [direct ECT] particularly in elderly patients” (Kiloh, et. al., 1988: p. 190). The most evident effect of ECT on the brain was the vegetativeness of the patient, and reduction in his motor abilities. In fact, psychiatrists of yore believed that temporary brain damage effects the “cure” of mental illness (p. 213).

Direct ECT was described even in doctor’s narratives as somewhat close to lobotomy, the surgical removal of a portion of the frontal brain. Early doctors who gave direct ECT expected “regression”, a state when the patient was meek and submissive, wetting or soiling themselves, whimpering and crying easily, like a child. A writer in the Diseases of the Nervous System wrote, in 1951: “By the end of this intensive course of treatment practically all 52 patients showed profound disturbances. All showed incontinence of urine, and incontinence of feces was not uncommon. Most of them were underactive and did not talk spontaneously. Many failed to respond to questions but a few patients would obey simple requests. They appeared prostrated and apathetic. At the same time, most of them whined, whimpered and cried readily, and some were resistant and petulant in a child like way” (Wiseman, pp.118-119). The suggestion in literature is that ECT affects the limbic system of the brain, the same system that is affected by deep trauma.

In the UK, following the famous case against direct ECT, there was also a general consensus among professionals and policy makers that its unpleasant effects gave more scope for it to be used as a punishing tool, and several such stories did emerge until the 1980s. Case after case indicates that ECT is made as a choice of treatment in the case of “unmanageable” patients. ECT quiets the patients and remits agitation immediately, for unknown reasons. Within institutional contexts, therefore, the risk of abuse of the procedure is high. In India, although there is negligible documentation, direct ECT has been used as a punishment by families in collusion with psychiatrists against errant daughters and given to cure “naxalism” (Ramaswamy, 1999). For many years, the writer has suffered irretrievable memory loss. ECT has been given in India for all and sundry problems, including “curing” homosexuality. The use of direct ECT for dealing with political prisoners in Japan is also known (Minkowitz, 2002).

3.2 Use of sedation to allay fear
The fear associated with direct ECT is equal to the fear caused by any instrument of punishment and torture, and it is not a sign of insanity. It is the prejudicial attitude of professionals towards persons with mental illness, which allows them to interpret every response to their treatment as a symptom warranting further abusive treatment. With this logic, it will never be possible for a patient diagnosed with mental illness, to ever raise a question about the treatment they receive, for all such questions will risk being interpreted as a “psychiatric symptom”. Infact, Peter Breggin (1993), an erstwhile psychiatrist who gave up the profession in disgust over its abusive practices, and joined the mental health consumer movement as a researcher and a social scientist, wrote that the most dangerous impact of ECT was that the patient is no longer in a position to protest the damage done to him (p. 240). This strategy of seeing patient refusal of a particular treatment, as symptomatic behaviour, is evident in Tharyan et al’s study as well, which we discuss below. Such attitudes diminish the self determination of the patient in his or her own care.

In Tharyan et al’s opinion fuelling study, too, a high percentage of patients (7.5%) reported fear and apprehension of the procedure, and 50 patients actually refused the treatment. On ordinary ethical conditions of doing human behavioural research, we assume that such subjects would have been allowed to drop out of the study. How did the researchers proceed with this frightened sample of 150 patients?

Well, they did so, by actually sedating them and getting them to comply. Quoting them in full: “A fifty of them [patients] refused further ECT due to this fear while in the remainder (100 patients) the fear was reduced by sedative premeditation enabling them to complete the course of ECT. In the earlier half of the decade under review, barbiturates, oral diazepam, parenteral haloperidol and even thiopentone were used to allay anxiety; in recent years, this has been effectively managed by pretreatment with 1 to 4 mg of lorazepam given orally”. Further, it was interesting for these authors to observe that those who refused ECT were not among those who were sedated, that is, most of those sedated complied.

Such is the prejudicial approach to mentally ill patients, that refusal of a hazardous and life-threatening procedure is considered as a mere symptom, and further treated with sedatives to obtain patient compliance. We are of course aware of other power situations, such as rape or wife battery, when refusal is treated as consent. Tharyan et al’s study also suggests that it is common practice to sedate patients who refuse ECT. Amazingly, in their list of recommendations, they recommend the use of sedatives to minimize the fear of ECT among the patients. Their political message seems to be that, if people refuse a hazardous treatment, or if they will not participate in research that involves study of such a treatment, then it is okay sedate them. Patient ethics fundamentally rests on the principle of autonomy, which is seriously violated with this approach.

The world data of three decades already exists to rule out the procedure as barbaric. No further research is necessary on direct ECT. And if over six decades of ECT research has come up with little hard data on the causal effects of its beneficence, except the vague claim that electricity itself causes the cure, then perhaps it is time to question the assumption of its value in mental health service provision. Andrade recommends systematic sampling and interviewing of patients who have received ECT, as “dissatisfied patients can be found for all treatments?” (pp. 44-45). This call for quantified survey data on patient experience of direct ECT is against the very basis of human rights jurisprudence, where a single case of violation is indeed representative.

Because of the physical and mental trauma caused by the procedure, patients given direct ECT must be considered as victims of torture and the perpetrators of this form of torture must be brought within human rights jurisprudence. Direct ECT research should not be allowed to happen in future, as this would be a clear human rights violation. Statutory authorities, institutional ethics committees and consumer bodies must ask explanations regarding the recent highly objectionable research done on direct ECT.
4. WHY DIRECT ECT
The main argument used by Tharyan, et al (1993), Andrade (2003) and others is that direct ECT is “cost-effective”. The dogma among professionals is that direct ECT is the cheapest and safest form of treatment for mental disorder, as it does not require medical facilities and an anesthetist. It is argued that in a resource poor setting, we have to compare “existing alternatives”, use the cheapest means available for cure, and not go for the most ideal (modified ECT). If the choice were between no ECT and direct ECT, then direct ECT is considered to be the more “ethical” alternative in the treatment of mental disorders. We question these arguments in this last section.

4.1 ECT is not a cure

Andrade (2003b) argues that:

“From an emotional perspective, a seizure-inducing treatment could certainly seem barbaric. However, if ECT is barbaric or unattractive, so too are cardioversions, abortions, Caesarean sections, radical mastectomies, open heart surgeries, orthopaedic and neurosurgical interventions, and so where does one draw the line?” (p. 44)

It is misleading to compare ECT with major surgery in justifying usage. Surgery intends to cure. But ECT is palliative, not curative. This means that in practice, professionals use it repeatedly as and when they like as, palliative care being an ongoing need, unlike curative care. Infact, relapse rate has been reportedly high in the use of ECT for schizophrenia and patients have to go for ECT “like an addiction”, in the words of someone who has experienced the treatment. Within the span of a week or two, mastectomies or open heart surgeries are not prescribed in series. It would incredibly impoverish families and patients, if this were so. The text book prescribes 6 to 10 sessions of ECT, unlike the case of surgery. If we wish to adopt the surgery metaphor, then, ideally, the procedure would be used as a last resort. However, ECT is used often as the first line of treatment for dealing with mental disorders in India. Over-prescription is the rule rather than the exception. In the cost-effectiveness argument, are such realities of practice taken into account?

Finally, the stout evidence base underlying surgery is simply not comparable to the very weak epistemological foundations of ECT. Mental sciences in general suffer from weak epistemologies (Davar and Bhat, 1995) when compared to the natural sciences. Professionals cannot say how ECT works. Neurotransmitter and endocrinological studies have drawn a blank (Kiloh, et al 1988), and all that can be said is that electricity itself cures.

4.2 Training for direct ECT
Tharyan, et al’s study (1993) reassures the reader that in giving direct ECT, “trained” professionals were used to give direct ECT. What does “training” mean in the context of giving direct ECT? You just need some physically very strong people to tie down the patient in strategic points and to keep the jaw and joint areas from major injury. [If we were to include direct ECT in our community mental health, NGO training or volunteer training programs, what kind of programs will we have to run? Training Programs on "Accident management during ECT", "Bone setting and suturing course for ECT managers", "Martial arts and body techniques for CHWs giving direct ECTs", etc. seem appropriate titles.]

However that may be, in Tharyan et al’s study (1993), the composition of the full “trained team” used to prevent injury were the following: four orderlies, three nurses, two postgraduate trainees and a consultant psychiatrist, that is, a total of 10 “trained” people! If cost-effectiveness is our preferred parameter for “ethically” choosing a particular option, wouldn’t it be just cheaper to hire an anesthetist? It is unrealistic that in the actual settings where direct ECTs are going to be used, for example, the district hospital or the private clinic, there would be so many “trained” people to audit the ECT procedure. The research situation was an ideal situation, unlike the practice situation. Even here, with a full load of 10 people tying down a patient from the convulsions, the reported injury rate was not insignificant.

Another aspect of cost is highlighted by Kiloh, et. al. (1988) (who in general approve of ECT as a sound treatment in some cases). They cite studies of patients wherein, following ECT, the depressive symptoms remitted immediately, but they had to stay in the hospital for a week to clear their “confusion, memory loss, euphoria, lability of mood and affect, and impaired judgement” (p. 251). In the case of direct ECT, we can expect that the costs of injury, illhealth and disability are higher. We wonder if these costs have been factored into the dogma about the cost-effectiveness of direct ECT.
4.3 ECT is lucrative
While we question the faith that direct ECT is cost effective for the patient, we suspect that it is lucrative for the doctor. In the US (Wiseman, 1995; Kiloh et al 1988), ECT research is conducted by very few organizations. Large research, medical foundations and psychiatric learned societies do not fund ECT research. The medical fraternity looks down upon the procedure. The government does not fund ECT research, and it is not often used in the federal, and state hospitals. However, this trend may be changing with the recent American Psychiatric Association’s approval of the procedure.

In India, ECT is lucrative business. It falls within specialist practice. In nearly every city in India, a majority of psychiatrists practice privately and give ECT in their private clinics. In Pune city for example, nearly 90% of psychiatrists are in private practice, with the public mental health system having become literally dysfunctional. They cater mainly to the middle class with fees ranging between 100 rupees to 500 rupees per consultation. A recent survey in western India showed that nearly 80% of private psychiatrists give ECT, costing anywhere between 500 to 1000 rupees per dosage. If we set the dosage at textbook level (i.e. 6 to 10 ECTs), the total cost would be anywhere between 3,000/= to 10,000/= rupees per series. Direct ECT is a money-spinner for many psychiatrists in the business. There are unscrupulous psychiatrists who ask the patient to first take an ECT before even consultation (Bapu workshop, 2002)!

4.4 Policy regulation absent
In India, ECT is given without restriction for anything and everything, often as first line of treatment, for even “curing” homosexuality. Andrade (2003a) writes that ECT is given to catatonic, suicidal, or otherwise “highly disturbed” patients. To say that “highly disturbed” patients can be given ECT allows too much ambiguity and scope for abuse of the procedure. In the direct ECT era, Shukla (1974) recommended use of direct ECT as a solution for passing a nasal tube to catatonic patients who refuse food: “At times it is very difficult to pass a tube even under sedation. I have tried the following in such patients with a 100% success: I give the patient direct ECT. (There are no problems as these patients are usually fasting and their stomach, bowel and bladder are empty). As soon as the convulsions stop and the patient is in a flaccid state, I pass the tube and it goes in very easily” (p. 95).

Policy guidelines and evidence base repeatedly comes up with only one diagnosis where ECT may be tried if other treatments fail- that is in the case of endogenous depression. Some documents do say that in this case, modified ECT can also be tried as first line of treatment, but enlist further conditions, including patient consent, an active audit program in each ECT department. The CPT 2002 also talks about patient consent and ECT audit, including a registry of ECT.

Reviews of research on the use of ECT in the case of schizophrenia upto the mid ’80s, when ECT research was at its peak, shows that
1. It is not possible to be emphatic about the value of ECT in patients diagnosed with schizophrenia
2. ECT and neuroleptic drugs have the same outcomes statistically
3. The relapse rate is high in use of ECT, showing that it probably has short term benefits

On the basis of the review, Kiloh et al (1988) observe that “the question whether the long-term effects of neuroleptic drugs, notably tardive dyskinesia, are more or less disabling than the possible ill effects of long term ECT cannot be answered” (p. 244).

ECT guidelines do not exist in India, making it a huge ethical issue among patients and consumers. Indian psychiatrists recognize the cavalier use of ECT. Agarwal (1990) in his editorial notes remarkable deficiencies in the administration of ECT even in the West, writing, “the situation in India is bound to be more disappointing”. ECT in India is often prescribed in series, without any review, the conditions for safe use and correct use are not specified, the staff giving ECT are often untrained, and physical pre-exam is often not done, as it is felt that ECT is safe for anyone and everyone (“virtually no contradictions”, according to the psychiatric dogma).

Patient consent:
The community mental health program in India (NMHP, 1982) promises to take mental health services to the community. Unfortunately, in most parts of India, it has remained a drug and ECT dispensing service, with minimal understanding or engagement with the community. The advocacy for direct ECT is likely to increase misuse of ECT in private practice and in the community mental health programs. Lack of awareness among communities about this procedure is likely to be harvested by unscrupulous professionals. As people with mental illness are not considered fit to give consent, patient consent is rarely addressed. In many hospitals, patients and their families are only told that they are receiving an “injection”, as it is argued that patients will not understand the procedure. Consent letters, if used at all, are signed on that basis. See, for example, the narrative below.

“In the beginning my husband did not benefit from the medicine, so he had to be given shots. And while giving shots also they take [the patient] with great love and affection, not that they tied and took him. They will lure you and take you. There are two or three employees. Those who try to run, they have to be stern with them. Even for shots? because there is a danger that perhaps they may die? attention has to be paid even to their teeth that they should not dislocate or fall. When shots are administered the teeth is clenched and it clatters? the entire jaw may even come out, so they put a big bandage inside. If it moves, the entire set both can come out in that bandage. They would tell you before hand that you keep either milk or tea ready.”

Quality of care
The research cited in this paper advocating direct ECT was done under ideal treatment conditions. The institutions where the research was conducted (NIMHANS, CMC) were well funded public health institutions, with a promise of high quality care. Adequate staff were allocated for the research. Under ideal conditions, the injury rate is not insignificant, as we have argued above. What can we expect from less than ideal conditions? We give a case study below:

“Meena” was imprisoned in a Maharashtra jail for killing her sister. She suffered from “voices in the head” for several years. After the accident, she was arrested and then taken for treatment. Here we present a portion of her experiences with shock treatment without anesthesia:

“I was totally maddened by this time. The police arrested me and kept me in the lock-up. I felt very remorseful after that. They later took me to a nearby famous hospital. There they gave me shock treatments. 4 shocks they gave me with anaesthesia and three shocks they gave me without anaesthesia. I remember feeling those three shocks while I was awake. I had not fainted, and could feel the shocks. It was extremely painful. They used not to give me any tea in the morning either. I would not allow them to put the cloth in my mouth. It was extremely painful. I suffered an enormous amount. It was the most horrible pain in my head. I don’t remember anything else about the time. I was also very rude with the doctors. The voices in my head stopped after that. I kept feeling remorseful about how I had killed my auntie’s only child. My aunty came to visit me in hospital also. I asked her whether she had told the doctors to give me shocks. She didn’t know anything about it. I was unconscious for 3 days after the shocks. It was very traumatic.”
We have all experienced the mundane pain of needles poking at our elbow because the poorly trained staffer “could not find a vein”. What are the effects of poorly administered direct ECT? The patient is rendered unconscious only when the grand mal seizure starts at a particular electrical threshold. Meena was probably given ECT without anesthesia at infra-threshold, so she did not become unconscious.

4.5 Other guidelines
Recently, in Utah, an ECT Bill passed by the House is being considered by the Senate in which consumer groups have had a large role to play. The proposed bill (www.le.state.ut.us/-2003/htmdoc/hbillhtm/HBO109S1.htm) does the following: It prohibits shock for children under the age of 14. It prohibits shock for individuals who are committed against their will. It prohibits a legal guardian to consent to shock for someone else. It requires a second medical opinion to shock someone over the age of 65. It requires that informed consent mentions that possible side effects of shock may include permanent memory loss, cardiac arrest and death. It requires a reporting system to show how many are shocked every year and if they suffer from any side effects within a certain amount of time. It requires that an autopsy be done if someone dies after shock, and that the autopsy look for brain damage by searching for destroyed small blood vessels. It allows free individuals over the age of 18 to receive shock after they get full informed consent.

The Royal College of Psychiatrists Commission Guidelines give conditions for anesthetic equipment, the ECT machine, staff requirements and treatment protocols. As direct ECT machines are obsolete, such machines would be ruled out by international standards. The FDA considers ECT machines as “Class III” devices, that is “hazardous”.

There is a need to investigate the condition and commerce of existing ECT machines in India, who makes these machines, who approves them, what are the standards for the machines. In UK, an internationally recognized advocate of ECT, Dr Abrams, who wrote the very popular reference book, Electroconvulsive Therapy, was found to be one of the two member Board of Directors of Somatics, a commercial venture involving ECT machine manufacture and sale. Half his yearly income was drawn from Somatics. While not making allusions to possibility or ethics of the commercial interests of any professional in the practice, we are indeed suggesting that the commerce of ECT needs to be more thoroughly investigated.

The National Mental Health Association, the largest non-profit mental health organization in the US, issued a public statement on the 11th of June, 2000. The statement says that the NMHA recognizes that ECT is a controversial procedure and that although it may have beneficial results, it also involves serious risks. It has urged the increased, rigorous and objective research, as well as dissemination of such research, on ECT especially from the safety point of view. The organization also supported the position that ECT recipients must be informed of all the pros and cons and have access to all kinds of information to be able to make fully informed decisions. NMHA further recommends that “ECT be presented as an alternative with extreme caution, only after all other treatment approaches have either failed or have been seriously and thoroughly evaluated and rejected” (www.nmha.org/position/ps31.crm).

CONCLUSION: THE NEED FOR PUBLIC DEBATE
There must be a public debate on the issue of the use of ECT in India. Most world data bases of the last decade, culminating in WHO’s World Health Report, 2001, have highlighted the phenomenal “increase” in the “burden” of mental disorders in developing countries. The spin-offs of globalisation and economic reform, (including debts, ethnic violence, poverty, homelessness, displacement and cultural loss) have resulted in the greater mental ill health of vulnerable groups. Poverty and mental disorder are being linked in a significant way in the literature. Meanwhile, there has been little challenge to the privatization of mental health and little is known about the influence of drug companies on the development of research, technology and service within the sector.

Advocating direct ECT against the background of the Indian reality of a questionable mental health care quality can be risky. Andrade writes that “if the risk-benefit ratio favours the treatment, and if the treatment is better than existing alternatives, in the interest of the patient the treatment must survive” and that “unmodified ECT may be preferable to no ECT” (2000b:p.44). The fact of not having created interesting and humane alternatives in mental health has been the pathos of the Indian mental health service system. It is disappointing that this fact should lead to advocacy of direct ECT, instead of fuelling the creation of imaginative psycho-therapeutic and community models. On the basis of the argument that India is a “poor” country and the poor need quick alternatives, justifications have also existed for various invasive and undignified “treatments”, such as mass sterilization, and hysterectomies, in the case of the mentally challenged girls.

Background to the paper
The ideas presented here are the result of several discussions in our Center by Aparna Waikar, Bhargavi Davar, Chandra Karhadkar, Darshana Bansode, Deepra Dandekar, Seema Kakade, Sonali Wayal, and Yogita Kulkarni. Bhargavi Davar did the research for this paper. Deepra Dandekar and Darshana Bansode submitted a case study from the “Archives” team of our Center, from their documentation of the plight of mentally ill women prisoners in Maharashtra. The community narrative on ECT as “injections” came from our “Needs Assessment Study of NGOs in mental health”. Fieldwork was done by Lalita Joshi and Seema Kakade for this study. Our activities are funded by Sir Dorabji Trust and Action Aid India.

References:
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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

Abrams, R. (1997). Electroconvulsive therapy (3rd edn). Oxford/New York: Oxford University Press.

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.

Department of Health (1999). Electroconvulsive therapy: Survey covering the period from January 1999 to March 1999, England. Statistical Bulletin 1999/22. London: Author.

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

Journal of Psychiatry, 134, 1010–1014. Gelsthorpe, S. (1997). Conflict, collusion, co-operation and trying to be constructive. Clinical Psychology Forum, 103, 34–38.

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.

Royal College of Psychiatrists (1995). The ECT handbook. London:Author.

Royal College of Psychiatrists (1997). ECT (electroconvulsive therapy). Patient Information Factsheet no.7. London: Author.

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

NICE report on ECT

Full report from the UK on the usage of ECT. 2003

Note that the use of ECT in schizophrenia, based on the evidence, is not recommended. Someone might want to send the clue train to New York state hospitals.

Download:

59ectfullguidance.pdf (pdf)

ECT statistics in the UK – Jan-March 1999

Key Facts

In the period January to March 1999

  • There were about 16,500 administrations of Electro-Convulsive Therapy (ECT)
  • 2,800 patients received ECT treatment.
  • There were 900 male patients receiving treatment, compared with 1,900 female patients.
  • 44% of female patients and 36% of male patients receiving ECT treatment were aged 65 and over.
  • 75% of ECT patients were not formally detained under the Mental Health Act 1983.
  • Of the 700 patients formally detained while receiving ECT treatment, 59% did not consent to treatment.

ECT use in the UK 1999 – full report (pdf 300k)

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.

Juli Lawrence testimony to Missouri Senate

Honorable members of the Committee on Children, Families and Health:

It is with regret that I am unable to testify in person today due to a family emergency, but I do appreciate the opportunity to submit this statement concerning HB 134.

My name is Juli Lawrence and I live in Belleville, Illinois, a suburb of St. Louis. I am an ECT survivor, a researcher, and member of the National Advisory Committee for the Center for Mental Health Services/Substance Abuse and Mental Health Services Administration. I am currently working on three ECT studies, which will be published later this year. Two of these studies address the very issue of ECT reporting.

Today the state of Missouri has the unique opportunity to become a leader in our United States, and to distinguish itself as a state that not only cares about its citizens, but cares about the collection and dissemination of ECT data in an effort for continual improvement in health care.

Currently, only a few states require data collection regarding the use of ECT. This reporting bill is needed, not only for researchers, but for patients who are considering ECT as a treatment option. This data will be used to improve health treatments for patients as well as highlighting trends, good or bad. We need these statistics on the use and results of ECT. The National Mental Health Association now includes the need for ECT data collection as part of its official policy position on ECT.

How can doctors make informed decisions concerning the value of ECT if they don’t have access to real data regarding success rates, side effects and the long-term outcomes of ECT? They need this bill.

Texas is among those few progressive states that has a reporting law and Texas stands out as a leader in the nation. Texas has required data collection for nearly a decade, and the statistics gathered have become invaluable to researchers, doctors and patients.

How is it that in a nation as advanced as the United States is unable to accurately determine precise numbers of patients undergoing ECT? No one can say with certainty how many persons in the United States undergo ECT each year. Researchers like myself have to rely on guesses when discussing statistics.

Guesses are simply not good enough, and it’s time we have absolute figures upon which to rely.

Media and the public are always stunned to learn that data is not collected.

The American public wrongly assumes that when it comes to knowing how many patients are being treated with this controversial treatment, the government is keeping track. The government is not keeping track and according to an ongoing poll on my website, the majority think it should.

How can patients make truly informed decisions about treatment options if they don’t have access to this data? Patients need to be able to access these statistics and make their own judgments before making a decision as important as “Should I have ECT or not?” Patients need this bill.

Missouri has the chance to lead the way among states and to say that patients being treated with ECT are deserving of a bill that will track the statistics. By passing HB 134, Missouri legislators will send a message to its citizens that says “We care about your health. We care enough to maintain statistics and to require hospitals to show accountability. We want to maintain records so that improvements can be made.”

I have been studying the Texas data over the last months for a research project and have found that several hospitals are still using a device model that has been recalled by the manufacturer. Since there has been no official governmental recall, many hospitals and doctors have not been informed that the manufacturer is willing to replace the machine with a different model. Without the Texas reporting law, who would have known that some hospitals are still using this dangerous ECT device model?

How many hospitals in Missouri are using this particular machine? We won’t know until this bill is passed and hospitals are required to submit reports. Maybe in a year or two, a researcher will take note of the hospitals that continue to use a dangerous machine and can inform them before a tragedy occurs.

Advances in medicine can only occur when there is accountability and when people know who is being treated and what the results may be. Without this knowledge, the status quo remains and progress does not occur.

I respectfully urge that the members of this committee take the lead. Show the rest of the nation that Missouri is a state that cares about the health of its citizens enough to require ECT reporting. The people deserve to know.

Thank you.

Harold Sackeim grant information

20+ pages of information concerning Harold Sackeim’s application for continuing grant money for “Continuation Pharmacotherapy Following ECT.” Includes progress notes, statistics.

Highlights:

Want to prove his hypothesis that those who don’t respond well to meds also don’t respond well to ECT. (My comment: if you respond to meds, then why do you need ECT?)

High relapse rate, despite added medications.

Read full application:

sackheim_grant_info.pdf