Michael H. Thimble, F.R.C.P., F.R.C. Psych
From Seminars in Neurology
Volume 10, No. 3
September 1990

Although personality and behavior disorders have been described following frontal lobe lesions since the mid part of the last century, it is remarkable how frontal lobe pathologic conditions often go unnoticed clinically, and indeed how the relevance of frontal lobe syndromes in man to an understanding of brain-behavior relationships has been neglected. This is in spite of the pertinent observations of Jacobsen (2) on the effects of frontal lobe lesions in primates, the careful reports of the consequences of head injuries in the World War II, (3) and of patients examined following prefrontal leukotomies, (4) all of which studies lead to the delineation of specific defects in behavior associated with lesions in this part of the brain. Their increasing significance and clinical relevance is noted by the recent publication of several monographs on frontal lobe syndromes (5,6) and the growing literature on various frontal lobe disorders, for example, frontal lobe dementias and frontal lobe epilepsies.

ANATOMIC CONSIDERATIONS

The frontal lobes are anatomically represented by those areas of the cortex anterior to the central sulcus, including the main cortical areas fur the control of motor behavior. The anterior cingulate gyrus can be considered part of the medial frontal lobe. The term "prefrontal cortex" is most appropriately used to designate the main cortical target projections for the mediodorsal nucleus of the thalamus, and this area is also sometimes referred to as frontal granular cortex. It is denoted by Brodmann areas 9-15, 46, and 47.

On the basis of primate data, Nauta and Domesick (7) suggested that the orbital frontal cortex makes connections with the amygdala and related subcortical structures and can be considered an integral part of the limbic system. Other important prefrontal connections are made by the mesocortical dopamine projections from the ventral tegmental area of the midbrain. Unlike subcortical dopamine projections, these neurons lack autoreceptors. (8) Further links from the frontal cortex are to the hypothalamus (the orbital frontal cortex alone in the neocortex projects to the hypothalamus), the hippocampus, and the retrosplenial and entorhinal cortices. It should further be noted that the prefrontal cortex sends projections to, but does not receive projections from, the striatum, notably the caudate nucleus, globus pallidus, putamen, and substantia nigra. A final point is that the area of the prefrontal cortex that receives the dominant dorsomedial thalamic nucleus overlaps with that from the dopaminergic ventral tegmental area.

From the neuropsychiatric point of view, therefore, the most relevant anatomic connections would appear to be frontothalamic, frontostriatal, frontolimbic, and frontocortical, the last deriving from the extensive reciprocal connections of the frontal lobes with sensory association areas, most notably the inferior parietal lobule and the anterior temporal cortex.

BEHAVIOR PROBLEMS WITH FRONTAL LOBE INJURY

One of the specific behavior deficits following frontal lobe damage is attention disorder, patients showing distractibility and poor attention. They present with poor memory, sometimes referred to as "forgetting to remember." The thinking of patients with frontal lobe injury tends to be concrete, and they may show perseveration and stereotypy of their responses. The perseveration, with inability to switch from one line of thinking to another, leads to difficulties with arithmetic calculations, such as serial sevens or carryover subtraction.

An aphasia is sometimes seen, but this is different from both Wernicke's and Broca's aphasia. Luria (9) referred to it as dynamic aphasia. Patients have well-preserved motor speech and no anomia. Repetition is intact, but they show difficulty in propositionizing, and active speech is severely disturbed. Luria suggested that this was due to a disturbance in the predictive function of speech, that which takes part in structuring sentences. The syndrome is similar to that form of aphasia referred to as transcortical motor aphasia. Benson (10) also discusses the "verbal dysdecorum" of some frontal lobe patients. Their language lacks coherence, their discourse is socially inappropriate and disinhibited, and they may confabulate.

Other features of frontal lobe syndromes include reduced activity, particularly a diminution of spontaneous activity, lack of drive, inability to plan ahead, and lack of concern. Sometimes associated with this are bouts of restless, aimless uncoordinated behavior. Affect may be disturbed. with apathy, emotional blunting, and the patient showing an indifference to the world around him. Clinically, this picture can resemble a major affective disorder with psychomotor retardation, while the indifference bears occasional similarity to the "belle indifference" noted sometimes with hysteria.

In contrast, on other occasions, euphoria and disinhibition are described. The euphoria is not that of a manic condition, having an empty quality to it. The disinhibition can lead to marked abnormalities of behavior, sometimes associated with outbursts of irritability and aggression. So-called witzelsucht has been described, in which patients show an inappropriate facetiousness and a tendency to pun.

Some authors have distinguished between lesions of the lateral frontal cortex, most closely linked to the motor structures of the brain, which lead to disturbances of movement and action with perseveration and inertia, and lesions of the orbital and medial areas. The latter are interlinked with limbic and reticular systems, damage to which leads to disinhibition and changes of affect. The terms "pseudodepressed" and "pseudopsychopathic" have been used to describe these two syndromes." A third syndrome, the medial frontal syndrome, is also noted, marked by akinesia, associated with mutism, gait disturbances, and incontinence. The features of these differing clinical pictures have been listed by Cummings, (12) as shown in Table I. In reality, clinically, most patients display a mixture of syndromes.

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Table 1. Clinical Characteristics of the Three Principal Frontal Lobe Syndromes

Orbitofrontal syndrome (disinhibited)

Disinhibited, impulsive behavior (pseudopsychopathic)
Inappropriate jocular affect, euphoria
Emotional lability
Poor judgment and insight
Distractibility

Frontal convexity syndrome (apathetic)

Apathy (occasional brief angry or aggressive outbursts common)

Indifference

Psychomotor retardation

Motor perseveration and impersistence

Loss of self

Stimulus-bound behavior

Discrepant motor and verbal behavior

Motor programming deficits

• Three-step hand sequence
  Alternating programs
  Reciprocal programs
  Rhythm tapping
  Multiple loops

Poor word list generation
Poor abstraction and categorization
Segmented approach to visuospatial analysis

Medial frontal syndrome (akinetic)

Paucity of spontaneous movement and gesture

Sparse verbal output (repetition may be preserved)

Lower extremity weakness and loss of sensation

Incontinence

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In some patients, paroxysmal behavior disorders are recorded. These tend to be short-lived, and may include episodes of confusion and, occasionally, hallucinations. They are thought to reflect transient disturbances of the frontolimbic connections. Following massive frontal lobe lesions, the so-called apathetico-akinetico-abulic syndrome may occur. Patients lie around, passive, unaroused, and unable to complete tasks or obey commands.

Further clinical signs associated with frontal lobe damage include sensory inattention in the contralateral sensory field, abnormalities of visual searching, echo phenomena, such as echolalia and echopraxia, confabulation, hyperphagia, and various changes of cognitive function. Lhermitte (13,14) has described utilization behavior and imitation behavior, variants of environmental dependency syndromes. These syndromes are elicited by offering patients objects of everyday use and observing that, without instruction, they will use them appropriately, but often out of context (for example, putting on a second pair of spectacles when one pair is already in place). They will also, without instruction, imitate an examiner's gestures, no matter how ridiculous.

EPILEPSY

The importance of making an accurate seizure diagnosis in patients with epilepsy has been accelerated in recent years by the use of advanced monitoring techniques such as videotelemetry. The more recent classification schemes of the International League Against Epilepsy recognize a major distinction between partial and generalized seizures (20) and between localization-related and generalized epilepsies. (21) In the latest classification (22) the localization-related epilepsies include frontal lobe epilepsies, in several different patterns. The general characteristics of these are shown in Table 2 and their subcategories in Table 3.

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Table 2. International Classification of Epilepsies and Epileptic Syndromes

1. Localization-related (focal, local, partial) epilepsies and syndromes.

• 1.1 Idiopathic (with age-related onset)
  1.2 Symptomatic
  1.3 Cryptogenic

2. Generalized epilepsies and syndromes

• 2.1 Idiopathic (with age-related onset--listed in order of age)
  2.2 Cryptogenic or symptomatic (in order of age)
  2.3 Symptomatic

3. Epilepsies and syndromes undetermined as to whether they are focal or generalized.

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Table 3. Localization-Related (Focal, Local, Partial) Epilepsies and Syndromes

1. 2 Symptomatic

• Chronic progressive epilepsia partialis continua of childhood (Kojewnikow's syndrome)
  
  Syndromes characterized by seizures with specific modes of precipitation
  Temporal lobe
  
  Frontal lobe
  • Supplementary motor seizures
    Cingulate
    Anterior frontopolar region
    Orbitofrontal
    Dorsolateral
    Opercular
    Motor cortex
  
  Parietal lobe
  
  Occipital lobe

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They may be anatomically categorized, for example, into seizures arising from the rolandic area, the supplementary motor area (SMA). from polar areas (Brodmann areas 10, 11, 12, and 47), the dorsolateral area, the opercular area, the orbital region, and the cingulate gyrus. Rolandic seizures are typical jacksonian simple partial attacks, while SMA-derived attacks often lead to adversion with posturing and autonomic changes. Characteristic features of complex partial seizures arising from frontal areas include frequent clustering of brief seizures, with sudden onset and cessation. Often, the accompanying motor behavior may be bizarre; and, since the surface electroencephalogram (EEG) may be normal, these attacks may readily be diagnosed as hysterical pseudoseizures.

SCHIZOPHRENIA

That neurologic abnormalities underlie the clinical condition schizophrenia is now secure knowledge (see Hyde and Weinberger in this issue of Seminars). However, the precise pathologic lesions and the localization of the abnormalities continue to arouse interest and controversy. Much recent work has highlighted abnormalities of frontal lobe function in this condition. Several authors have drawn attention to the likeness of some schizophrenic symptoms to frontal lobe disorder, in particular that involving dorsolateral prefrontal cortex. Symptoms included are those of the affective changes, impaired motivation, poor insight. and other "defect symptoms." Evidence for frontal lobe dysfunction in schizophrenic patients has been noted in neuropathologic studies, (23) in EEG studies, (24) in radiologic studies using CT measures, (25) with MRI, (26) and in cerebral blood flow (CBF) studies. (27) The last have been replicated by findings of hypofrontality in several studies using positron emission tomography (PET). (28) These findings emphasize the importance of neurologic and neuropsychologic investigation of patients with schizophrenia, using methods that may uncover underlying frontal lobe disturbances, and the important role that frontal lobe dysfunction may play in the development of schizophrenic symptoms. (23)

DEMENTIA

The dementias are assuming increasing importance in psychiatric practice, and progress has been made with regard to classifying them and to discovering their underlying neuropathologic and neurochemical basis. While many forms of dementia involve frontal lobe changes, it is now clear that several types of dementia more selectively affect frontal lobe function, particularly early in the disease. The paradigm of frontal lobe dementia is that described by Pick in 1892, which was associated with circumscribed atrophy of both the frontal and temporal lobes. This form of dementia is much less common than Alzheimer's disease. It is more frequent in females. It may be inherited through a single autosomal dominant gene, although most cases are sporadic.

There are distinguishing features that reflect the underlying pathologic changes of Pick's disease and separate it from Alzheimer's disease. In particular, abnormalities of behavior, emotional changes, and aphasia are frequent presenting features. Some authors have noted elements of the Kluver-Bucy syndrome at one stage or another in the disease. (29) Interpersonal relationships deteriorate, insight is lost early, and the jocularity of frontal lobe damage may even suggest a manic picture. The aphasia is reflected in word-finding difficulties, empty, flat, nonfluent speech, and aphasia. With progression, the cognitive changes become apparent: these include memory disturbance but also impairment on frontal lobe tasks (see later). Ultimately, extrapyramidal signs, incontinence, and widespread cognitive decline are seen.

The EEG tends to remain normal in this disease, although CT or MRI will provide confirmatory evidence of lobar atrophy. The PET picture confirms diminished metabolism in frontal and temporal areas. Pathologically, the brunt of the changes is borne by these areas of the brain and mainly consists of neuron loss with gliosis. The characteristic change is the "balloon cell" which contains disordered neurofilaments and neurotubules, and Pick bodies, which are silver-staining and are also composed of neurofilaments and tubules.

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Recently, Neary and colleagues (30) have drawn attention to a group of patients with non-Alzheimer's dementia who typically present with changes of personality and social conduct and with atypical Pick's changes in the brain. They note that this form of dementia may be more common than previously thought.

Another form of dementia that primarily affects frontal lobe function is that of normal pressure hydrocephalus. This may be related to several underlying causes, including cerebral trauma, previous meningitis, neoplasia, or subarachnoid hemorrhage, or it may occur idiopathically. Essentially, there is a communicating hydrocephalus with failure of absorption of cerebrospinal fluid (CSF) via the sagittal sinus through blockage, the CSF being unable to reach the convexity of the brain or be absorbed through the arachnoid villi. The characteristic clinical features of normal pressure hydrocephalus include gait disturbance and incontinence, with normal CSF pressure. The dementia is of recent onset and has characteristics of a subcortical dementia with psychomotor slowing and dilapidation of cognitive performance, in contrast to more discrete memory abnormalities that may herald the onset of Alzheimer's disease. Patients lose initiative and become apathetic; in some cases the presentation may resemble an affective disorder. In reality the clinical picture can be varied, but frontal lobe signs are a common feature and, especially when combined with incontinence and ataxia, should alert the physician to the possibility of this diagnosis.

Other causes of dementia that may present with an apparently focalized frontal picture include tumors, especially meningiomas, and rare conditions such as Kufs' disease and corticobasal degeneration.

DETECTION OF FRONTAL LOBE DAMAGE

Detection of frontal lobe damage can be difficult, especially if only traditional methods of neurologic testing are carried out. Indeed, this point cannot be overemphasized, since it reflects one of the main differences between traditional neurologic syndromes, which affect only elements of a person's behavior - for example, paralysis following destruction of the contralateral motor cortex -and limbic system disorders generally. In the latter it is the whole of the patient's motoric and psychic life that is influenced, and the behavior disturbance itself reflects the pathologic state. Often, changes can be discerned only with reference to the previous personality and behavior of that patient, and not with regard to standardized and validated behavioral norms based on population studies. A further complication is that these abnormal behaviors may fluctuate from one testing occasion to another. Therefore the standard neurologic examination will often be normal, as may the results of psychological tests such as the Wechsler Adult Intelligence Scale. Special techniques are required to examine frontal lobe function, and care finding out how the patient now behaves and how this compares with his premorbid performance.

Orbitofrontal lesions may be associated with anosmia, and the more the lesions extend posteriorly, the more neurologic signs such as aphasia (with dominant lesions), paralysis, grasp reflexes, and oculomotor abnormalities become apparent. Of the various tasks that can be used clinically to detect frontal pathologic conditions, those given in Table 4 are of value. However, not all patients with frontal damage show abnormalities on testing, and not all tests are found to be abnormal in frontal lobe pathologic states exclusively.

Table 4. Some Useful Tests at Frontal Lobe Function

Word fluency
Abstract thinking (if I have 18 books and two bookshelves, and I want twice as many books on one shelf as the other. how many books on each shelf?)
Proverb and metaphor interpretation
Wisconsin Card Sorting Test
Other sorting tasks
Block design
Maze lest
Hand position test (three-step hand sequence)
Copying tasks (multiple loops)
Rhythm tapping tasks

Cognitive tasks include the word fluency test, in which a patient is asked to generate, in 1 minute, as many words as possible beginning with a given letter. (The normal is around 15.)
Proverb or metaphor interpretation can be remarkably concrete.

Problem-solving, for example carry-over additions and subtractions, can be tested by a simple question (see Table 4). Patients with frontal lobe abnormalities often find serial sevens difficult to perform.

Laboratory-based tests of abstract reasoning include the Wisconsin Card Sort Test (WCST) and other object-sorting tasks. The subject must arrange a variety of objects into groups depending on one common abstract property, for example color. In the WCST, the patient is given a pack of cards with symbols on them that differ in form, color, and number. Four stimulus cards are available, and the patient has to place each response card in front of one of the four stimulus cards. The tester tells the patient if he is right or wrong, and the patient has to use that information to place the next card in front of the next stimulus card. The sorting is done arbitrarily into color, form, or number, and the patient's task is to shift the set from one type of stimulus response to another based on the information provided. Frontal patients cannot overcome previously established responses, and show a high frequency of preseverative errors. These deficits are more likely with lateral lesions of the dominant hemisphere.

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Patients with frontal lobe lesions also do badly on maze learning tasks, the Stroop test, and block design; they show perseveration of motor tasks and difficulty carrying out sequences of motor actions. Skilled movements are no longer performed smoothly, and previously automated actions such as writing or playing a musical instrument are often impaired. Performance on tests such as following a succession of hand positions (with the hand first placed flat, then on one side, and then as a fist, on a flat surface) or tapping a complex rhythm (for example two loud and three soft beats) is impaired. Following nondominant hemisphere lesions, singing is poor, as is recognition of melody and emotional tone, the patient being aprosodic. Perseveration (especially prominent with deeper lesions in which the modulating function of the premotor cortex on the motor structures of the basal ganglia is lost (9) may be tested by asking the patient to draw, for example, a circle or to copy a complex diagram with recurring shapes in it that alternate one with another. The patient may continue to draw circle after circle, not stopping after one revolution, or miss the pattern of recurring shapes (Fig. 2). Imitation and utilization behavior can also be tested for.

In many of these tests there is a clear discrepancy between the patient's knowing what to do and being able to verbalize the instructions, and his failure to undertake the motor tasks. In everyday life this can be extremely deceptive and lead the unwary observer to consider the patient to be either unhelpful and obstructive or (for example, in a medicolegal setting) to be a malingerer.

Some of these tasks, for example the word-fluency task, or inability to make melodic patterns, are more likely to be related to lateralized dysfunction, and the inhibition of motoric tasks relates to the dorsolateral syndrome.

NEUROANATOMIC BASIS OF FRONTAL LOBE SYNDROMES

Several authors have put forward explanations for frontal lobe syndromes. (6,9) The posterolateral areas of the frontal cortex are most closely linked to motor structures of the anterior part of the brain, thus leading to the motor inertias and the perseverations seen with lesions here. They are more pronounced after dominant hemisphere lesions, when the speech-related disorders become manifest. More posterior lesions appear to link with difficulties in organizing movement; anterior lesions result in difficulties in motor planning and a dissociation between behavior and language. Elementary motor perseverations probably require lesions that are deep enough to involve the basal ganglia. Disturbances of attention are related to the brainstem-thalamic-frontal system, and the basal (orbital) syndromes are due to disruption of frontal-limbic links. Loss of inhibitory function over the parietal lobes, with release of their activity, increases the subject's dependence on external visual and tactile information, leading to echo phenomena and the environmental dependency syndrome.

Teuber (31) suggested that the frontal lobes "anticipate" sensory stimuli that result from behavior, thus preparing the brain for events about to occur. The expected results are compared with actual experience, and thus smooth regulation of activity results. More recently, Fuster (5) has proposed that the prefrontal cortex plays a role in the temporal structuring of behavior, synthesizing cognitive and motor acts into purposeful sequences. Stuss and Benson (6) put forward a hierarchical concept for the regulation of behavior by the frontal lobes. They referred to fixed functional systems, including a number of recognized neural activities, such as memory, language, emotion, and attention. which are modulated by "posterior" areas of the brain in contrast to the frontal cortex. Two anterior counterparts are proposed, namely, the ability of the frontal cortex to sequence, change set, and integrate information, and to modulate drive, motivation, and will (the former are most strongly dependent on intact lateral, dorsal and orbital frontal convexity regions; the latter are related more to medial frontal structures). A further independent level is that of executive function of the human frontal lobes (anticipation, goal selection, preplanning, monitoring), which is superordinate to drive and sequencing, but may be subordinate to the role of the prefrontal cortex in self-awareness.

SUMMARY

In this review, some basic aspects of frontal lobe functioning have been discussed and methods of testing for frontal lobe abnormalities outlined. It has been emphasized that the frontal lobes are affected in a number of diseases, which cover a broad spectrum of neuropsychiatric problems. Furthermore, it is suggested that the frontal lobes are involved in syndromes not traditionally thought to be related to frontal lobe dysfunction, for example, schizophrenia, and rarer presentations such as misidentification syndromes, Frontal lobe dysfunction often goes unrecognized, especially in patients who have normal neurologic testing and apparently intact IQ when routine methods of investigation are employed. Although marked disturbances of behavior following frontal lobe dysfunction have now been described for well over 120 years, these large areas of the human brain, and their links with some of the highest attributes of mankind, have been relatively neglected and are worthy of much further exploration by those interested in neuropsychiatric problems.

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REFERENCES

1. Harlow JM. Recovery From the passage of an iron bar through the head. Publications of the Mass Med Soc 1898;2:129-46
2. Jacobsen CF. Functions and the frontal association cortex. Arch Neurol Psychiatry 1935;33:558-9
3. Weinstein S. Teuber ML. Effects of penetrating brain injury on intelligence test scores. Science. 1957;125:1036-7
4. Scoville WB. Selective cortical undercutting as a means of modifying and studying frontal lobe function in man: Preliminary report of 43 operative cases. J Neurosurg 1949;6:65-73
5. Fuster JM. The prefrontal cortex. New York: Raven Press, 1980
6. Stuss DT, Benson DF. The frontal lobes. New York: Raven Press. 1986
7. Nauta WJH, Domesick VB. Neural associations of the limbic system. In: Beckman A, ed. The neural basis of behavior. New York: Spectrum. 1982:175-206
8. Bannon CM, Reinhard JF, Bunney EB, Roth RH. Unique response to antipsychotic drugs is due to absence of terminal autoreceptors in mesocortical dopamine neurones. Nature 1982;296:444-6
9. Luria AR. The working brain. New York: Basic Books, 1973
10. Benson DF. Presentation to the World Congress of Neurology. New Delhi, India, 1989
11. Blumer D, Benson DF. Personality changes with frontal and temporal lobe lesions. In: Benson DF, Blumber D. eds. Psychiatric aspects of neurologic disease. New York: Grune & Stratton. 1975:151-69
12. Cummings JL. Clinical neuropsychiatry. New York: Grune & Stratton. 1985
13. Lhermitte F. Utilization behaviour and its relation to lesions of the frontal lobes. Brain 1983:106:237-55
14. Lhermitte F, Pillon B, Sedaru M. Human autonomy and the frontal lobes. Ann Neurol 1986:19:326-34
15. Mesulam M. Frontal cortex and behaviour. Ann Neurol 1986; 19:320-4
16. Pudenz RH, Sheldon CH. The lucite calvarium - a method of direct observation of the brain. J Neurosurg 1946:3:487-505
17. Lishman WA. Brain damage in relation to psychiatric disability after head injury. Br J Psychiatry 1968:114:373-410
18. Hillbom E. After effects of brain injuries. Acta Psychiatr Neurol Scand 1960;35(Suppl 142):1
19. Trimble MR. Post traumatic neurosis. Chichester: John Wiley & Sons. 1981
20. International League Against Epilepsy. Proposal for revised clinical and electroencephalographic classification of epileptic seizures. Epilepsia 1981:22:489-501
21. International League Against Epilepsy. Proposal for classification of the epilepsies and epileptic syndromes. Epilepsia 1985:26:268-78
22. International League Against Epilepsy. Proposal for revised classification of epilepsies and epileptic syndromes. Epilepsia 1989:30:289-99
23. Benes FM. Davidson J. Bird ED. Quantitative cytoarchitectural studies of the cerebral cortex of schizophrenics. Arch Gen Psychiatry 1986:43:31-5
24. Guenther W. Breitling D. Predominant sensory motor area left hemisphere dysfunction in schizophrenia measured by BEAM. Biol Psychiatry 1985:20:515-32
25. Golden CJ. Graber B, Coffman J. et al. Brain density deficits in chronic schizophrenia. Psychiatry Res 1980:3:179-84
26. Andreasen N. Nasrallah HA. Van Dunn V. et al. Structural abnormalities in the frontal system in schizophrenia. Arch Gen Psychiatry 1986:43:136-44
27. Weinberger DR. Berman KF. Zee DF. Physiologic dysfunction of dorsolateral prefrontal cortex in schizophrenia. Arch Gen Psychiatry 1986:43:114-24
28. Trimble MR. Biological psychiatry. Chichester: John Wiley & Sons. 1988
29. Cummings JL, Benson DF. Dementia, a clinical approach. London: Butterworths. 1983
30. Neary D. Snowden JS. Bowen DM. et al. Cerebral biopsy and the investigation of pre-senile dementia due to cerebral atrophy. J Neurol Neurosurg Psychiatry 1986:49:157-62
31. Teuber HL. The riddle of frontal lobe function in man. In: Warren JM, Akert K, eds. The frontal-granular cortex and behavior. New York: McGraw-Hill. 1964:410-44

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Report prepared for the National Head Injury Foundation
September 1991
by Linda Andre

Introduction

Electroshock, variously known as electroconvulsive therapy, ECT, shock treatment, or simply shock, is the practice of applying 70 to 150 volts of household electric current to the human brain in order to produce a grand mal, or generalized, seizure. A course of ECT usually consists of 8 to 15 shocks, administered every other day, although the number is determined by the individual psychiatrist and many patients receive 20, 30, 40 or more.

Psychiatrists use ECT on persons with a wide range of psychiatric labels, from depression to mania, and have recently begun to use it on persons without psychiatric labels who have medical diseases such as Parkinson's disease.

A conservative estimate is that at least 100,000 persons receive ECT each year, and by all accounts this number is growing. Two-thirds of those being shocked are women, and more than half of ECT patients are over the age of 65, although it has been given to children as young as three. ECT is not given at all in most state hospitals. It is concentrated in private, for-profit hospitals.

ECT drastically changes behavior and mood, which is construed as improvement of psychiatric symptoms. However, since psychiatric symptoms usually recur, often after as little as one month, psychiatrists are now promoting "maintenance" ECT---one electrical grand mal seizure every few weeks, given indefinitely or until the patient or family refuses to continue.

The Evidence For ECT Brain Damage

There are now five decades of evidence for ECT brain damage and memory loss from ECT. The evidence is of four types: animal studies, human autopsy studies, human in vivo studies which use either modern brain-imaging techniques or neuropsychological testing to assess damage, and survivor self-reports or narrative interviews.

Most of the studies of the effects of ECT on animals were done in the 1940s and '50s. There are at least seven studies documenting brain damage in shocked animals (cited by Friedberg in Morgan, 1991, p. 29). The best known study is that of Hans Hartelius (1952), in which brain damage was consistently found in cats given a relatively short course of ECT. He concluded: "The question of whether or not irreversible damage to the nerve cells may occur in association with ECT must therefore be answered in the affirmative."

Human autopsy studies were done on persons who died during or shortly after ECT (some died as a result of massive brain damage). There are more than twenty reports of neuropathology in human autopsies, dating from to 1940s to 1978 (Morgan, 1991, p. 30; Breggin, 1985, p.4). Many of these patients had what is called modern or "modified" ECT.

It is necessary to clarify briefly here what is meant by "modified" ECT. News and magazine articles about ECT commonly claim that ECT as it has been given for the past thirty years (that is, using general anesthesia and muscle-paralyzing drugs to prevent bone fractures) is "new and improved", "safer" (i.e. less brain-damaging) than it was in the 1940s and '50s.

Although this claim is made for public relations purposes, it is flatly denied by doctors when the media is not listening. For example, Dr. Edward Coffey, head of the ECT department at Duke University Medical Center and a well-known advocate of ECT, tells his students in the training seminar "Practical Advances in ECT: 1991":

The indication for anesthetic is simply that it reduces the anxiety and the fear and the panic that are associated or that could be associated with the treatment. OK? It doesn't do anything else beyond that...There are, however, significant disadvantages in using an anesthetic during ECT...The anesthetic elevates seizure threshold... Very, very critical...

So it is necessary to use more electricity to the brain, not less, with "modified" ECT, hardly making for a safer procedure. In addition, the muscle-paralyzing drugs used in modified ECT amplify the risks. They make the patient unable to breathe independently, and as Coffey points out this means risks of paralysis and prolonged apnea.

Another common claim of shock doctors and publicists, that ECT "saves lives" or somehow prevents suicide, can be quickly disposed of. There is simply no evidence in the literature to support this claim. The one study on ECT and suicide (Avery and Winokur, 1976) shows that ECT has no effect on the suicide rate.

Case studies, neuroanatomical testing, neuropsychological testing, and self-reports that remain strikingly similar over 50 years testify to the devastating effects of ECT on memory, identity, and cognition.

Recent CAT scan studies showing a relationship between ECT and brain atrophy or abnormality include Calloway (1981); Weinberger et al (1979a and 1979b); and Dolan, Calloway et al (1986).

The vast majority of ECT research has focused and continues to focus on the effects of ECT on memory, for good reason. Memory loss is a symptom of brain damage and, as neurologist John Friedberg (quoted in Bielski, 1990) points out, ECT causes more permanent memory loss than any severe closed-head injury with coma or almost any other insult to or disease of the brain.

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Reports of catastrophic memory loss date to the very beginning of ECT. The definitive study of ECT's memory effects remains that of Irving Janis (1950). Janis conducted detailed and exhaustive autobiographical interviews with 19 patients before ECT and then attempted to elicit the same information four weeks afterwards. Controls who did not have ECT were given the same interviews. He found that "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." Controls' memories were normal. And when he followed up half of the 19 patients one year after ECT, there had been no return of memory (Janis, 1975).

Studies in the 70s and 80s confirm Janis' findings. Squire (1974) found that the amnesic effects of ECT can extend to remote memory. In 1973 he documented a 30-year retrograde amnesia following ECT. Freeman and Kendell (1980) report that 74% of patients questioned years after ECT had memory impairment. Taylor et al (1982) found methodological flaws in studies that purport to show no memory loss and documented deficits in autobiographical memory several months after ECT. Fronin-Auch (1982) found impairment of both verbal and nonverbal memory. Squire and Slater (1983) found that three years after shock the majority of survivors report poor memory.

The highest governmental authority on medical matters in the United States, the Food and Drug Administration (FDA), agrees that ECT is not good for your health. It names brain damage and memory loss as two of the risks of ECT. The FDA is responsible for regulating medical devices such as the machines used to administer ECT. Each device is assigned a risk classification: Class I for devices that are basically safe; Class II for devices whose safety can be assured by standardization, labeling, etc.; and Class III for devices which pose "a potential unreasonable risk of injury or illness under all circumstances. As a result of a public hearing in 1979, at which survivors and professionals testified, the ECT machine was assigned to Class III. There it remains today, despite a well-organized lobbying campaign by the American Psychiatric Association. In the files of the FDA in Rockville, Maryland, are at least 1000 letters from survivors testifying to the damage that was done to them by ECT. In 1984 some of these survivors organized as the Committee for Truth in Psychiatry to lobby for informed consent as a way of protecting future patients from permanent brain damage. Their statements challenge the assumption that survivors "recover" from ECT:

Most of my life from 1975-1987 is a fog. I remember some things when reminded by friends, but other reminders remain a mystery. My best friend since high school in the 1960s died recently and with her went a big part of my life because she knew all about me and used to help me out with the parts I couldn't remember. (Frend, 1990)

I haven't had a shock for over ten years now but I still feel sad that I can't remember most of my late childhood or any of my high school days. I can't even remember my first intimate experience. What I know of my life is second hand. My family has told me bits and pieces and I have my high school yearbooks. But my family generally remembers the "bad" times, usually how I screwed up the family life and the faces in the yearbook are all total strangers. (Calvert, 1990)

As a result of these "treatments" the years 1966-1969 are almost a total blank in my mind. In addition, the five years preceding 1966 are severely fragmented and blurred. My entire college education has been wiped out. I have no recollection of ever being at the University of Hartford. I know that I graduated from the institution because of a diploma I have which bears my name, but I do not remember receiving it. It has been ten years since I received electroshock and my memory is still as blank as it was the day I left the hospital. There is nothing temporary about the nature of memory loss due to electroshock. It is permanent, devastating, and irreparable. (Patel, 1978)

ECT as Traumatic Brain Injury

Both psychiatrist Peter Breggin (Breggin,, 1991, p. 196) and ECT survivor Marilyn Rice, founder of the Committee for Truth in Psychiatry, have pointed out that minor head injury as a result of trauma often occurs without loss of consciousness, seizures, disorientation, or confusion, and is thus much less traumatic than a series of electroshocks. A better analogy would be that each individual shock is the equivalent of one moderate to severe head injury. The typical ECT patient, then, receives at least ten head injuries in rapid succession.

Proponents as well as opponents of ECT have long recognized it as a form of head injury.

As a neurologist and electroencephalographer, I have seen many patients after ECT, and I have no doubt that ECT produces effects identical to those of a head injury. After multiple sessions of ECT, a patient has symptoms identical :o those of a retired, punch-drunk boxer.. .After a few sessions of ECT, the symptoms are those of moderate cerebral contusion, and further enthusiastic use of ECT may result in the patient functioning at a subhuman level. Electroconvulsive therapy in effect may be defined as a controlled type of brain damage produced by electrical means. (Sament, 1983)

What shock does is throw a blanket over people's problems. It would be no different than if you were troubled about something in your life and you got into a car accident and had a concussion. For a while you wouldn't worry about what was bothering you because you would be so disoriented. That's exactly what shock therapy does. But in a few weeks when the shock wears off, your problems come back. (Coleman, quoted in Bielski, 1990)

We don't have a treatment. What we do is inflict a closed-head injury on people in spiritual crisis.. .closed-head injury! And we have a vast literature on closed-head injury. My colleagues are not eager to have literature on electroshock closed-head injury; but we have it in every other field. And we have considerably more than people are allowing for here today. It is electrical closed-head injury. (Breggin, 1990)

There has never been any debate about the immediate effects of a shock: it produces an acute organic brain syndrome which becomes more pronounced as shocks continue. Harold Sackeim, the ECT establishment's premier publicist (anyone who has occasion to write about or refer to ECT, from Ann Landers to a medical columnist, is referred by the APA to Dr. Sackeim) states succinctly:

The ECT-induced seizure, like spontaneous generalized seizures in epileptics and most acute brain injury and head trauma, results in a variable period of disorientation. Patients may not know their names, their ages, etc. When the disorientation is prolonged, it is generally referred to as an organic brain syndrome. (Sackeim, 1986)

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This is so expected and routine on ECT wards that hospital staff become inured to making chart notations like "Marked organicity" or "Pt. extremely organic" without thinking anything of it. A nurse who has worked for years on an ECT ward says:

Some people seem to undergo drastic personality changes. They come in the hospital as organized, thoughtful people who have a good sense of what their problems are. Weeks later I see them wandering around the halls, disorganized and dependent. They become so scrambled they can't even have a conversation. Then they leave the hospital in worse shape than they came in. (Anonymous psychiatric nurse, quoted in Bielski, 1990)

A standard information sheet for ECT patients calls the period of most acute organic brain syndrome a "convalescence period" and warns patients not to drive, work, or drink for three weeks (New York Hospital-Cornell Medical Center, undated). Coincidentally, four weeks is the maximum time period for which proponents of ECT can claim alleviation of psychiatric symptoms (Opton, 1985), substantiating the statement made by Breggin (1991, pp. 198-99) and throughout the ECT literature that the organic brain syndrome and the "therapeutic" effect are the same phenomenon.

The information sheet states as well that after each shock the patient "may experience transitory confusion similar to that seen in patients emerging from any type of brief anesthesia." This misleading characterization is belied by two doctors' published observations of patients after ECT.(Lowenbach and Stainbrook, 1942). The article begins by stating "A generalized convulsion leaves a human being in a state where all that is called the personality has been extinguished."

A compliance with simple commands like opening and closing the eyes and the appearance of speech usually coincide. The first utterances are usually incomprehensible, but soon it is possible to recognize first the words and then sentences, although they may have to be guessed at rather than directly understood...

If at this time patients were given a written order to write their name, they would not ordinarily follow the command...if then the request was repeated orally, the patient would take the pencil and write his name. At first the patient produces only scribbling and has to be constantly urged to continue. He may even drop back into sleep. But soon the initial of the first name may be clearly discernible...Usually 20 to 30 minutes after a full-fledged convulsion the writing of the name was again normal...

The return of the talking function goes hand in hand with the writing ability and follows similar lines. The muttered and seemingly senseless words and maybe the silent tongue movements are the equivalent of scribbling. But as time goes on it "is possible to establish question and answer sessions. From now on, the perplexity of the patient arising from his inability to grasp the situation pervades his statements.

He may ask if this is a jail. ..and if he has committed a crime.. The efforts of the patient to re-establish their orientation almost always follow the same line: "Where am I."... know you" (pointing to the nurse)... to the question "What is my name?" "I do not know"...

The patient's behavior when asked to perform a task such as to get up from the bed where he lies demonstrates another aspect of the process of recovery.. .he does not act according to voiced intentions. Sometimes urgent repetition of the command would set off the proper movements; in other cases beckoning had to be initiated by pulling the patient from the sitting position or removing one leg from the bed.. .But the patient then frequently stopped doing things and the next series of actions, putting on his shoes, tying the laces, leaving the room, had each time to be expressly commanded, pointed out, or the situation had to be actively forced. This behavior indicates lack of initiative...

It is possible, indeed likely, that a patient and her family could read the entire information sheet mentioned earlier and have no idea that ECT involves convulsions. The words "convulsion" or "seizure" appear not at all. The sheet states that the patient will have "generalized muscular contractions of a convulsive nature".

Recently Dr. Max Fink, the country's best-known shock doctor, offered to let the media interview a patient right after a course of electroshock... for a fee of $40,000 (Breggin, 1991, p. 188).

It is common for persons who have received ECT to report being "in a fog", without any of the judgment, affect, or initiative of their former selves, for a period of up to one year post-ECT. Afterwards they may have little or no memory of what happened during this period.

I experienced the explosion in my brain. When I woke up from the blessed unconsciousness I did not know who I was, where I was, nor why. I could not process language. I pretended everything because I was afraid. I did not know what a husband was. I did not know anything. My mind was a vacuum. (Faeder, 1986)

I just completed a series of 11 treatments and am in worse shape than when I started. After about 8 treatments I thought I had improved from my depression.. . I continued and my effects worsened. I began experiencing dizziness and my memory loss increased. Now that I had the 11th my memory and thinking abilities are so bad I wake up in the morning empty-headed. I don't remember many past events in my life or doing things with the various people in my family. It is hard to think and I don't enjoy things. I can't think about anything else. I can't understand why everyone told me this procedure was so safe. I want my brain back. (Johnson, 1990)

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Long-Term Effects of ECT on Cognitive and Social Functioning

The loss of one's life history--that is, loss of part of the self--is in itself a devastating handicap; but added to this unique quality of ECT head injury are the cognitive deficits associated with other types of traumatic brain injury.

There is not now nearly enough research on the nature of ECT cognitive deficits, or of the impact of these deficits on social roles, employment, self-esteem, identity, and long-term quality of life for survivors. There is only one study which examines how ECT (negatively) affects family dynamics (Warren, 1988). Warren found that ECT survivors "commonly" forgot the very existence of their husbands and children! For example, one woman who had forgotten she had five children was furious when she found out her husband had lied to her, telling her the children belonged to a neighbor. Husbands frequently used their wives' amnesia as an opportunity to reconstruct marital and family history, to the husbands' advantage. Clearly, Warren's study suggests there is much to explore in this area.

There is currently no research which addresses the question of how best to meet the rehabilitative and vocational needs of ECT survivors. One such study, proposed but not implemented in the 1960s, is described in Morgan (1991, pp. 14-19). Its hopeful conclusion that "with enough data, it may some day be possible to deal therapeutically with ECT-damaged patients, perhaps with some radically new approach to psychotherapy, or direct re-education or modification of behavior" has, a generation later, not come to pass. Funding sources such as the National Institute on Disability and Rehabilitation Research must be encouraged to sponsor such research.

The research which exists shows that sensitive psychometric testing always reveals cognitive deficits in ECT survivors. Even given the differences in available testing methods, the nature of these deficits has remained stable over 50 years. Scherer (1951) gave tests of memory function, abstraction, and concept formation to a group of survivors who had received an average of 20 shocks (using brief-pulse or square wave current, the type that is standard today) and to a control group of patients who did not receive ECT. He found that "lack of improvement as between pre- and post-shock results may indicate that shock has injured the patient to the extent that he is unable to achieve his premorbid intellectual potentialities, even though he can shake off the intellectually debilitating effects of the psychosis." He concluded that "harmful organic results in areas of intellectual function.. .may nullify the partial benefits of the treatment."

Templer, Ruff and Armstrong (1973) found that performance on the Bender Gestalt test was significantly worse for persons who had received ECT than for carefully matched controls who had not.

Freeman, Weeks and Kendell (1980) matched a group of 26 ECT survivors with controls on a battery of 19 cognitive tests; all of the survivors were found to be significantly cognitively impaired. The researchers attempted to attribute the impairment to drugs or mental illness, but could not do so. They concluded that "our results are compatible" with the statement that ECT causes permanent mental impairment. The interviews with survivors revealed almost identical deficits:

Forgetful of names, gets easily sidetracked and forgets what he was going to do.

Forgets where she puts things, can't remember names.

Memory poor and gets confused, to such an extent that he loses jobs.

Difficult to remember messages. Gets mixed up when people tell her things.

Said she was known in her bridge club as the "computer because of her good memory. Now has to write things down, and misplaces keys and jewelry.

Can't retain things, has to make lists.

Templer and Veleber (1982) found permanent irreversible cognitive deficits in ECT survivors given neuropsychological testing. Taylor, Kuhlengel and Dean (1985) found significant cognitive impairment after only five shocks. "Since cognitive impairment is such an important side effect of bilateral ECT, it seems important to define as carefully as possible which aspects of the treatment are responsible for the deficit," they concluded. Although they did not prove their hypothesis about the role of an elevation in blood pressure, "It is important to continue to search for the cause or causes of this impairment. If this important side effect could be eliminated or even modified, it could only be a service to patients..." But there is no separating the so-called therapeutic effects from the disabling cognitive effects.

A study-in-progress designed and implemented by members of the National Head Injury Foundation (SUNY Stony Brook, unpublished thesis project) with the same size sample as the Freeman et al study uses a simple self-scoring questionnaire to evaluate cognitive deficits in both the acute and chronic organic brain syndrome stages. The study also elicits information about coping strategies (self-rehabilitation) and about the amount of time it takes to accommodate to deficits.

All respondents in the study indicated they suffered from common symptoms of head injury both during the year after ECT and many, many years afterwards. The average number of years since ECT for the respondents was twenty-three. 80% had never heard of cognitive rehabilitation.

Only one-fourth felt they had been able to adjust to or compensate for their deficits by their own efforts. Most indicated they were still struggling with this process. Of those few who felt they had adjusted or compensated, the average number of years to reach this stage was fifteen. When those who had adjusted or compensated were asked how they did it, the most frequently cited answer was "hard work on my own."

Respondents were asked if they would have liked acknowledgment of or help with their cognitive problems during the year after ECT, and whether they would still like help regardless of how long ago they had been shocked. All but one of the respondents said they would have wanted help in the post-ECT year, and 90% said they still wanted help.

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In the last several years with the increased availability of neuropsychological testing, increasing numbers of ECT survivors have taken the initiative where researchers have failed, and have had testing done. In every known case, testing has shown unmistakable brain dysfunction.

Patients' accounts of cognitive deficits from diverse sources and across continents remain constant from the 1940s to the 1990s. If these people are imagining their deficits, as some shock doctors like to claim, it is unthinkable that patients over five decades should all imagine exactly the same deficits. One cannot read these accounts without calling to mind the description of minor head injury in the National Head Injury Foundation brochure "The Unseen Injury: Minor Head Trauma":

Memory problems are common.. .You may be more forgetful of names, where you put things, appointments, etc. It may be harder to learn new information or routines. Your attention may be shorter, you may be easily distracted, or forget things or lose your place when you have to shift back and forth between two things. You may find it harder to concentrate for long periods of time, and become mentally confused, e.g. when reading. You may find it harder to find the right word or express exactly what you are thinking. You may think and respond more slowly, and it may take more effort to do the things you used to do automatically. You may not have the same insights or spontaneous ideas as you did before.. .You may find it more difficult to make plans, get organized, and set and carry out realistic goals...

I have trouble remembering what I did earlier this week. When I talk, my mind wanders. Sometimes I can't remember the right word to say, or a co-worker's name, or I forget what I wanted to say. I have been to movies that I can't remember going to. (Frend, 1990)

I was an organized, methodical person. I knew where everything was. I'm different now. I often can't find things. I've become very scattered and forgetful. (Bennett, quoted in Bielski, 1990)

These words eerily echo those of the ECT survivors described by Dr. M.B. Brody in 1944:

(18 months after 4 shocks) One day three things were missing, the poker, the paper, and something else I cannot remember. I found the poker in the dustbin; I must have put it there without remembering. We never found the paper and I am always very careful of the paper. I want to go and do things and find I have already done it. I have to think about what I am doing so that I know I have done it.. .it is uncanny when you do things and find you cannot remember them.

(One year after 7 shocks) The following are some of the things I forget: the names of people and places. When the title of a book is mentioned I may have a vague idea that I have read it, but cannot remember what it is about. The same applies to films. My family tells me the outlines and I am able to remember other things at the same time.

I forget to post letters and to buy small things, such as mending and toothpaste. I put things away in such safe places that when they are needed it takes hours to find them. It did seem that after the electric treatment there was only the present, and the past had to be recalled a little at a time.

All of Brody's survivors had incidents of not recognizing familiar people:

(One year after 14 shocks) There are many faces I see that I know I should know quite a lot about, but only in a few cases can I recall incidents connected with them. I find I can adjust myself to these circumstances by being very careful in making strong denials, as fresh personal incidents constantly crop up.

38 years later, a woman who had 7 shocks wrote:

I was shopping in a department store when a woman came over to me, said hello and asked me how I was. I had no idea who she was or how she knew me.. .1 couldn't help feeling embarrassed and helpless, as if I were no longer in control of my faculties. This experience was to be the first of many encounters in which I would be unable to recall people's names and the context in which I knew them. (Heim, 1986)

The deficits in storing and retrieving new information associated with ECT may severely and permanently impair learning ability. And, just as the NHIF brochure states, "Often these problems are not encountered until a person returns to the demands or work, school, or home." Attempting to go or return to school especially overwhelms and commonly defeats ECT survivors:

When I returned to classes I found I couldn't remember material I had learned earlier, and that I was totally unable to concentrate... My only choice was to withdraw from university. If there was one area in which I had always excelled, it was in school. I now felt like a complete failure and that I'd never be able to return to university. (Heim, 1986)

Some of the things I tried to study was like trying to read a book written in Russian---no matter how hard I tried I could not get the sense of what the words and diagrams meant. I forced myself to concentrate but it continued to appear gibberish. (Calvert, 1990)

In addition to destruction of entire blocks of pre-ECT memories I have continued to have considerable difficulty in memory with regard to academic pursuits. To date, of embarrassing necessity I have been forced to tape-record all education materials that require memorization. This has included basic classes in accounting and word-processing materials. I was forced to retake accounting in 1983. Now, I am again forced to retake a basic one-semester course in computerized word processing. Currently, I am finding it extremely embarrassing and hurtful when fellow classmates (however innocently) refer to my struggles in grasping my study materials, thusly: "You are an AIR-BRAIN!" How can I explain that my struggles are due to ECT? (Winter, 1988)

I started school full time and found I did much better than
I could imagine remembering information on field placement and classes---but I couldn't understand what I read or put ideas together---analyze, draw conclusions, make comparisons. It was a shock. I was at last taking courses on theory.. .and ideas just didn't remain with me. I finally accepted the fact that it was just going to be too much torture for me to continue so I quit my field placement, two courses, and attended only one discussion course until the end of the semester when I withdrew. (Maccabee, 1989)

It is often the case that the ECT survivor is disabled from
her or his previous work. Whether or not a survivor returns to work depends on the type of work previously done and the demands it makes on intellectual functioning. The statistics on employment of ECT survivors would seem to be just as dismal as statistics on employment of head-injured persons in general. In the SUNY survey, two-thirds of the respondents were unemployed. Most indicated that they had been employed prior to ECT and unemployed since. One elaborated:

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At the age of 23 my life was changed because after ECT I experienced disabling difficulty understanding, recalling, organizing and applying new information and also problems with distractibility and concentration. I had ECT while I was teaching and because my level of functioning had changed so dramatically I quit my job. My abilities have never returned to pre-ECT quality. Pre-ECT I'd been able to function in a totally individualized sixth-grade classroom where I designed and wrote much of the curriculum myself. Due to the problems I had after ECT I never returned to teaching. (Maccabee, 1990)

A nurse writes of a friend at one year post-ECT:

A friend of mine had 12 ECT treatments in September-October 1989. As a result, he has retrograde and anterograde amnesia and is unable to perform his work as a master plumber, cannot remember his childhood and cannot remember how to get around the city where he has lived all his life. You can imagine his anger and frustration.

The psychiatrists have been insisting that his problem is not ECT-related but is a side effect of his depression. I have yet to see a severely depressed person fight so hard to regain their ability to think clearly and be able to go back to work again. (Gordon, 1990)

She has stated clearly the impossible situation of ECT survivors. There can be no help for them until there is recognition of the traumatic brain injury they have sustained and its disabling effects.

Rehabilitation

ECT survivors have the same needs for understanding, support, and rehabilitation as other head injury survivors. If anything, it could be said that their needs may be greater, since the massive retrograde amnesia unique to ECT can precipitate an even greater crisis of identity than occurs with other head injuries.

Neuropsychologist Thomas Kay, in his paper Minor Head Injury: An Introduction for Professionals, identifies four necessary elements in successful treatment of head injury: identification of the problem, family/social support, neuropsychological rehabilitation, and accommodation; Identification of the problem, he says, is the most crucial element since it must precede the others. Tragically at this time it is the rule rather than the exception that for ECT survivors none of these elements come into play.

This is not to say that ECT survivors never successfully build a new self and a new life. Many courageous and hardworking survivors have---but they have until now always had to do it alone, without any help, and it has taken a sizable chunk of their lifetimes to do it.

As time goes on, I have made a great effort to regain the maximum use of my brain by forcing it to concentrate and to try to remember what I hear and read. It has been a struggle... I feel like I have been able to maximize the undamaged parts of my brain.. .I still mourn the loss of a life that I didn't have. (Calvert, 1990)

Survivors are beginning to share their hard-won strategies with other survivors, professionals who would help them would do well to listen to those whose daily business, even decades after ECT, is surviving.

I tried a course in general psychology, which I'd had As on in college. I quickly discovered that I couldn't remember anything if I just read the text.. .even if I read it several times (like four or five). So I programmed my materials by writing out questions for each sentence and writing the answers on the back of the cards. I then quizzed myself until the material was memorized. I have all the cards from two courses. What a stack... I memorized the book, practically... and worked five to six hours a day on weekends and three or four during the work week... It was quite different from when I was in college. Then, I read things and remembered them. (Maccabee, 1989)

She also describes her own cognitive retraining exercise:

The main exercise consists primarily of counting from 1-10 while visualizing, as steadily as possible, some image (object, person, etc.) I thought of this exercise because I wanted to see if I could practice using the right and left sides of my brain. Since I began this I think I read that that isn't what I was doing. But, it seemed to work. When I first started the exercise I could hardly hold an image in mind, much less count at the same time. But I have become quite good at it and I relate it to an improved ability to deal with distractions and interruptions.

Similar exercises, in fact, are practiced in formal cognitive rehabilitation programs.

Often self-rehabilitation is a desperate, trial-and-error process that takes many lonely, frustrating years. A woman describes how she taught herself to read again after ECT, at age 50:

I could process language only with difficulty. I knew the words, how they sounded, but I had no comprehension.

I did not literally start at "scratch", as a preschooler, because I had some memory, some understanding of letters and sounds---words---but I had no comprehension.

I used TV for newscasts, the same item in the newspaper, and tried to match these together to make sense. Only one item, one line. Try to write it in a sentence. Over and over, again and again.

After about six months (this was daily for hours), I tried Reader's Digest. It took me a very long time to conquer this--no pictures, new concepts, no voice telling me the news item. Extremely frustrating, hard, hard, hard. Then magazine articles. I did it! I went on to "For Whom the Bell Tolls" because I vaguely remembered I had read it in college and had seen the movie. But it had many difficult words and my vocabulary was not yet at the college level, so I probably spent two years on it. It was 1975 when I felt I had reached the college level in reading.(I started in 1970.) (Faeder, 1986)

One survivor for whom the slow process of rehabilitation has taken two decades expresses the hope of many others that the process might be made easier for those being shocked in the '90s:

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I might never have thought that rehabilitation was something that ECT patients could benefit from until I was examined in 1987, at my request, at a local psychogeriatric center because I worried that perhaps I had Alzheimer's disease because my intellectual functioning still caused me problems. During the psychological testing, which extended over a period of two months due to scheduling problems, I observed that my concentration improved and I functioned better at work. I reasoned that the "time-encapsulated" efforts to concentrate and focus my attention carried over. The tests were not meant to be rehabilitative, but they somewhat served this purpose---and convinced me that sequential retraining or practicing of cognitive skills could be beneficial to ECT patients. Of course, this was almost 20 years after ECT...

I hold a responsible, though poorly paying, job as an administrative assistant for a professional organization---performing at tasks that I never thought I would be able to do again. I might have been able to do them earlier if I'd had rehabilitation training. At this time I am concerned about the plight of ECT patients who are still struggling. While these ECT "complainers" are at risk of becoming increasingly depressed---and perhaps suicidal---because of their disabilities, professionals continue to argue about whether or not ECT causes brain damage using insufficient and in some cases outdated data.

I wish that some brain trauma research and rehabilitation
center would accept a few ECT patients and at least see if practicing or "reprogramming" of cognitive skills could result
in improved performance. (Maccabee, 1990)

In 1990, three ECT survivors were treated in the cognitive rehabilitation program of a New York City hospital. Slowly, attitudes and preconceived ideas are changing.

ECT in the 90's

ECT has gone in and out of fashion during its 53-year history; now on the wane, now making a comeback. Whatever happens in this decade (ironically designated by President Bush the Decade of the Brain), ECT survivors cannot afford to wait until a favorable political climate allows them the help they need. They need it now.

There are some hopeful signs. The 1980s saw an unprecedented boom in ECT (medical malpractice) lawsuits citing brain damage and memory loss, to the point where settlements are steadily increasing for those with the stamina and resources to pursue legal redress. The ECT machine remains in Class III at the FDA. ECT survivors are joining head injury support groups and organizations in record numbers.

State legislatures are toughening ECT laws, and city councils
are taking courageous stands against ECT. On February 21, 1991, after well-publicized hearings at which survivors and professionals testified, the Board of supervisors of the City of San Francisco adopted a resolution opposing the use of ECT. A bill pending in the New York State Assembly (AB6455) would require the state to keep statistics on how much ECT is done, but its accompanying strongly worded memorandum opens the door for stricter measures in the future. In July 1991 the Madison, Wisconsin city council proposed a resolution to recommend a ban on the use of ECT. (Shock was banned in Berkeley, California in 1982 until the local psychiatrists' organization overturned the ban on a technicality.) The council's Public Health Committee unanimously agreed that accurate information about the effects of ECT on memory must be presented to patients, and they are writing a resolution to contain full and accurate information. And in August 1991 ECT survivors testified, and a manuscript containing accounts of memory loss by 100 survivors was presented, at hearings in Austin, Texas, before the Texas Department of Mental Health. Subsequently the Department's regulations were revised to contain a stronger warning about permanent mental dysfunction.

A Conclusion

It is difficult, even in so many pages, to paint a full picture of the suffering of ECT survivors and the devastation experienced not only by the survivors but by their families and friends. And so the last words, chosen because they echo the words of so many others over the years, belong to a former nurse estranged from her husband and living on Social Security Disability, fighting in the legal system for redress and working with an advocacy group.

What they took from me was my "self". When they can put a dollar value on theft of self and theft of a mother I would like
to know what the figure is. Had they just killed me instantly the kids would at least have had the memory of their mother as she
had been most of their lives. I feel it has been more cruel, to
my children as well as myself, to allow what they have left to breathe, walk, and talk.. .now the memory my kids will have is of this "someone else" who looks (but not really) like their mother. I haven't been able to live with this "someone else" and the life I've lived for the past two years has not been a life by any stretch of the imagination. It has been a hell in the truest sense of the word.

I want my words said, even if they fall on deaf ears. It's not likely, but perhaps when they are said, someone may hear them and at least try to prevent this from happening again. (Cody, 1985)

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References

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Bennett, Fancher. Quoted in Bielski (1990).

Bielski, Vince (1990). Electroshock's Quiet Comeback. The San Francisco Bay Guardian, April 18, 1990.

Breggin, Peter (1985). Neuropathology and Cognitive Dysfunction from ECT. Paper with accompanying bibliography presented at the National Institutes of Health Consensus Development Conference on ECT, Bethesda, MD., June 10.

Breggin, Peter (1990). Testimony before the Board of Supervisors of the City of San Francisco, November 27.

Breggin, Peter (1991). Toxic Psychiatry. New York: St. Martins Press.

Brody, M.B. (1944). Prolonged memory deficits following electrotherapy. Journal of Mental Science, 90 (July), 777-779.

Calloway, S.P., Dolan, R.J., Jacoby, R.J., Levy, R.(1981). ECT and cerebral atrophy: a computed tomographic study. Acta Psychiatric Scandinavia, 64, 442-445.

Calvert, Nancy (1990). Letter of August 1.

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Coleman, Lee. Quoted in Bielski (1990).

Details of Electrotherapy (undated). New York Hospital/Cornell Medical Center.

Dolan, R.J., Calloway, S.P., Thacker, P.F., Mann, A.H.(1986). The cerebral cortical appearance in depressed subjects. Psychological Medicine,16, 775-779.

Faeder, Marjorie (1986). Letter of February 12.

Fink, Max (1978). Efficacy and safety of induced seizures (EST) in man. Comprehensive Psychiatry, 19 (January/February), 1-18.

Freeman, C.P.L., and Kendell, R.E. (1980). ECT I: Patients' experiences and attitudes. British Journal of Psychiatry, 137, 8-16.

Freeman, C.P.L., Weeks, D., Kendell, R.E. (1980). ECT II: Patients who complain. British Journal of Psychiatry, 137, 17-25.

Friedberg, John. Shock Treatment II: Resistance in the 70s. In Morgan (1991) pp. 27-37.

Frend, Lucinda (1990). Letter of August 4.

Fromm-Auch, D. (1982). Comparison of unilateral and bilateral ECT: evidence for selective memory impairment. British Journal of Psychiatry, 141, 608-613.

Gordon, Carol (1990). Letter of December 2.

Hartelius, Hans (1952). Cerebral changes following electrically induced convulsions. Acta Psychiatrica et Neurologica Scandinavica, Supplement 77.

Heim, Sharon (1986). Unpublished manuscript.

Janis, Irving (1950). Psychologic effects of electric convulsive treatments (I. Post-treatment amnesias). Journal of Nervous and Mental Disease, III, 359-381.

Johnson, Mary (1990). Letter of December 17.

Lowenbach, H. and Stainbrook, E.J. (1942). Observations of mental patients after electroshock. American Journal of Psychiatry, 98, 828-833.

Maccabee, Pam (1989). Letter of May 11.

Maccabee, Pam (1990). Letter to Rusk Institute of Rehabilitation Medicine, February 27.

Morgan, Robert, ed. (1991). Electroshock: The Case Against. Toronto: IPI Publishing Ltd.

Opton, Edward (1985). Letter to the members of the panel, NIH Consensus Development Conference on Electroconvulsive Therapy, June 4.

Patel, Jeanne (1978). Affidavit of July 20.

Rice, Marilyn (1975). Personal communication with Irving Janis, Ph.D., May 29.

Sackeim, H.A. (l986). Acute cognitive side effects of ECT. Psychopharmacology Bulletin, 22, 482-484.

Sament, Sidney (1983). Letter. Clinical Psychiatry News, March, p. 11.

Scherer, Isidore (1951). The effect of brief stimulus electroconvulsive therapy upon psychological test performances. Journal of Consulting Psychology, 15, 430-435.

Squire, Larry (1973). A thirty year retrograde amnesia following electroconvulsive therapy in depressed patients. Presented at the third annual meeting of the Society for Neuroscience, San Diego, CA.

Squire, Larry (1974). Amnesia for remote events following electroconvulsive therapy. Behavioral Biology, 12(1), 119-125.

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

SUNY (State University of New York) at Stony Brook (1990- ) Dept. of Social Work. Unpublished masters' thesis project.

Taylor, John, Tompkins, Rachel, Demers, Renee, Anderson, Dale (1982). Electroconvulsive therapy and memory dysfunction: is there evidence for prolonged deficits? Biological Psychiatry, 17 (October), 1169-1189.

Taylor, John, Kuhlengel, Barbara, and Dean, Raymond (1985). ECT, blood pressure changes and neuropsychological deficit. British Journal of Psychiatry, 147, 36-38.

Templer, D.I., Veleber, D.M. (1982). Can ECT permanently harm the brain? Clinical Neuropsychology, 4, 61-66.

Templer, D.I., Ruff, C., Armstrong, G. (1973). Cognitive functioning and degree in psychosis in schizophrenics given many electroconvulsive treatments. British Journal of Psychiatry, 123, 441-443.

Warren, Carol A.B. (1988). Electroconvulsive therapy, the family, and the self. Research in the Sociology of Health Care, 7, 283-300.

Weinberger, D., Torrey, E.F., Neophytides, A., Wyatt, R.J. (1979a). Lateral cerebral ventricular enlargement in chronic schizophrenia. Archives of General Psychiatry, 36, 735-739.

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

Abstract: Do something, please! I need my freedom. I have all the rights of a respectable human being and all his duties."

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

Full Text:

Abstract:

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

Introduction

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Participants

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

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

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

Method

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

Results

Themes can be organised under the following main questions.

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

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

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

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

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

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

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

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

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

What kind of explanation of ECT were you given?

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

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

`She said, "I don't think the Valium 's doing you any good, so I'll put you on ECT".

Why did you agree to have ECT?

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

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

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

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

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

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

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

---

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

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

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

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

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

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

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

What was the actual experience of ECT like?

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

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

All this generally produced a high level of anticipatory anxiety:

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

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

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

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

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

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

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

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

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

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

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

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

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

---

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

---

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

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

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

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

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

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

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

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

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

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

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

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

Did ECT have any beneficial effects?

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

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

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

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

A woman who also responded dramatically described it like this:

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

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

Did you tell anyone how you felt about ECT?

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

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

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

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

---

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

---

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

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

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

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

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

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

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

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

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

What are your overall views about ECT?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

`It is inhuman and inhumane. '

---

Discussion

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

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

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

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

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

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

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

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

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

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

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

Acknowledgements

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

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References

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

Abse, D.W. & Ewing, J.A. (1956). Transference and countertransference in somatic therapies. Journal of Nervous and Mental Disease, 123, 32-40. Baxter, L.R., Roy-Byrne, P., Liston, E.H. & Fairbanks, L. (1986). The experience of electroconvulsive therapy in the 1980s. Convulsive Therapy, 2, 179189.

Boyer, L.B. (1952). Fantasies concerning ECT. Psychoanalytic Review, 39, 252-270.

Breggin, P. (1991). Toxic Psychiatry. New York: St

Martin's Press.

Calev, A., Kochav-lev, E., Tubi, M.A., Nigal, D.. Chazan, S.. Shapira, B. & Lerer, B.( 1991). Change in attitude toward electroconvulsive therapy: Effects of treatment, time since treatment and severity of depression. Convulsive Therapy, 7, 184-189. Cook, L.C. (1944). Convulsion therapy. International Journal of Mental Science. 90. 435X64.

Duffett, R. & Lelliott, P. (1988). Auditing electroconvulsive therapy: the third cycle. British Journal of Psychiatry, 172, 401405.

Fisher, S., Fisher, R. & Hilkevitch, A. (1953). The conscious and unconscious attitudes of psychotic patients towards electric shock treatment. Journal of Nesous and Mental Disease, 118, 144-152. Fox, H.A. (1993). Patients' fear of and objection to electroconvulsive therapy. Hospital and Community Psychiatry, 44, 357-360.

Frank, LR. ( 1990). Electroshock: death, brain damage, memory loss and brainwashing. In D. Cohen (Ed.) Challenging the Therapeutic State. Journal of Mind and Behaviour, I1, 489-512.

Freeman, C.PL. & Cheshire, K.A. (1986). Attitude studies on electroconvulsive therapy. Convulsive Therapy, 2, 31-42.

Freeman, C.P.L. & Kendall, R.E. (1980). ECT: patients' experiences and attitudes. British Journal of Psychiatry, 137. 8-16.

Friedberg, J. ( 1976). Shock Treatment is not Good for your Brain. San Francisco: Glide Publishing. Gomez, J. (1975) Subjective side-effects of ECT. British Journal of Psychiatry, 127, 609-611. Gordon, H.L. (1948). Fifty shock therapy theories. Military Surgeon, 103, 397-401.

Hillard, J.R. & Folger, R. ( 1977) Patients' attitudes and attributions to electroconvulsive shock therapy. Journal of Clinical Psychology, 33, 855-861.

Hughes, J., Barraclough, B.M. & Reeve, W. (1981). Are patients shocked by ECT? Journal of the Royal Society of Medicine, 74, 283-285. Kerr, R.A., McGrath, J.J., O'Kearney, R.T. & Price, J. (1982). ECT: misconceptions and attitudes. Australian and New Zealand Journal of Psychiatry, 16, 4349.

Lawrence, J. (1997). Voices from within; a study of ECT and patient perceptions.

Lindow. V. ( 1992). A service user's view. In H. Wright & M. Giddey (Eds.), Mental Health Nursing: From First Principles to Professional Practice. London: Chapman & Hall.

Malcolm, K. (1989). Patients' perceptions and knowledge of electroconvulsive therapy. Psychiatric Bulletin, 13, 161-165.

The Mental Health Foundation (1997). Knowing our own Minds. London:The Mental Health Foundation.

MIND (1993) Safe and Effective? MIND's views on psychiatric drugs, ECT and surgery. London: MIND.

MIND(1995). Older women and ECT. London: MIND Pettinati, H.M., Tamburello, B.A., Ruetsch, C.R. & Kaplan, F.N. ( 1994). Patient attitudes towards electroconvulsive therapy. Psychopharmacology Bulletin, 30, 471475.

Rogers, A., Pilgrim, D. & Lacey, R. ( 1993). Experiencing Psychiatry: Users ' Views of Services. London: Macmillan.

Riordan, D.M., Barron, P. & Bowden, M (1993) ECT: A patient-friendly procedure? Psychiatric Bulletin, 17, 531-533.

Royal College of Psychiatrists (1997). Patient information factsheet number 7: Electroconvulsive therapy. London: Royal College of Psychiatrists. Royal College of Psychiatrists ( 1995). The ECT Handbook. London: Royal College of Psychiatrists. Szuba, M.P., Baxter. L.R.. Liston, E.H. & Roy-Byrne, P. ( 1991). Patient and family perspectives of electroconvulsive therapy: Correlation with outcome. Convulsive Therapy, 7, 175-183. UKAN (United Kingdom Advocacy Network) ( 1996). ECT Survey. The Advocate, Issue I, Spring/Summer, 24-28.

Wallcraft, J. ( 1987). Electroconvulsive therapy. Is there any justification for its continued use? Unpublished BSc thesis, Middlesex Polytechnic. Warren, C. (1988) Electroconvulsive therapy, the self and family relations. Research in the Sociology of Health Care, 7, 283-300.

Wayne, G.J. (1955). Some unconscious determinants in physicians motivating the use of particular treatment methods. Psychoanalytic Review, 42, 83-87. Weigart, E.V. (1940). Psychoanalytical notes on sleep and convulsion treatment in functional psychoses. In L.B. Boyer (1952), Fantasies concerning ECT. Psychoanalytic Review, 39, 252-270.

Weiner, R.D. & Krystal, A.D. (1994) The present use of electroconvulsive therapy. Annual Review of Medicine, 45, 273-281.

Williams, J. & Watson, G. (1994). Mental health services that empower women: the challenge to clinical psychology. Clinical Psychology Forum, 64, 1117.

Winnicott, D.W. (1947) Physical therapy of mental disorder. British Medical Journal, May 17, 688689.

LUCY JOHNSTONE

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

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

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By Larry R. Squire and Pamela Slater
American Journal of Psychiatry 135:11, November 1978

The memory loss associated with bilateral and nondominant unilateral ECT was assessed with verbal memory tests known to be sensitive to left temporal lobe dysfunction. Bilateral ECT markedly impaired delayed retention of verbal and nonverbal material. Right unilateral ECT impaired delayed retention of nonverbal material without measurably affecting retention of verbal material. Nonverbal memory was affected less by right unilateral ECT than by bilateral ECT. These findings, taken together with a consideration of the clinical efficacy of the two types of treatment, make what appears to be a conclusive case for unilateral over bilateral ECT.

Electroconvulsive therapy (ECT) has long been considered an effective treatment for depressive illness (1,2). The memory loss associated with electroconvulsive therapy treatment has been well documented (3,5). For example, following conventional bilateral treatment, memory loss can extend to events that occurred many years before treatment as well as to events that occur during the weeks after treatment. Memory functions gradually improve as time passes after treatment. (6)

It has been generally accepted that right unilateral ECT is a clinically effective treatment that produces less impairment of new learning capacity and less amnesia for remote events than bilateral ECT (7,13). However, since right unilateral ECT is specifically associated with impairment in nonverbal memory (e.g., memory for spatial relationships, faces, designs and other material that is difficult to encode verbally (14,17), and since most studies of ECT and memory loss have employed verbal memory tests, the actual extent of memory loss associated with right unilateral ECT has remained somewhat unclear. It has been suggested that the amnesic effects of left or right unilateral ECT may be similar to the effects of left or right temporal lobe dysfunction (18). Accordingly, if memory were assessed with nonverbal tests specifically sensitive to right temporal lobe dysfunction, the amnesic effect of right unilateral ECT might prove to be as great as or even greater than that of bilateral ECT.

Only two studies have addressed this issue directly, employing verbal and nonverbal memory tests with patients receiving bilateral or right unilateral ECT. In the first study (15) impairment in one nonverbal test was somewhat greater after bilateral ECT than after unilateral ECT, but this difference was not statistically significant. In the second study (16) the results were ambiguous. Impairment in a nonverbal test was greater in the unilateral group after 4 treatments, but greater in the bilateral group 3 months after treatment. That study was further complicated by the fact that one-third of the patients given unilateral treatment did not have a grand mal seizure. Finally, since it was not clear how patients with identified right unilateral lesions would perform on the nonverbal tests used in these two studies, it was difficult to be sure how specifically sensitive the tests were to right hemispheric dysfunction.

The present study investigated memory functions in patients receiving bilateral or right unilateral ECT. Assessments of memory were made with two verbal tests known to be sensitive to left temporal lobe dysfunctions and two nonverbal tests known to be sensitive to right temporal lobe dysfunction.

Method

Subjects

The subjects were 72 psychiatric inpatients (53 women and 19 men) from 4 private hospitals, who had been prescribed a course of ECT. The diagnoses as recorded upon admission by the psychiatrists were depression (N=55); this diagnosis included designations of primary affective disorder, involutional melancholia, manic-depressive, and psychotic depression, neurotic depression (N=11), schizo-affective disorder (N=5), and hysterical personality (N=1). Patients with neurological disorders, schizophrenia with depression, depression secondary to alcoholism or drug abuse and patients who had received ECT during the previous 12 months were excluded from the study. Most of the patients (N=45) had not received ECT before; 27 had received ECT 1 to 15 years earlier.

The 72 patients in the study were assigned to 3 groups (table 1). Group 1 consisted of 33 patients who had been prescribed bilateral ECT. Group 2 consisted of 21 patients who had been prescribed right unilateral ECT. The choice of bilateral or unilateral ECT depended on the preferences of the individual psychiatrists and was therefore not random. However, since the patients about to receive bilateral or unilateral treatment did not differ measurably on their memory test scores before ECT (figure 1), it seems reasonable to assume that group differences emerging after ECT can be attributed to the type of ECT administered. Group 3, a control group, consisted of 18 randomly selected patients who were only tested before receiving a course of ECT. Fourteen of these patients were scheduled to receive bilateral ECT and 4 right unilateral ECT. All subjects were determined to be strongly right-handed; they reported that they did not use their left hand for any everyday activity and had no left-handed parent or sibling.

ECT

ECT was administered three times a week on alternate days following medication with atropine, methohexital sodium, and succinylcholine. Bilateral and unilateral treatments were administered using a Medcraft B-24 machine. For bilateral treatment electrode placement was temporal-parietal; for unilateral treatment both electrodes were placed on the right side of the head, as described by McAndrew and associates (19) (N=19) and by D'Elia (7) (N=10). Amnesic effects of nondominant unilateral ECT have been reported to be similar despite wide variation in electrode placement (20,21). The stimulus parameters (140-170 v for .75-1.0 seconds) were sufficient to induce a grand mal seizure throughout the course of all treatments.

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Tests and Procedures

Two memory tests, each consisting of a verbal and a nonverbal portion, were employed.

Test 1A (verbal portion: story recall). A short paragraph was read to the subject (6). Patients with identical dysfunction of the left temporal lobe are known to perform more poorly on this test than patients with dysfunction of the frontal parietal or right temporal region (22). Immediately after hearing the story, and again the next day (16-19 hours later), subjects were asked to recall as much as they could remember of it. The paragraph was divided into 20 segments, and the score was the number of segments recalled. Eighteen patients receiving bilateral ECT and 13 receiving right unilateral ECT were tested before treatment and again, with an equivalent form of the test, 6-10 hours after the fifth treatment of the series.

Test 1B (nonverbal portion: memory for geometric figure). Subjects copied a complex geometrical design (the Rey-Osterrieth figure [23] or the Taylor figure [24] and were then asked to reproduce it from memory 16-19 hours later. Patients with right temporal lesions are known to be deficient on this task, whereas patients with left temporal lesions exhibit no impairment (25). The score for this test depended on the number of properly placed line segments (maximum score=36 points). The same patients given test 1A (above) were tested with one of these figures before ECT and with the other ones 6-10 hours after the fifth treatment.

Test 2A (verbal portion: short-term memory distractor test). Subjects were shown a consonant trigram, distracted for a variable interval (0, 3, 9 or 18 seconds), and then asked to recall the consonants (26). Patients with left temporal lesions are impaired on this task; patients with right temporal lesions are not (27). Subjects received 8 trials at each retention interval, and their score was the number of consonants correctly recalled without regard to order. The maximum score was 24. Fifteen patients receiving bilateral ECT were tested on two occasions with equivalent forms of this test. These sessions were scheduled 2-3 hours after the first treatment and 2-3 hours after the third treatment in the series. In addition, 8 patients receiving right unilateral ECT were tested 2-3 hours after their first and third treatments. Finally, 18 patients were tested on one occasion 1-2 days before their first treatment.

Test 2B (nonverbal portion: spatial memory). subjects attempted to remember the position of a small circle located along an 8-inch horizontal line. Patients with right temporal lesions are impaired on this task; patients with left temporal lesions are not (27). subjects inspected the circle on the line for 2 seconds and then were distracted for 6, 12 or 24 seconds by arranging strings of random digits into numerical order. Then subjects attempted to mark on a different 8-inch line the remembered position of the circle. Twenty-four trials were given, with 8 at each of the three retention intervals. The score on each trial was the distance (in millimeters) between the position of the originally presented circle and the position of the circle as marked by the subject. The score on the test at each retention interval was the total error (in millimeters) for all 8 trials. Test 2B was given on the same occasions and to the same patients as test 2A (above).

Results

Figure 1 shows the results with test 1 for patients who received bilateral or unilateral ECT. Before ECT these two groups of patients did not differ from each other on any of the measures of immediate or delayed recall (for the verbal test t.10; for the nonverbal test, t=0.7, p>.10). After ECT patients receiving bilateral treatment were able to remember verbal material immediately after hearing it as well as they could before ECT (before ECT versus after ECT, t=0.1, p>.10), and they were able to copy a complex figure as well as before ECT (t=0.1, p>.10). However, their performance was severely impaired on delayed tests of verbal and nonverbal memory (verbal test: before ECT versus after ECT, t=5.6, p<0,1; nonverbal test: before ECT versus after ECT, t=3.7, p<0.1).

Right unilateral ECT did not affect verbal memory, as measured by test 1A. That is, the delayed recall scores of patients receiving right unilateral treatment were about the same after ECT as before (t=0.6, p>.10). However, nonverbal memory was significantly impaired by right unilateral ECT (test 1B). Before unilateral ECT the score for reproducing the geometric figure after a delay was 11.9, and after unilateral ECT the corresponding score was 7.1 (t=2.7, p<.05). This impairment in nonverbal memory associated with unilateral ECT was not as great as the impairment in nonverbal memory associated with bilateral ECT (t=2.1, p<.05).

Figure 2 shows the results with test 2 for patients receiving bilateral ECT, patients receiving right unilateral ECT, and a control group of patients about to begin a course of bilateral or unilateral ECT. For the short-term memory distractor test, patients receiving bilateral ECT were impaired, but patients receiving right unilateral ECT performed normally. An analysis of variance with repeated measure on one factor (28) indicated that the scores of bilateral patients were significantly lower than those of both unilateral patients (F=10.8, p<.01) and control patients (F=5.7, p,10).

For the spatial memory test bilateral ECT also produced a marked impairment (bilateral group versus control group, F=22.4, p<.01). The scores of unilateral patients were also poorer than those of control patients, although this difference fell short of significance (F=2.64, p=.12). Finally, the effect on nonverbal memory associated with unilateral ECT was not as great as the effect associated with bilateral ECT (F=9.6, p<.01).

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Discussion

The results can be summarized by three main conclusions.

1. Bilateral ECT markedly impaired the ability to retain both verbal and nonverbal material.
2. Right unilateral ECT impaired the ability to retain nonverbal material without measurably affecting memory for verbal material.
3. The impairment in nonverbal memory associated with right unilateral ECT was less than the impairment in nonverbal memory associated with bilateral ECT.

The findings that bilateral ECT markedly affected memory and that right unilateral ECT exerted a material-specific effect on nonverbal memory are consistent with the results of a number of studies of ECT and memory loss (3-5,7). However, it should be noted that the extent to which bilateral or right unilateral ECT impairs memory depends on the sensitivity of memory tests to the effects of ECT. For example, in the present study right unilateral ECT had no measurable effect on verbal memory; yet performance on some verbal memory tests can be impaired by right unilateral treatment (10,12). Accordingly, it is difficult to compare the amnesic effects of bilateral and right unilateral ECT unless these effects are assessed in the same study using the same tests.

The present study employed memory tests known to be sensitive to either left or right temporal lobe dysfunction. The results clearly indicated that the effect of right unilateral ECT on both verbal and nonverbal memory was less than that of bilateral ECT. It has sometimes been assumed that right unilateral ECT produces as much memory dysfunction as bilateral ECT on those aspects of memory function associated with the right hemisphere. To our knowledge, the study reported here is the first to clearly demonstrate that right unilateral ECT produces less memory dysfunction for nonverbal material than bilateral ECT.

The therapeutic efficacy of bilateral and unilateral ECT has been compared in a large number of studies (for reviews see references 29 and 30). Taken together, these studies indicate that courses of bilateral or unilateral ECT are approximately equivalent. They lead to similar reductions in depressive symptoms, are associated with similar relapse rates, and exhibit similar efficacy at follow-up. One review (29) has suggested that the slight disadvantage in immediate efficacy sometimes reported for unilateral treatment, as well as the apparently widespread impression (footnote 1) that unilateral ECT is not as effective as bilateral ECT, may be due to occasional failures to produce a maximal seizure with the unilateral technique. Since the therapeutic effect of ECT is bound to the seizure (32), even one sub-maximal seizure during a course of unilateral treatment could account for reported slight differences between unilateral and bilateral ECT. Several practical suggestions to ensure that unilateral ECT produces a grand mal seizure have been outlined (29).

When given properly, unilateral ECT seems to be clearly preferable to bilateral ECT since the risks to verbal and nonverbal memory are less than for bilateral treatment. It should be noted that some risks to memory exist even for unilateral ECT. The benefits to be derived from this procedure should therefore be weighed carefully against these risks and against the possible risks of alternative therapies to form a basis for clinical judgment.

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1. A recent survey of members of the American Psychiatric Association conducted by the APA Task Force on ECT indicated that of 3,000 respondents, 75% of those who used ECT used bilateral for all their patients. (31)

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References

1. Greenblatt M: Efficacy of ECT in affective and schizophrenic illness. Am J Psychiatry 134: 1001-5, 1977.

Abstract: The author reports on studies of the comparative efficacy of ECT, the newer psychotropic drugs, and combinations of both in the treatment of depression and schizophrenia. He concludes that ECT is indicated for acutely suicidal and other severely impaired depressive patients but not necessarily for schizophrenic patients, although ECT has been successful with some schizophrenic patients for whom drugs were ineffective.

2. Freedman AM, Kaplan HI, Sadock BJ (eds): Comprehensive Textbook of Psychiatry, 2nd ed. Baltimore, Williams and Wilkins Co. 1975.

3. Harper RG; Wiens AN: Electroconvulsive therapy and memory. J Nerv Ment Dis 161: 245-54, 1975.
Abstract: Recent research on the effects of electroconvulsive therapy (ECT) on memory is critically reviewed. Despite some inconsistent findings, unilateral nondominant ECT appears to affect verbal memory less than bilateral ECT. Adequate research on multiple monitored ECT is lacking. With few exceptions, the research methodologies for assessing memory have been inadequate. Many studies have confounded learning with retention, and only very recently has long term memory been adequately studied. Standardized assessment procedures for short term and long term memory are needed, in addition to more sophisticated assessment of memory processes, the duration of memory loss, and qualitative aspects of memories.

4. Squire LR: Title: ECT and memory loss. 134: 997-1001, Am J Psychiatry 1977.
Abstract: The author reviews several studies that clarify the nature of the memory loss associated with ECT. Bilateral ECT produced greater anterograde memory loss than right unilateral ECT and more extensive retrograde amnesia than unilateral ECT. Reactivating memories just before ECT did not produce amnesia. Capacity for new learning recovered substantially by several months after ECT, but memory complaints were common in individuals who had received bilateral ECT. Other things being equal, right unilateral ECT seems preferable to bilateral ECT because the risks to memory associated with unilateral ECT are smaller.

5. Dornbush RL, Williams M: Memory and ECT, in Psychobiology of Convulsive Therapy. Edited by Fink M, Kety S, McGaugh J, et al. Washington DC, VH Winston & Sons, 1974.

6. Squire LR; Chace PM: Memory functions six to nine months after electroconvulsive therapy. Arch Gen Psychiatry 12: 1557-64, 1975.
Abstract: Memory functions after electroconvulsive therapy (ECT) were assessed in 38 former patients who had received bilateral treatment, right unilateral treatment, or hospitalization without ECT six to nine months previously. Results of six different tests of delayed retention and remote memory provided no evidence for persisting memory impairment. Nevertheless, persons who had received bilateral ECT rated their memory as impaired significantly (P less than .05) more often than did persons in the other follow-up groups. Although considerable effort was made to maximize the sensitivity of the memory tests, it is possible that, long after ECT, some impairment of memory remained that was not detected by these tests. Alternatively, it is hypothesized that the impairment of recent and remote memory initially associated with bilateral ECT could cause some persons to become more alert to subsequent memory failures and then to underestimate their memory abilities.

7. D'Elia G. Unilateral electroconvulsive therapy, in Psychobiology of Convulsive Therapy. Edited by Fink M, Kety S, McGaugh J, et al. Washington DC, VH Winston & Sons, 1974.

8. Squire LR; Slater PC; Chace PM: Retrograde amnesia: temporal gradient in very long term memory following electroconvulsive therapy. Science 187: 77-9, 1975.
Abstract: A newly designed remote memory test has been used to assess the temporal dimension of prolonged retrograde amnesia. Patients given a course of electroconvulsive treatments for relief of depressive illness exhibited a temporal gradient of retrograde amnesia after five treatments. Memories acquired up to about 3 years before treatment were impaired, but memories acquired 4 to 17 years before treatment were not affected. The results suggest that the neural substrate of memory gradually changes with the passage of time after learning and that resistance to amnesic treatment can continue to develop for years.

9. Bidder TG; Strain JJ; Brunschwig L: Bilateral and unilateral ECT: follow-up study and critique. Am J Psychiatry 6: 737-45, 1970.

10. Strain JJ; Brunschwig L; Duffy JP; Agle DP; Rosenbaum AL; Bidder TG: Comparison of therapeutic effects and memory changes with bilateral and unilateral ECT. Am J Psychiatry 125: 50-60, 1968.

11. Cronin D; Bodley P; Potts L; Mather MD; Gardner RK; Tobin JC: Unilateral and bilateral ECT: a study of memory disturbance and relief from depression. J Neurol 33: 705-13, 1970.

12. Frombolt P. Christensen AL, Stromgren LS: The effects of unilateral and bilateral electroconvulsive therapy on memory. Acta Psychiatr Scand 49:466-478, 1973.

13. Dornbush R; Abrams R; Fink M: Memory changes after unilateral and bilateral convulsive therapy (ECT). Br J Psychiatry 548: 75-8, 1971.

14. Berent S; Cohen BD; Silverman A: Changes in verbal and nonverbal learning following a single left or right unilateral electroconvulsive treatment. Biol Psychiatry, 10:95-100, 1975.

15. Cohen BD; Noblin CD; Silverman AJ; Penick SB: Functional asymmetry of the human brain. Science 162: 475-7, 1968.

16. Halliday AM, Davison K, Browne MW, et al: A comparison of the effects on depression and memory of bilateral ECT and unilateral ECT to the dominant and nondominant hemispheres. Br J Psychiatry 114:997-1012, 1968.

17. D'Elia G; Lorentzson S; Raotma H; Widepalm K: Comparison of unilateral dominant and non-dominant ECT on verbal and non-verbal memory. Acta Psychiatr Scand 53: 85-94, 1976.
Abstract: An intraindividual, double-blind cross-over comparison of the effects of dominant (D) and non-dominant (ND) temporo-parietal unilateral electroconvulsive therapy (ECT) was performed in connection with the second and third treatment, the type of electrode placement being allocated at random. Four memory tests were used. The 30 Word-Pair Test is an audio-visual verbal recall test, the 30 Figure Test is a mainly visual recognition test with easily verbalized items. The 30 Geometrical Figure Test and the 30 Face Test are nonverbal recognition tests of visual complex and unfamiliar material. Compared with dominant ECT, non-dominant ECT has a more negative influence in the complex non-verbal visual tests, whereas dominant ECT has a more negative effect on verbal memory. In the non-verbal tests, as compared with the verbal ones, the encoding (or learning) is relatively more influenced and the retention (or storage) relatively less. An impairment either of complex apperceptive function or of memory may be responsible for the relatively lower performance in non-verbal tests after non-dominant ECT.

18. Inglis J: Shock, surgery and cerebral asymmetry. Br J Psychiatry 117: 143-8. 1970.

19. McAndrew J; Berkey B; Matthews C: The effects of dominant and nondominant unilateral ECT as compared to bilateral ECT. Am J Psychiatry 124: 483-90, 1967. 20. D'Elia G: Memory changes after unilateral electroconvulsive therapy with different electrode positions. Cortex 12: 280-9, 1976.
Abstract: In the course of a series into the effects of unilateral electroconvulsive therapy on memory functions, double-blind cross-over intraindividual comparison were performed after the second and third treatment in patients suffering from depressive syndrome. The main aim of the project, which is still in course, was to explore the possibility of a further reduction of the side-effects of this antidepressant method. Three separate comparisons were performed between unilateral nondominant temporo-parietal ECT and (a) unilateral dominant temporo-parietal ECT, (b) unilateral non-dominant fronto-parietal ECT, (c) unilateral non-dominant fronto-fronto ECT (Figure 1). The treatments were given under total anaesthesia and with subtotal muscle relaxation. Four memory tests were administered three hours after the second and the third ECT, the treatment methods being allocated at random. The 30 Word-Pair Test is mixed audio-visual recall verbal test. The 30 Figure Test is mainly visual recognition test with items which can be easily verbally patterned. Further, two visual recognition tests, the 30 Face Test and the 30 Geometrical Figure Test, composed of not easily verbalized items were administered. For each test, three memory scores were obtained, immediate memory score (IMS, immediately after the presentation of the items, three hours after ECT), delayed memory score (DMS, three hours after IMS) and their difference, forgetting score (FS). IMS is considered to be a function of the hypothetical memory variable, learning, and FS a function of the variable retention. DMS is related to both learning and retention. When non-dominant and dominant temporo-parietal ECT are compared, there are, after non-dominant ECT, significantly lower IMS and DMS in the 30 Face Test but only lower IMS in the 30 Geometrical Figure Test. The difference in DMS for the 30 Word-Pair Test is in the opposite direction (Figure 2). In the comparison between non-dominant temporo-parietal vs non-dominant fronto-frontal ECT, a slightly, non-significant, lower IMS in the 30 Face Test is apparent (Figure 4). Other important trends are not found in any of the studies (Figures 2-4). The results show that differential effects are obtained with different memory material when dominant and non-dominant electrode positions are used in unilateral ECT. The results are discussed in relation to the question whether high level perceptive function or memory is involved in the encoding-storage of complex non-verbal material in the non-dominant hemisphere.

21. D'Elia G; Widepalm K: Comparison of frontoparietal and temporoparietal unilateral electroconvulsive therapy. Acta Psychiatr Scand 50: 225-32, 1974.

22. Milner B: Psychological defects produced by temporal lobe excision. Res Publ Assoc Res Nerv Ment Dis 36:244-257, 1958.

23. Osterrieth P: Le test de copie d'une figure complexe. Arch Psychol 30:206-356, 1944.

24. Milner B, Teuber HL: Alteration of perception and memory in man: reflections on methods in Analysis of Behavioral Change. Edited by Weiskrantz L. New York, Harper & Row, 1968.

25. Teuber HL, Milner B, Vaughan HG: Persistent anterograde amnesia after stab wound of the basal brain. Neuropsychologia 6:267-282, 1968.

26. Squire LR; Slater PC: Anterograde and retrograde memory impairment in chronic amnesia. Neuropsychologia 16: 313-22, 1978.

27. Milner B: Hemispheric specialization: scope and limits, in The Neurosciences Third Study Program. Edited by Schmitt PO, Worden FG. Cambridge, Mass, MIT Press, 1974.

28. Winer BJ: Statistical Principles in Experimental Design. New York, McGraw-Hill Book Co, 1962.

29. D'Elia G; Raotma H: Is unilateral ECT less effective than bilateral ECT? Br J Psychiatry 126: 83-9, 1975.

30. Stromgren LS: Unilateral versus bilateral electroconvulsive therapy. Acta Psychiatr Scand Supplement 240, 1973, pp 8-65.

31. American Psychiatric Association Task Force Report: Electroconvulsive Therapy. Washington, DC, APA, 1978.

32. Cronholm BJ, Ottosson JO: Experimental studies of the therapeutic action of electroconvulsive therapy in endogenous depression. Acta Psychiatr Neurol Scand Supplement 145, 1960, pp 69-97.

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ECT Studies

Go straight to the journals and read more about ECT and its effects, as well as the issue of informed consent for electroconvulsive therapy. One of the biggest criticisms about contemporary ECT research is that the leading researchers are those who make their living from ECT - writing papers, books, and yes, owning the companies that manufacture not only the machinery, but the accessories (mouth guards, and so on).

The leading names in the ECT industry, to aid your reading, plus the companies they are affiliated with:

Max Fink (Somatics; Max is considered the grandfather of American ECT, and thinks it's perfectly okay to give the treatments to toddlers!)
Richard Abrams (Somatics, plus writes the bible on ECT)
Charles Kellner (Somatics, Mecta)
Harold Sackeim (Mecta)

ECT Statistics

If you're confused by the studies, read the statistics. You can read the original numbers as collected and make your own conclusions. Unfortunately, only a few states collect data on ECT. ECT activists are demanding that a federal law be enacted to make data collection mandatory. As it stands, even the statement you hear constantly, that "100,000 to 200,000 persons each year undergo ECT" is simply a guesstimate. Nobody really knows, because data collection is not done.

If you would like to see mandatory recordkeeping concerning ECT, write your congress person and write to the FDA. Vermont just passed a new law that will require recordkeeping...so we're making progress!

Official Statements

Here you will find official statements from a variety of organizations and agencies. These statements represent "official" views on electroconvulsive therapy. You will also be able to read about the politics surrounding the issuance of some of these statements - some of these are highly controversial.

Others

Learn more about CTIP, The Committee for Truth In Psychiatry, the world's largest shock survivor organization. You can join online for free!

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Welcome to SHOCKED! ECT

This site is a comprehensive collection of information about ECT, electroconvulsive therapy (aka electroshock, shock therapy).

I started this website in 1995, after having had ECT myself. I had many questions that were not answered by my health care providers, and I have found that too often, patients are not given adequate information. This website is an attempt to bridge that information gap and to help you make a more informed decision.

I am not affiliated with the Church of Scientology, nor am I anti-psychiatry. Individuals with vested interests in the ECT industry continually make these claims, in attempts to divert attention from the real issues. I have repeatedly battled attempts to shut this website down, threats of lawsuits, hacking attempts, and more.

It is my goal to continue to battle all attempts to shut down Shocked! ECT and to work towards reform in the industry, more complete ECT research, as well as battle the use of forced ECT against patients who do not want to have ECT.

I hope that Shocked! ECT will provide you with enough information and support so that you may make a more informed decision about having electroconvulsive therapy. The choice to have electroshock is a personal one that should be yours, and should be based on a variety of sources and points of view about ECT.

Contents:

• Why I Created The Shocked! ECT Website
• Does Electroconvulsive Therapy Prevent Suicide?
• ECT and Non-Memory Cognition
• Effects of Stimulus Intensity and Electrode Placement
• Electroconvulsive Therapy Background Paper
• How Shock Therapy Works
• More Children Undergo Shock Therapy
• Patient Satisfaction With Electroconvulsive Therapy
• Shock Therapy Cuts Hospital Costs
• Shock Therapy: Positive and Negative Charges
• Shock Treatment!
• Shock Treatment Survivor Continues To Speak Out
• Speak Out Against Shock (ECT)
• Adverse Psychological Effects of ECT
• Bilateral and Unilateral ECT: Effects on Verbal and Nonverbal Memory
• Can ECT Permanently Harm the Brain?
• CHAPTER 13: Management of Patient's Post-ECT Course
• Chapter 2: 2.1. - Indications for Use of ECT
• Chapter 5. Adverse Effects
• Chapter 6. Pre-ECT Evaluation
• Chapter 8: Consent for ECT
• Continuation Pharmacotherapy in the Prevention of Relapse Following Electroconvulsive Therapy
• Debate Rages Over Safety of ECT, or Shock Therapy, Used on Elderly
• ECT and Brain Damage
• ECT and Informed Consent
• ECT Stimulus Intensity, Seizure Threshold and Seizure Duration
• ECT Studies, Statistics, Reports
• EEG Monitoring in ECT: A Guide to Treatment Efficacy
• Electroconvulsive Therapy During Pregnancy
• Electroconvulsive Therapy (ECT)
• Electroconvulsive Therapy for Schizophrenia
• Electroshock As Head Injury
• Forced ECT
• Online Audio and Videos on ECT, Electroconvulsive Therapy
• Participate In An ECT Evaluation
• Patients Often Aren't Informed of Danger of ECT
• Psychopathology of Frontal Lobe Syndromes
• Recommendations for Electroconvulsive Therapy (ECT) Consumer Guide
• Shock Treatment Victim Supports ECT Lawsuit
• What Is SAMe?

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Does ECT cause brain damage?

Dr. John Breeding gives testimony to the New York State Assembly hearings on electroshock, May 2001. Dr. Breeding says ECT *always* causes brain damage.

Writing in Nature, Dr. Peter Sterling says: ECT damage is easy to find if you look for it, and says that ECT practitioners don't find any memory loss because they don't test for it.

What do they really think?
In public, psychiatrists say that ECT is safe. But what do they say to each other?

What does ECT do to the brain?
An in-depth look at what the brain goes through during ECT.

Do neurologists know something the rest of us haven't yet figured out?

Does ECT cause brain damage?
This MD says yes, in an article on ECT and EEGs.

Can ECT permanently harm the brain? This article says it has, and can, cause permanent brain pathology.

Dr. John Friedberg, writing in the American Journal of Psychiatry, takes an in-depth look at the effects of ECT on the brain and questions, "Do we really want to offer brain damage to our patients?"

A lengthy chronology on epilepsy and ECT, something denied by the ECT industry. Yet there are many documented cases of ECT-induced epilepsy.

Psychopathology of Frontal Lobe Syndrome
This article from Seminars in Neurology details frontal lobe syndrome, which many neurologists believe is one of the side effects of ECT. The researcher explains how this injury is often difficult to measure clinically, but how damaging the results are to the person who has it.

Neuroscientist testimony on ECT brain effects
From Dr. Peter Sterling, a neuroscientist at the University of Pennsylvania School of Medicine, this remarkable testimony and review of the available studies on the effects of electroconvulsive therapy on the human brain. Analyzing years of data, including private communications with one of the leading researchers of our time on memory loss from ECT (Janis), Sterling strongly concludes that ECT does, in fact, cause organic brain damage, similar to that seen from the results of trauma or toxicity in the brain.

Neuropsychological assesment
This journal article from Dr. Alan E. Brooker, clinical neuropsychologist with the USAF, details the complexities of evaluating the function of the brain. What this shows is how extensive the measurements are when truly understanding how one's brain is working on a day-to-day basis.

ECT as head injury?
In a report for the National Head Injury Foundation, the case is made that ECT works by inducing the effects of head injury. This well-researched report highlights the work of many neurologists and psychiatrists who believe this is the mechanism of action of ECT, as well as case reports of patients. Included are some great tips on recovery.

Electroshock: Scientific, ethical and political issues
From Dr. Peter Breggin, this comprehensive article explains how ECT works as head trauma, and goes into the scientific, ethical and political ramifications of the controversial treatment. A Must Read!

Dr. Charles Kellner (Hall of Shame winner) says "There are now important carefully controlled studies with MRI brain scans before and after ECT showing conclusively that there is absolutely no structural brain damage." Here are those "carefully controlled studies." Judge for yourself. Are these proof of "absolutely" no brain damage?View the video

Quite a bit more on the issue of brain damage in the news section.

A new article about how ECT induces PTSD and what can be done to aid recovery, from David Armstrong. I strongly believe this is an effect of ECT that is almost always overlooked, so this is an important article to read! (PDF format - can get a free reader at Adobe.com if you don't already have it)

next: ECT and Informed Consent
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The Committee for Truth in Psychiatry, or CTIP, is a national organization of over 500 former electric shock patients. None of us was truthfully informed about the nature or consequences of this treatment before consenting to it, and we have pooled our experience-gained knowledge to provide truthful information about it for future psychiatric patients.

Over the years, many individual recipients of "electroconvulsive therapy" (ECT) (shock treatment) have related their personal experiences, verbally or in writing, emphasizing whatever aspects were most important in each one's special circumstances. What the CTIP has done as a group is to highlight and emphasize the common demoninators in the shock experience. Accordingly, though our members differ widely in the details of their own stories, including how they got into ECT and how much good or (more often) harm it did them, we can agree on the most certain effects of ECT and that future patients should be informed of them before they give their consent to it.

Following are the most important points we make:

• If a person is in a state of physical suffering of nervous origin, ECT will almost certainly relieve it temporarily. ECT relaxes the nervous system and the relaxing effect lasts from a couple of days to a couple of months. Sometimes people stay well after the relaxing effect has worn off, but, typically, they quickly relapse.

• Regardless of any beneficial effect, there is always a permanently deleterious effect on memory. This consists of erasure of a good deal of pre-shock memory and dimming of more, and it frequently includes also a permanent reduction in retentiveness for post-shock experience and learning.

• These two effects in combination---the temporary feeling of well-being and the permanent harm to memory---imply that ECT "works" by damaging the brain. These are the classic symptoms of acute brain injury by any means---strokes, asphyxiation, concussion, carbon monoxide poisoning, etc. In all these events, the patient feels very well for a while but can't remember. If further evidence were needed of the principle at work in ECT's beneficial effect, it could be noted that the memory loss from ECT has always the distinctive pattern of brain damage forgetting (recent memories hardest hit) and that ECT is sometimes followed by other brain damage phenomena (examples common among our members are impairment of sense of direction and a touch of aphasia, or difficulty saying the words you meant to say).

As a vehicle for communicating these few salient points about ECT to future patients, we have incorporated them (along with other information) in a model ECT informed consent statement which we should like to see sponsored by the FDA or some governmental body. All CTIP members have endorsed the statement.

Origin, History, Format and Future

Our Committee was formed in l984, with 17 founding members, to participate in the Food and Drug Administration's regulatory proceedings concerning ECT.

FDA had classified the ECT device or shock machine in the highest risk class of medical devices, Class III, which classification earmarked ECT for a safety investigation; and the American Psychiatric Association (APA) had subsequently petitioned FDA to reclassify the device to Class II, which action would constitute recognizing ECT as a safe treatment without an investigation. The FDA was preparing to grant the APA's petition when the CTIP came in to oppose reclassification and to press for an investigation. We were confident that an impartial scientific investigation would confirm in physical terms what is apparent from ECT's emotional and memory effects: that it is inherently brain damaging.

Throughout the rest of the 1980s, the CTIP both enlarged its shock patient membership and also became the central contact for other individuals and organizations who urged an FDA investigation of shock treatment, including all fifty of the state Protection and Advocacy agencies.

Expansion of the CTIP was based on its informed consent statement. Any former shock patient who endorses it is a member. Membership imposes no duties or dues, but every endorsement stregthens the patient voice. And since we were bound together by agreement on the fundamental of the shock experience, we could operate without elected officers. Any member who chose to be active could speak, write, or deal with the FDA in the name of all.

With only such an informal kind of organization, we managed for six years to forestall action toward reclassification. Ultimately, however, the FDA bent to the stronger pressure from the psychiatrists and published in the Federal Register of September 5, 1990 a "proposal to reclassify" the ECT device to Class II. Since then, the classification (and investigation) have been "on hold", with no reclassification or investigation having yet taken place.

Regardless of when or in what direction the FDA may move, the CTIP is continuing to work for truthfully informed consent. The problem we alone address is that patients throughout the country are routinely misinformed and misled as to the results to be expected from shock treatment. At the same time, regulatory actions concerning ECT are under way in various state and local governments, instigated in some cases by ex-patients and in some cases by the electroshock industry. In any of these arenas, the opportunity exists for CTIP members to step forward and push for a requirement for truthful information, for they speak with the authority and credibility of a concerted voice of experience---a voice which grows stronger with the addition of each new member.

If you have had ECT, and if you would like to help protect future patients from consent by deception, we hope you will add the weight of your endorsement to our proposed ECT informed consent statement. Both electronic and snail-mail versions of the statement and membership form are available. If you have questions, please call or write the CTIP Director, Linda Andre, at PO Box 1214, New York, NY 10003, phone 212 NO-JOLTS.

Join CTIP online now!

Notice: Just to straighten out people who are confused: CTIP is NOT ect.org, and ect.org is not CTIP. They are two totally separate organizations. I am Juli Lawrence, and I run ect.org myself. There is no corporate sponsor and no men in black helicopters running things behind the scene (Dmitri is the black godwizard behind the curtain). Same deal with CTIP, except that it's run by Linda Andre and founded by the late Marylin Rice. I, Juli Lawrence, am a member of CTIP and offer this online information about it (plus the join form) as a service to electroshock survivors who wish to join. I consider Linda Andre a very dear friend of mine. I just wanted to clarify that this is not the official website of CTIP because a lot of people confuse this point.

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Welcome to Shocked! ECT. Even though I sometimes take a lighthearted approach to the issue of electroconvulsive therapy (ECT), I consider it a serious issue, often shrouded in misinformation.

You will find information that is pro and con on the topic of ECT. I leave it to you to weed through the materials and choose for yourself. I hope that you find this information useful, and if you are considering ECT, you will have made an informed choice. As an ECT survivor, I wish you the best, and a full recovery from the beast known as mental illness.

I created Shocked! ECT in 1995 after having had ECT myself the year before and having a very bad result. It started simply, a way of sharing information with others who were searching for answers. It's grown into an extensive website with what I hope is comprehensive information that will offer support and provide some of the answers to many of your questions.

I receive a lot of email every day, from persons considering ECT, loved ones, and persons who have had ECT and don't understand what happened. They were given promises, and those promises were broken. Yet it never fails to astound me when I receive email full of the lies the industry continues to tell. I absolutely swear that out in the field, in modern day civilization, psychiatrists are telling their patients that ECT is the miracle cure, it will cure your mental illness, your migraines, and even Alzheimer's Disease. (That was even testified as fact in a court of law, and swallowed by a US judge, who then ordered forced ECT on a woman in her 80s.)

I am called many things by the ECT industry and proponents - a Scientologist, a nut case, anti-psychiatry zealot.

I am none of the above. I am a woman who was severely depressed (re-diagnosed as bipolar disorder during the ECT treatments) and had ECT in 1994. The ECT, according to my mother, lifted me from a depression into a brief silliness (the euphoric high that typically follows ECT), quickly followed by an even worse depression than before. And it left me with severe memory loss, and I believe some cognitive damage.

I'm interested in the people who say "But you're so articulate now, how could it have possibly been destructive?" My answer: You do not know me. You do not know what I was like before I had the ECT, and you do not know what I am like now. Do not pretend that you know what I feel, what I think or who I am. A few words on a website does not give you a picture of me, other than the picture I *choose* to present in public. Most people who know me, other than those EXTREMELY close to me never even knew I was depressed. I have a public face, and a private face, and the two are very different. I work very hard at maintaining the public face, and I have worked hard to recover from a very low point. I have never said I was brain dead, simply that there was damage.

It took me a year to emerge from the fog that resulted from the ECT. And it's taken six years to recover to the point that I am able to fully articulate what has happened. I have spent the last years reading the research, including the studies that ECT experts use to promote the treatment. Day by day, I grow more convinced that ECT is not an effective treatment, and that it does little more than provide a brief respite from depression, followed by despair and hopelessness.....and potential damage to the brain.

This website is not an attempt to dissuade anyone from having ECT. If you have chosen to have the treatment, I support your decision and wish you well. If you've come looking for information, I sincerely hope that you will find genuine sources of information presenting all sides of ECT, not just the public face that the industry presents. However, you will find plenty of pro-ECT information here, because I think it's important to look at this from every angle.

Yes, there are anecdotal stories that ECT is a miracle cure. And those are trotted out continually when proponents of the treatment try to deflect any negative information. Yet, when former patients come to the forefront to discuss their bad experiences, the proponents say their concerns aren't valid, that anecdotal information isn't worthy of recognition. Well, folks, you can't have it both ways. I believe that if you're going to listen to anecdotal information, you must listen to both sides, not just the "ECT saved my life" viewpoint. On the other hand, I do believe it's important to hear the happy endings as well. They are important. All of the voices of ECT are important, and should be heard...including mine.

I have been threatened and I have been harassed because of my views. I have had emails from fanatics that included viruses; pictures of mutilated animals with threats that I'm next; name calling (Scientologist, as well as words that are offensive to women); gifs saying f*** you wh***; and "orders" telling me to stop what I'm doing. People are now on notice that, from this point on, all emails like these will be publicly posted. You will see various threats of lawsuits posted around the site, and I will post all emails containing legal and any other kind of threat.

I will not submit to the powers that be, and I will be heard. I am continually called a Scientologist, and it makes me angry. I don't believe that my religious beliefs are anyone's business but my own, but for the record....I was raised a good Presbyterian and if I went to church today, that is the church I would choose.

---

I do have some goals regarding ECT and those include:

1. Regulation. As it stands, this treatment is not regulated. Devices are not tested until they are used in practice. And as we've seen with the recent MECTA lawsuit, consequences can be disastrous. Moreover, there's been no recall of this machine. How many of these machines are out there still being used?

I want statistics kept in every state. Currently, only four states - California, Massachusetts, Colorado, and Texas - maintain any sort of record keeping. Groups like NAMI and the APA oppose this, saying it adds a layer of red tape. Bullshit! It gives data to researchers on the number of patients receiving ECT, complication rates, and demographics. We don't even know the number of patients having ECT...any figures are estimates only.

Even very strongly pro-ECT doctors are recognizing that ECT treatment is a free-for-all. With some regulation, perhaps there would be standards, rules, and accountability instead of what is now nothing more than haphazardness.

2. Informed consent. Patients have the right to know the full risks, not a watered-down version that the kinder, gentler ECT of today is without any risk. In public, doctors say memory loss from ECT and cognitive damage doesn't occur. In private, it's accepted as fact, and studies are done to find drugs to lessen this. The truth beforehand, IMO, would result in better outcomes for patients. They would know *before* ECT that they might have substantial, permanent memory loss, and would be able to make a valid choice that such loss outweighed continuing depression. And they should be told it is not 100 percent effective, nor do the effects last in most cases. They should be made aware of maintenance ECT *before* they undergo a series, not when their treatments have failed.

3. An end to forced ECT. This is not a treatment that should be given without consent. Enough said.

4. More research into the lasting effects of ECT. ECT proponents claim that studies showing brain damage and permanent negative effects are out of date. But they are the only studies that exist. Let's do more research into this - the funding is there. Promises are not being kept.

I certainly don't want to believe that the very people we entrust with our health would deliberately harm us. But in the last years of intense research, in talking with thousands of ECT patients, I do believe that we, the public and consumers, are not being told the full truth. Whether that's out of a misguided, paternalistic attempt to do what's "best" for the mentally ill, who don't know any better, or whether it's financial, I can't say for sure. I suspect it's a combination of the two.

I think the doctors on the front line, for the most part, are sincere in their belief that they are helping us. And certainly in some cases, patients have credited ECT with saving their lives. Their views are every bit as important as those people who say ECT has ruined theirs.

Quite often, people charge that I'm just an anti-psychiatry zealot, someone out to deny lifesaving treatment to those in need. I am neither anti-psychiatry, (I still see a psychiatrist every other week) nor am I out to ban electroconvulsive therapy. I do want it regulated, and I want my end of the spectrum, someone who has been harmed by ECT, recognized.

I had ECT in July 1994 and this is my experience. I am one of many.

Honestly, I don't remember most of what I'm going to tell you. It's based on stories from family and friends, and from writings in my journal.

I was suffering a severe depression, and my psychiatrist, like so many others, felt the antidepressant medications weren't working. He had been pushing for ECT for months, but I resisted. He told me the "new and improved" ECT was nothing like the ECT of the past. They now used unilateral instead of bilateral, and a lot less power. He engaged my family in the fight, and they joined him in encouraging this treatment.

Finally, according to my journal, my psychiatrist gave me an ultimatum. Have the ECT or get lost. This wasn't force, but it certainly was coercion. My feelings were so clear, as evidenced in my journal:

I feel like I'm going to die. The blackness surrounds me and there's no way out. Today I asked Dr. E if I could try a couple of drugs I'd heard about from Dr. Goldberg, but he yelled at me. Said he didn't care how the hell they did it at Columbia. This is how we do it here. And he told me I had to have ECT, or he wanted me out as his patient. I don't have a choice anymore. No other doctor will take me. I'm such a bad patient. Hard to treat. No one wants that. They want a patient who will cheerfully take her Prozac and get better. I fail, even at depression. So I guess I'll have the fucking ECT. Nothing left to try. It worries me, but at least it will work, and get rid of this black cloud that is swallowing me whole. Let's electrocute that part of me, sentence it to death, and let my old self reemerge. Dr. E finally wins this round.

And so I was given a series of bilateral ECT treatments. Apparently they talk a good talk about unilateral, but in reality it's not used that much. In my dealings with so many ECT patients, I've only run into one person who actually had unilateral. And it didn't help his depression at all.

Frankly, I don't remember a thing. I was in the hospital for the entire time. Each day, according to accounts from others, I had a bad headache.

For one day, I refused to speak any English, my native language. I spoke only Russian, and they think I was cussing out the doctor, due to the intensity of my voice and body language.

---

I tried to fix my mother up with a man (patient) whose pants kept falling off. Then I gave him a pair of my sweatpants. My mother was not amused, although the rest of my family thinks it's hilarious.

My aunt brought me some kitchen towels and placemats with kittens on them. I thought they were cute and thanked her. This is now a joke, although it's more tragic than funny, IMO. Each day, I would see the items and say, "Oh, aren't those cute. Where did they come from?" My mother or aunt would tell me my aunt brought them. That was a daily event, and continued for weeks after I was home. For weeks, I would ask, "Oh, aren't those cute. Where did they come from?" when I saw them on the table.

The worst of all is that I apparently gave my phone number to several patients. One was a drug dealer, and he called me several times, saying I had given him my number in hospital, trying to set up drug deals...that I wanted to buy crack. I've never used crack in my life. I admit that I occasionally indulge in a toke or two of pot, but I certainly would never attempt to buy it from someone I didn't know.

I would get calls from men, saying I had consented to go on dates with them, and got one from a fellow who said I told him he could move in with me. I have no idea who these people were, except that I'd given my number to them in the hospital. (My number was unlisted.) From the conversations, I don't think I ever met any of them outside the hospital. I sure hope not.

Those calls continued until the day I moved to a new town. I've since heard from several ECT patients who have done similar things.

The spring before ECT, I had taken (apparently) a few trips to New York City, to see my then-boyfriend. He and I are still friends and talk by phone occasionally. I have absolutely no memory of those trips, although from the smiles on my face in pictures, I apparently had a wonderful time. The only proof I have of those trips is plane ticket stubs, photos and conversations with the gentleman. He and I have talked many times, and I have to fake it, pretending I remember what he's talking about. (He didn't know I had ECT...he was - very smartly - against it.)

Recently, I talked to him, and he asked me about something I'd apparently purchased on one of my NY trips . To this minute, I'm confused about it. I can't find the item, and have no memory of ever having it. I still have some boxes at my aunt's house, so perhaps it's there. But it's so bothersome to know that I have no memory of ever having bought or owned it.

I've lost about two years of my life from memory loss...approx. a year and a half before the ECT, and about 8 months following. It's just gone. The ECT industry says that I'm mistaken. Some say I'm a Scientologist, as if my religious belief would cause me to misunderstand what happened to me. I am offended by that, and I am offended that I continually have to publicly proclaim what my religious beliefs are.

The memory loss is heartbreaking because I should have some wonderful memories of my NY trips. And I'm sure there are many other good times in there. But I don't remember them.

What hurts the most is the scorn I receive from the ECT industry, from the doctors who make their living by this, from NAMI, and from the APA. They simply dismiss my complaints, as they deny the memory loss of so many others. It's bad enough to have the loss, but then to be told I'm lying, or over exaggerating, or misunderstanding - it's horrible. They just say it didn't happen.

Or that I'm a Scientologist.

But it did happen. I live it every day. And I'm a Presbyterian.

(I have removed another story concerning my ECT at the request of those involved.)

Let me again be very clear. I am pro-choice on all things, and that extends to ECT. I absolutely support the right of anyone who chooses ECT...or chooses something else.

Had I been told honestly that I might lose a portion of my memory, and that I might suffer permanent cognitive damage, I would not be angry as I am today. It would not have been so devastating to me. I would have made a more informed decision.

Juli Lawrence
ECT survivor

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Anxiety disorders research going on at the National Institute of Mental Health (NIMH).

More than 19 million adult Americans ages 18 to 54 have anxiety disorders. The National Institute of Mental Health (NIMH) supports research into the causes, diagnosis, prevention, and treatment of anxiety disorders and mental illnesses. This research is conducted both in the Institute's intramural laboratories and in biomedical research institutions across the country. Studies examine the genetic and environmental risks for major anxiety disorders, their course, both alone and when they co-occur with other illnesses such as heart disease or depression, and their treatment. Scientists seek to discover the basis of anxiety disorders in the brain and their effects on the fu and other nctioning of the brain and other organs. The ultimate goal is to be able to cure, and perhaps even to prevent, anxiety disorders.

Types of Anxiety Disorders

The term anxiety disorders encompasses several clinical conditions:

• panic disorder, in which feelings of extreme fear and dread strike unexpectedly and repeatedly for no apparent reason, accompanied by intense physical symptoms
• obsessive-compulsive disorder (OCD), characterized by intrusive, unwanted, repetitive thoughts and rituals performed out of a feeling of urgent need
• post-traumatic stress disorder (PTSD), a reaction to a terrifying event that keeps returning in the form of frightening, intrusive memories and brings on hypervigilance and deadening of normal emotions
• phobias, including specific phobia a fear of an object or situation and social phobia a fear of extreme embarrassment
• generalized anxiety disorder (GAD), exaggerated worry and tension over everyday events and decisions

Research Progress

NIMH research has led to advances in understanding the causes of these disorders and how to treat them. Today, the majority of people with panic disorder and OCD improve significantly within weeks or months of getting proper treatment. The same is true for people with phobias. And many people with PTSD and generalized anxiety disorder also make substantial improvement with treatment.

As the search continues for better treatments, NIMH is harnessing the most sophisticated scientific tools available to determine the causes of anxiety disorders. Like heart disease and diabetes, these brain disorders are complex and probably result from the interplay of genetic, behavioral,developmental, and other factors. Scientists in a number of disciplines are trying to identify risk factors that make certain people prone to these conditions.

Studies of the Brain and Anxiety Disorders

Studies in animals and humans have focused on pinpointing the specific brain areas and circuits involved in anxiety and fear, which underlie anxiety disorders. Fear, an emotion that evolved to deal with danger, causes an automatic, rapid protective response that occurs without the need for conscious thought. It has been found that the body's fear response is coordinated by a small structure deep inside the brain, called the amygdala.

Neuroscientists have shown that when confronted with danger, the body's senses launch two sets of signals to different parts of the brain. One set of signals, which takes a more roundabout route, relays information to the cerebral cortex, the cognitive part of the brain that explains in detail the threatening object or situation such as a big black car heading for you as you cross the street. The other set of signals shoots straight to the amygdala, which sets the fear response in motion, readying the body for quick action before the cognitive part of the brain comprehends just what is wrong. The heart starts to pound and diverts blood from the digestive system to the muscles for quick action. Stress hormones and glucose flood the blood stream to provide the energy to fight or flee. The immune system and the pain response are suppressed to prevent swelling and discomfort, which could interfere with a quick escape. And, as a preventive measure for similar confrontations in the future, the learned fear response is etched on the amygdala.

How Does this Learned Fear Response Turn into an Anxiety Disorder?

One or more fearful experiences can prime a person to respond excessively to situations where most people would experience no fear such as in the supermarket or only moderate nervousnesss such as giving a speech. In anxiety disorders, the deeply etched memory can result in hypervigilance, making it hard to focus on other things, and leading to feelings of anxiety in many situations. In people who have survived overwhelming trauma and developed PTSD, for example, even mild reminders of the trauma may initiate the fear response. People with specific or social phobia often completely avoid their feared situation. In panic disorder the chronic worry about having another attack may lead to stress-related conditions such as heart problems and irritable bowel syndrome. In people with generalized anxiety disorder, the chronic anxiety may prevent them from focusing on even the simplest tasks. The amygdala, although relatively small, is a very complicated structure, and recent research with animals suggests that different anxiety disorders may be associated with activation in different parts of the amygdala.

Brain Findings Point the Way to New Approaches

The amygdala findings may have important implications for treating people who suffer from anxiety disorders. If, as studies suggest, the memories stored in the amygdala are relatively indelible, one aim of research is to develop therapies for anxiety disorders that increase cognitive control over the amygdala so that the "act now, think later" response can be interrupted.

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Clinical Trials of New Treatments

Anxiety disorder treatment studies have been designed so that pharmacological and cognitive or behavioral therapies can be tested head-to-head. In one clinical trial, two separate centers are examining how well drug and behavioral therapies work separately and together in the treatment of OCD. Data collected from this study should help scientists determine if one of the treatments works better than the other in decreasing obsessions and compulsions.

In addition, the direct comparison of the combined treatment with the medication will provide much needed information on whether the high relapse rate associated with stopping the drug can be reduced. The comparison should also help determine if the medication can enhance compliance with the behavioral treatment.

Many of the current medications for anxiety disorders affect the neurotransmitter serotonin. New treatment approaches are examining drugs that affect other neurotransmitters and brain chemicals such as GABA, gamma-aminobutyric acid, and Substance P. A new research tool, magnetic resonance spectroscopy will help scientists measure brain levels of GABA and other substances.

Researchers are also looking at combinations of medications that may have a synergistic effect in panic disorder, for example, studies are underway to determine if an antidepressant medication that affects serotonin works better when used with the new antianxiety drug buspirone.

The Role of Cognitive Factors

Cognitive factors play a significant role in the onset of anxiety disorders. People at risk for these disorders tend to be overly responsive to potentially threatening stimuli. Studies are underway to look at how people with anxiety disorders process information. The goal is to see which cognitive capabilities are affected by anxiety and which are free to handle other information. Data collected from the studies should help researchers determine more about the brain pathology associated with anxiety disorders.

Early Life Stress May Play a Role

In animals, NIMH-funded researchers are studying how stress, especially when it occurs in early life, affects how adverse events are handled later in life. Rat pups who are subjected to the stress of being separated from their mothers for several minutes early in life have, months later, a much greater startle reaction to a stressful event than pups who were never separated. This line of research may help scientists learn how genes and experience affect who is vulnerable and who is resistant to anxiety disorders.

Anxiety Disorders and Hormones

Another area of research has led to the discovery that anxiety disorders are associated with abnormal levels of certain hormones. People with PTSD, for example, tend to be low on the stress hormone cortisol, but have an overabundance of epinephrine and norepinephrine, which could be why they continue to feel anxious after the trauma. In addition, they tend to have higher-than-usual levels of corticotropin releasing factor (CRF), which switches on the stress response and may explain why people with PTSD startle so easily. Scientists are researching ways to correct hormonal imbalances and bring symptoms under control.

The Importance of Imaging Tools

Scientists may be closer than ever before to creating therapies that are specifically targeted. NIMH studies use imaging tools to allow researchers to peer into the living brain and watch the amygdala, the cortex, and other areas of the brain at work. They can identify abnormal activity when a person has an anxiety disorder and determine if medication or cognitive and behavioral therapies help to correct it.

Recent studies of the brain using magnetic resonance imaging showed that people with OCD had significantly less white matter than did control subjects, suggesting a widely distributed brain abnormality in OCD.

Imaging studies are also looking at how brain structure may be related to PTSD. A part of the brain involved in emotion, called the hippocampus, tends to be smaller in some people with PTSD. NIMH-funded researchers are trying to decipher whether that is a result of extreme stress responses related to the trauma or whether people who already have a smaller hippocampus are more prone to PTSD.

NIMH Anxiety Research and Genetics

Research evidence points to genetics as a factor in the origin of anxiety disorders. Scientists have recently discovered a gene that influences fearfulness in mice. And NIMH-supported studies of twins have found that genes play a role in panic disorder and social phobia. Although genes help determine whether someone will develop an anxiety disorder, heredity alone can't explain what goes awry. Experience also plays a part. In PTSD, for example, the trauma is the experience that triggers the anxiety disorder; genetic factors may help explain why only certain individuals exposed to similartraumatic events develop full-blown PTSD. Researchers are honing in on the degree of influence that genetics and experience exert in each of the anxiety disorders information they hope will yield clues to prevention and treatment.

Some Cases of OCD Linked to Earlier Infection

NIMH studies of obsessive-compulsive disorder in young people have shown that the experience of having a streptococcal bacterial infection may lead to the development of crippling obsessions and compulsions. It appears that a genetic vulnerability, coupled with rheumatic fever, is associated with some cases of OCD. Preliminary evidence indicates that special treatment for the infection improves or cures the OCD.

The Broad NIMH Research Program

In addition to studying anxiety disorders, NIMH supports and conducts a broad based, multidisciplinary program of scientific inquiry aimed at improving the diagnosis, prevention, and treatment of other mental disorders. These conditions include bipolar disorder, clinical depression, and schizophrenia.

Increasingly, the public as well as health care professionals are recognizing these disorders as real and treatable medical illnesses of the brain. Still, more research is needed to examine in greater depth the relationships among genetic, behavioral, developmental, social and other factors to find the causes of these illnesses. NIMH is meeting this need through a series of research initiatives:

• NIMH Human Genetics Initiative
  This project has compiled the world's largest registry of families affected by schizophrenia, bipolar disorder, and Alzheimer's disease. Scientists are able to examine the genetic material of these family members with the aim of pinpointing genes involved in the diseases.
• Human Brain Project
  This multi-agency effort is using state-of-the-art computer science technologies to organize the immense amount of data being generated through neuroscience and related disciplines, and to make this information readily accessible for simultaneous study by interested researchers.
• Prevention Research Initiative
  Prevention efforts seek to understand the development and expression of mental illness throughout life so that appropriate interventions can be found and applied at multiple points during the course of illness. Recent advances in biomedical, behavioral, and cognitive sciences have led NIMH to formulate a new plan that marries these sciences to prevention efforts.

While the definition of prevention will broaden, the aims of research will become more precise and targeted.

Source: NIMH, Dec. 2000

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