After a month at home, she returned to work. Although her associates appeared familiar and she remembered their names, she found the work unfamiliar. "I was terrified. I've never been a crying person, but all my beloved knowledge, everything I had learned in my field during 20 years or more, was gone. I'd lost the body of knowledge that constituted my professional skill. I'd lost everything that professionals take for granted."
The preoccupation with dental pain and feelings of ugliness were now gone, replaced by a preoccupation with memory. She retired on medical disability. "I mean, I mustn't give the impression that my experience with electric shock was a total disaster. There have been some beneficial results. For one thing, my physical health has improved. I am beginning to eat again, my digestion is much improved, and I have no trouble with sleep. I also feel emotionally relaxed. And I've lost a lot of bothersome inhibitions."
A malpractice action against the psychiatrist who administered ECT failed. She sought help in hypnosis and psychotherapy and successfully organized an anti-ECT advocacy group, the Committee for Truth in Psychiatry. She attended open meetings of psychiatrists and complained that ECT had been administered without prior explanation and that the price was a loss of memory. She read and critiqued the ECT literature. At a meeting concerning progress in ECT research in 1982, she debated the literature with ECT experts, citing articles correctly. She had no relapses of her depressive illness.
After her death, her advocacy group was led by another patient who also complained of persistent and devastating memory loss after a course of ECT. Her malpractice suit against the psychiatric hospital failed. Before ECT, she had been hospitalized for multiple suicide attempts, threats that did not materialize in her subsequent history.An enabled lawyer
Another patient, a Vermont lawyer, described her personal journey through recurrent depression and resolution with ECT in an article in the Journal of ECT in June 2000.7 Although the article does not offer the usual details of a case study, she writes that she suffered episodes of depression that responded to medication in 1987 and 1989. A relapse in 1993 did not respond to medication, and from late 1995 through early 1996 she received 33 ECT treatments (initially unilateral and then bilateral).
She described the experience: "Occasionally, I feel bitter. More often, it is a sadness, a sense of deep loss that may not even have had to happen. It is a grief that keeps deepening over time, because there is hardly a week that goes by that I do not discover yet another part of my life that is lost somewhere in my memory cells."
She continued: "Despite that, I remain unflagging in my belief that the electroconvulsive therapy I received . . . may have saved not just my mental health, but my life. If I had the same decision to make over again, I would choose ECT over a life condemned to psychic agony, and possible suicide."
Her memory loss was severe: "My long-term memory deficits far exceed anything my doctors anticipated, I was advised about, or that are validated by research." She had forgotten "hosting and driving Mother Teresa for a full day visit to Los Angeles in 1989; the dinner reception for my National Jefferson Award . . . with my co-honoree General Colin Powell."
About her recovery she wrote: "As the 6-month marker came and went with only partial recovery of my recollections for past events, my focus began to change. I was again not doing as well emotionally, which affected my positive attitude." A detailed research of the literature on cognition and ECT led to the conclusion: "I was completely stunned by the discrepancies I found. While multiple studies found any long-term amnesia to be extremely rare, informal accounts, advocacy group information, and newspaper exposés described extensive and broad-based risks.[9-11]"
After detailing her complaints of loss of memory, she offered the following: "I think that this lingering feeling of abandonment of care by the psychiatric profession, both as anindividual and in a deeper sense on behalf of my peers, is strongly related to the part of me that still feels so damaged by my memory loss."
Despite the severity of her complaints, she took an active interest in community affairs and participated in radio interviews.12 In 2002, she was elected to the Vermont House of Representatives. She brought a malpractice lawsuit for improperly performed ECT against the Vermont hospital. In a settlement, the hospital formally adopted Vermont's informed consent guidelines and agreed to make a new informed consent video available to all prospective ECT patients.Camelford and memory complaints in ECT
David and Wessely,1 and more recently Trimble,2 describe the elements that contribute to a somatoform disorder: an event perceived as traumatic, normal levels of body symptoms, persistent anxiety, endorsement of the association between trauma and symptoms by the professions, and the opportunity for litigation.
These elements are met in Camelford by the unpleasant community experience of sour, discolored drinking water; psychological symptoms of anxiety, problems in recall, and social difficulties in the home and workplace in a portion of the community; the experience perceived as trauma; consequences not excludable by experts; endorsement by some in the professions; and the drive for reimbursement. These elements endorsed a psychiatric illness that was accepted as likely by the community despite an absence of objective evidence.
The same elements apply to the complaints of persistent memory effects of ECT and direct our attention to a psychological rather than a biologic basis for the persistence of the complaints. Patients wake with headache, confusion, and widespread muscle aches, and the experience is seen as traumatic.
The ECT experience is publicly perceived as traumatic. The images in One Flew Over the Cuckoo's Nest, Titicut Follies, and A Beautiful Mind forcefully present the treatment as horrific. The public is frequently reminded that psychiatrists abuse their patients, the most recent being a story in the New York Times alleging brutalization of patients in Turkey with the use of unmodified ECT.13
The effects of seizures on memory are endorsed by the psychiatric profession.5 In the consent process, the risks acknowledge: "Patients often become confused and may not know where they are when they awaken. . . . Memory for recent events, mainly for the period of illness and the treatment may be disturbed. Dates, names of friends, public events, telephone numbers, and addresses may be difficult to recall. In most patients, the memory difficulty is gone within 4 weeks after the last treatment; but rarely the problems remain for months, or even years."
Psychologists assessed the difficulty: "It has also become clear that for rare patients the retrograde amnesia due to ECT can be profound, with the memory loss extending back years prior to the receipt of the treatment."14 The same essay averred: "Some patients experience profound memory losses due to ECT. Most ECT practitioners have encountered fully credible patients who are distressed by the magnitude of their persistent post-ECT amnesia."
A caveat, however, is entered after psychological examination: "Another complication is that some patients with persistent memory complaints following ECT have no treatment-related deficits."14 Indeed, "Most recent studies indicate that subjective memory improves following ECT."15Somatoform disorder
Michael Trimble, the British neuropsychiatrist at London's Institute of Neurology, offered a detailed history of hysteria in Somatoform Disorders: A Medicolegal Guide.2 Unexplained symptoms, inconsistent with known anatomy, physiology, or biology, have been a focus of medical practice for millennia. Belief in displaced uteri as the cause led to the term "hysteria." In the past century, psychodynamic and psychological principles redefined the syndromes as "somatoform" or "somatization" or "posttraumatic." "Hysteria" is now politically incorrect. Waves of classic hysteria are still frequent, however, in shell shock, chronic fatigue syndrome, and the Vietnam and Gulf War syndromes. In each instance, a physical explanation is sought, and when none is found, the psychological nature of the syndrome is emphasized. The illness is sustained by disability compensation. When the possibility of compensation is removed, the incidence of the illness goes down.2
Different expressions of hysteria are accepted in different social eras.16 The faints and "convulsions" of the Victorian era highlighted by the dramatic presentations of Charcot have become passé in the present era. We accept chronic fatigue syndrome, fibromyalgia, posttraumatic stress syndrome, pseudoseizures, and false memory syndrome as systemic disorders.
Complaints of persistent memory loss in otherwise well-functioning individuals after recovery from a psychiatric illness through ECT are best viewed as a conversion reaction or a somatoform disorder. The Camelford experience is a model for the complaints of ECT's profound personal memory losses.
Dr Fink is professor of psychiatry and neurology at the State University of New York at Stony Brook. He is the author of Electroshock: Restoring the Mind (Oxford University Press), founding editor of The Journal of ECT, and co-author of Catatonia: A Clinician's Guide to Diagnosis and Treatment and Melancholia: The Diagnosis, Pathophysiology and Treatment of Depressive Illness (Cambridge University Press).