" Well, what is the sense of ruining my head and erasing my memory, which is my capital, and putting me out of business? It was a brilliant cure, but we lost the patient."
These were the words of American author Ernest Hemingway to writer and biographer AA. Hatcher shortly before he took a shotgun and shot himself in the head in 1961.
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Hemingway committed suicide near the end of a series of psychiatric treatments - "Electro Convulsive Therapy" (ECT) and in a common language – Electro shocks.
Some argue that none of Hemingway's difficulties during his life – including a plane crash, World War I horrors, painful divorce and prolonged depression – failed to break him until the side effects of the psychiatric treatment came.
Electro Convulsive Therapy (ECT) has existed in the world of psychiatry for 80 years and is now considered the most effective and safe against life-threatening mental disorders.
The treatment is designed for patients with deep and chronic depression, severe psychotic and catatonic conditions and manic conditions.
According to professional literature, its purpose is to cause epileptic seizures by a series of electrical pulses, which produce a large electrical outbreak in the brain cells, and especially in the anterior lobe cells.
This electrical outbreak, according to the researchers, causes changes in brain function – it activates genes involved in the production substances that are secreted from the brain, such as serotonin, dopamine and norepinephrine, which they say are impaired in patients suffering from depression.
The treatment is actually given to those who have become resistant to medications when there is a suicidal or significant risk of harm to others.
Psychiatrists around the world recommend ECT and claim that even though the mechanism of action is unknown, the result in the field is that it is "working" and "proven."
However, there are also other voices of patients who have undergone treatment and claim to have experienced severe side effects.
There are various websites on the Internet, including support groups and testimonies of former patients and their families, including Internet petitions dealing with the requirement to intensify medical device supervision.
In addition, according to government documents dealing with the lengthy discussion on the issue of regulation by the official body dealing with the field the "US Food and Drug Administration" (FDA), It appears that there are thousands of reports of damage at various levels, some involving brain damage and even death. "This treatment has ruined my life", T. (50) describes in a broken voice, a Northern resident, a clinical psychologist in her training.
She was diagnosed with bipolar disorder also known as manic depression, a disorder in which patients move between feelings of "high" and inexhaustible vigor and deep depression.
After receiving various doses of a variety of medications and suffering side effects including gaining tens pounds in weight, eight consecutive nights of sleeplessness and muscle tremors – and since the medications only helped for few months, she was offered as the last resort, the ECT.
"I was told by the various psychiatrists I consulted, and from what I read on the Internet, that there is a possibility of a minor impairment in concentration and memory, that it is a functional and inorganic, that is, temporary, one that will last six months at the most. Only in practice – I lost entire parts of my life".
How was it manifested?
"My autobiographical memory was simply erased, as was my professional and general knowledge. I remember sitting with a psychologist two years after the treatment, seeing Freud's book on the shelf and realizing that the name was familiar to me. But I didn't remember a single detail of his theory that I studied for years. I forgot about formative events in my life like my wedding, my daughter's birth, places of residence, friends, family history, I even forgot about my late father and mother."
"Events like Rabin assassination and the 9/11 catastrophe I did not recognize even when I saw videos. That is, not only was the process of retrieval from my memory impaired, but also the process of recognition. At one point, I didn't even remember the way from our house to school and back to take my girl, and I needed babysitting to help me take care of her. I brought an au pair for nine months when I was being treated, because I couldn't remember how to do simple household operations like cooking and laundry, and even using a computer and cellphone."
And what is your current situation?
"Even today, five years later, I am unable to function and care for my child without the help of babysitting. Alongside the cognitive impairment, I suffer from the emotional trauma that accompanies me both days and nights."
You stopped in the 35th treatment, but you have stated that from as the beginning, you experienced significant damage. Why did you continue?
"I continued with treatments because I was repeatedly promised that these were normal symptoms that would pass and that there was no alternative in my condition. I became submissive and obedient. Even more, the cognitive impairment was so severe that I couldn't practice judgment".
It is estimated that over a million people worldwide are treated with ECT each year (of which about 100,000 are in the US), but the exact number of patients is unknown. According to data from the Israel Ministry of Health, in 2005 about 6,000 people were treated with ECT, however, at present there are no recent data. In the distant past, the treatment was performed without anesthesia and without muscle relaxants, patients suffered from convulsions and even bone fractures, currently, ECT is performed under full anesthesia and lasts up to ten minutes.
The treating team includes a psychiatrist, nurse and anesthesiologist. The patient is connected to a monitor to measure blood pressure, sturgeon (blood oxygen level) and heart rate, and to electrodes that monitor the electrical activity of his brain (EEG) Electrodes connected to a special stimulator are coupled by two methods, unilateral or bilateral, with the electrical stimulation being powerful (between 250 and 460 volts) but short (less than one millisecond in length). At the end of the procedure, the patient is monitored for recovery for about half an hour and released to his home.
As mentioned, despite the widely held view that it is the most effective and safe treatment, there are studies and experts who claim the outcomes of significant, and sometimes irreversible, damage as a result of the treatment.
Professor Harold Zackheim, who is considered a major researcher in the field and who has promoted the treatment of ECT, acknowledged that it took the psychiatric establishment time to consider the negative effects of the treatment. In 2007, Prof. Zakheim published a large-scale study that for the first time tracked a large sample of hundreds of patients from various centers across the United States and determined that the treatment of ECT could cause ongoing memory impairment and cognitive impairment, affecting patients' functioning. The procedure itself has undergone changes over the years, even regarding to how the electric current is transmitted to the brain (the type of electric wave), which the proponents of treatment say has reduced the side effects.
However, the fact that many variables exist in relation to its performance, as Professor Zackheim himself testified, is a disadvantage and a source of criticism, arguing that it is difficult to pinpoint the source of possible damages, and thus prevent them.
Over the years, the medical device through which the treatment is performed, did not require Pre-Market Approval, controlled clinical tests to demonstrate safety and efficacy (testing the treatment with a control group to evaluate its results).
This is due to economic, bureaucratic and ethical (a long process that could prevent access to the ECT treatment) reasons. The issue of the medical device supervision in this issue has drawn ongoing debate in the United States between the experts who are proponents for the treatment and its critics. Last year, the regulator ruled that the medical devices would be classified as having a "medium" risk level for treating depression and catatonia, while relying on research literature in the field, which proves to be of sufficient effectiveness and safety. This is to the discontent of patients claiming damages.
The demand for stricter supervision over how to treat and monitor side effects has given rise to protests on the network of patients and their families, to which thousands have so far signed. In this context, it should be noted that there is no limit to the number of treatments that can be performed, which raised a opposition in patients who claim long-term and irreversible damage as a result.
A similar case can be found in the story of California resident Sarah Hancock, which is leading a petition circulated online last month. Until about a decade ago, Hancock received a series of 116 treatments, and she claimed ongoing brain damage and neuromotor impairment, which led to speech problems. "As long as ECT is not standardized and strictly regulated with a strict regulation, doctors, nurses, medical staff, patients and their families will not be able to understand and take into account all possible risks of treatment," the petition reads.
Regarding the safety issue of the treatment, petitioners claim that "the use of the word 'rare' to describe the risk of brain damage and loss of memory due to ECT is misleading, since without a standard and universal protocol for supervision and performance, and without routine assessment and monitoring of every patient, there will be never be a real clear indication of the prevalence of brain damage.
This is in addition to the fact that, to date, researchers have never followed patients for more than six months from the end of treatment to detect or identify cognitive impairment". One of the key requirements of this petition is to conduct comprehensive pre-treatment and subsequent testing to detect adverse events ahead of time and prevent a condition of serious or irreversible damages.
T. says that the psychiatrist and staff, who performed her treatment, knew she was leaving them in a state of trauma, with a complaint of cognitive impairment, and yet no physical, emotional or cognitive status was monitored. "If any of them bother to make statistics, I wouldn't be surprised if I was considered a success", she says.
"Today I know that the protocol does not require follow-ups, so as far as I understand, I was no exception. The protocol in Israel also does not require extensive cognitive testing before treatment. In the absence of objective tests, including existing brain imaging technologies, for example, it is the word of the psychiatrist versus the word of the patient, and the way of the world is to believe doctors and not the "crazy ones."
For the past two years, T. has been engaged in extensive research on ECT and has been in contact with some of the world's leaders in the struggle – former patients and therapeutic professionals, some of them demand to ban the treatment. She said, "Everyone agrees that there is a need for regulation, which does not exist today". The campaign that T. is planning will be called "Power Outage" and she is currently setting up a Hebrew web site that will include all evidence-based research in the field, including legal progress.
Patients sign a consent form before performing the treatment.
"Correct. But not all possible side effects are included in the informed consent form. A year ago, Somatic – one of the companies that manufacture the device through which the treatment is performed – had to publish the list of side effects. Here are some that are not mentioned: motoric injury, aggression, heart complications, stroke, brain damage, pneumonia, coma and the highlight – the symptoms that the treatment is supposed to prevent, namely exacerbation of psychiatric symptoms such as mania, hypomania, depression, psychosis and increased risk of suicide".
And yet, on the other hand, there are many patients who claim that treatment saved their lives.
"Some also say that the cognitive damage done to them is significant, but worthwhile. For example, actress Carrie Fisher, Star Wars star, became addicted to ECT and also wrote a book about it. She became a presenter for the treatment but admitted that one of the reasons for writing the book was the significant impairment of memory and her desire to document her life".
What else did you discover during your activities in the field?
"As an activist, I am exposed to countless stories, personal conversations, and support groups of former patients. Almost everyone, as in my case, has not seen a psychiatrist who has seriously addressed their complaints about side effects. They experienced a painful door slam with no rehabilitation options. None of them have been warned about the side effects to the fullest, and most have experienced the awful feeling in which the therapist becomes blind to their reports and hangs the blame on the disease itself". Although psychiatrists try to shatter the stigma surrounding the treatment, claiming it is anesthetized and given muscle relaxation – precisely because of these substances, which raise the threshold for seizures, high electrical voltage is often needed, almost three times as much as it used to be. Furthermore, because the procedure includes so many variables and varies from one medical center to another, it is very difficult for psychiatrists to conduct reliable research to evaluate it. And just as they do not know how the treatment mechanism works, they also do not know how to predict damages or prevent them."
P. (48), a Northern resident, remarried and father of three, has a successful hospitality and hotel business. In the past he suffered from severe depression, was treated with medications and became resistant to them "The first episode was in 1997. I got Effexor for six months, got back to myself and was fine," he says. "In the second episode in 2006, I had a very strong episode, they got me off the Effexor and I had experienced a variety of treatments. At one point they stopped making an impact and I felt terrible".
Twelve years ago, he was treated with ECT, and at the end of a series of 12 treatments, he decided to stop. "I ran away as if it was fire," he says. "If I could go back in time, I wouldn't sign the consent form. I felt worse. My condition got worse; I started having terrible nausea that was driving my body crazy. As time went by, I felt that my personality structure was changing, that I was becoming indifferent and slow. At one point I have noticed that I had to use lists to be able to remember or understand what I was doing. Customers were badly hurt by my behavior. My wife left me. Depression is a devastating disease, you lose everything. I couldn't function as a father, as a husband, the financial situation was bad, the burden of divorce was unbearable".
Today you returned to Effexor. Is it possible that the treatment of ECT helped?
"On the contrary, the treatment did not make any difference which was the reason why we tried more medication. It took a long time until I came to the same professor who made the decision to return me to the first treatment, at a higher dose. That's what helped me. Furthermore, since then until today, 12 years later, I must immediately write down everything that happens, otherwise I forget. Alongside this, I have a severe impairment in concentration and attention, and every learning process is accompanied by a huge effort."
Were you aware of the possible side effects of treatment?
"Anyone with severe depression is ready to do anything and will easily sign anything to get him out of this unbearable nightmare. But the cost of the treatment can be devastating. Luckily, I got off easy. I rehabilitated myself, and I'm functioning well. Ultimately, it took me quite a bit of faith to get out of the situation. I believed that there must be a way to get back to myself, and I learned to value what I have in life."
Avi, (47), also describes a severe memory impairment following a single treatment of ECT. At age 30, he was diagnosed as depressed, with a background of a borderline personality disorder. He claims that in 2013 he was prescribed a medication that was successful, but not for long. "I thought I was successful, I had a bakery business, I thought I was going out of the crisis, but after a few months the depression returned. I became sick again and stopped functioning."
Who recommended you the ECT treatment?
"It was my initiative to do it. I heard it helped a lot of people, and I wanted to find a quick solution. I read that it could impair memory, but I couldn't believe it. In 2014, I was admitted to a halfway house in the North, where I got ECT treatment. I woke up from anesthesia in a difficult physical condition. I felt I was doing something terrible to my body and asked to stop. About two weeks later, while I was in Tel Aviv, my brother asked me to bring something to Holon. I remember being shocked because I couldn't remember the general direction. My English was never really good, but even the little I knew was simply erased. In case I will travel abroad in the future, there is no way I will be able to communicate".
Did all this happen from just one treatment?
"Definitely yes. I used to be one who roams all over the country, I knew all the roads and routes, I was a walking Waze, my sense of orientation was very good. Mostly I had a sense of independence. Today I am a dependent person. If I need to get to new places, I need another person's physical escort. I can't get anywhere new alone. I used to go every week to my mother's house, from Netanya to Rishon Lezion. Today, even with Waze, it's hard for me and I get lost".
Did you report these side effects?
Yes. The doctors do not think it is related to ECT, but to my illness. The infuriating fact is that I used to manage my business in the past even when I was depressed – barely, but I did – today I do not even remember how to do all these things. I have no ability to fight for a solution to the situation. I have no choice but to accept that there is no turning back and that the damage has already been done".
For Maya (Maika) Ferrer, 39, a Chef and a successful caterer, painter, and sculptor, the ECT was a real trauma.
"I was a nature child, and all I wanted to do was run in the fields and create", she says, "When I went to first grade, the school structure, the blackboard and notebooks turned me off. I felt trapped; I stopped communicating with the environment. I was diagnosed depressed; I have suffered from an obsessive-compulsive disorder and weight loss. I quickly reached the door of psychiatry. I have tried every possible medication in quantities that could kill me and suffered from side effects that impaired my functionality. Beyond being obscure, I suffered from muscle weakness and lost my appetite, which further contributed to my weight loss".
Born in town of Manof in the Western Galilee, a daughter of a textile engineer and an artist who immigrated from South Africa.
"It is important to me that people who suffer from mental problems should not be ashamed. They are not guilty of their condition and they deserve dedicated and sensitive therapists, who will listen to them. It is important to me that they know that they are not alone in the battle. Four years ago, I had an episode of depression and I was hospitalized. I was offered ECT. I don't know if it helped me get out of the depression, but I can say for sure that the physical trauma was terrible. It is claimed that the treatment does not cause suffering, but it is simply not true. When you wake up you feel the physical trauma. I remember myself in a wheelchair, with a massive headache, an excruciating pain. You feel like your body is just electrocuted, it's a terrible feeling. To this day I have cognitive impairment, I have lost entire parts of my life. Many times I met people who knew me, and they were disappointed to find out that I just didn't know who they were, couldn't remember them."
Are you sure the memory impairment is related the ECT treatment?
"Yes. This is an ongoing injury that started after the treatment, and I suffer from it to this day. I didn't complain. When you come out of the hospital after such an experience, the last thing you have the energy to do is fight, and frankly, I also didn't think anyone would listen to me. I do not want to imply that I am against the field of psychiatry. I personally found the psychiatrist who helped me get out of my condition and now I am almost completely without medications. But she was one of the dozens I met during my life. Most importantly, I am here now, alive and happy, happily married and expressing myself. Without my family, I would not be sitting here with you today. I couldn't have gone through this journey without their support. I find it hard to imagine what it means for others to go through it without support."
Senior psychiatrist Dr. Peter Breggin, a resident of New York State, is one of the leading opponents of ECT. Breggin has set up a web site that includes and updates more than 150 scientific studies and documents dealing with the procedure and its implications, arguing that this treatment should be banned because it inevitably causes brain damage, which in some cases is irreversible.
"The process results in an epileptic seizure, sometimes more powerful than the Grand Mal ,Tony Clooney attack, attributed to epilepsy patients and which includes a sudden loss of consciousness), a temporary coma and often a flattening of brain waves – a precursor to brain death," he says.
"The memory loss is universal and sometimes irreversible", he claims, and there are also ongoing impairments in cognitive function, such as difficulties in concentration and difficulties in learning new material."
In a research published in 2012, that reviews the brain scans of ECT patients, Breggin testified to "a change in the brain functional architecture". Dr. Breggin explained that this is evidence of a reduction in the activity of the neural region that connects the frontal lobes to other parts of the brain "the part in charge of thinking, contemplating, creating, which deals with insights and love."
He claims that a decrease in the connections between the frontal lobes suggests that ECT is similar in effect, although at a reduced level, to surgical lobotomy, (a treatment that was given to people who suffered from mental problems and was finally outlawed, and the goal of the treatment was to destroy the anterior lobes tissue or disconnect them from each other).
Dr. Ruhama Merton, a veteran psychiatrist who worked for many years in the public service and later founded the organization Physicians For Human Rights – Israel and led it for 30 years, emphasized the significance of the effect of ECT. "ECT is not much different from lobotomy," she says. In both procedures, the goal is the same: to isolate the person from his or her personality. Modern medicine has found a sophisticated way to shackle a person who suffer from mental problems. Instead of chaining him and keeping him between walls, the ECT insulates him from his own individuality. He is disconnected from himself, for better and for worse, confined outside of the problem, but also outside of the solution."
Merton also emphasizes that psychiatry has no alternative to ECT: "It is not easy for psychiatrists to be in a position where they have to place a question mark regarding ECT, a treatment that psychiatry depends on. After all, if the medications don't help, they have no other solutions. There is a professional position of power here, which many would want to hold on to for dear life."
US neurologist Dr. John Friedberg has insisted that memory impairment is not a side effect of ECT, but its main effect. In 2001, when he testified at a meeting of the New York Mental Health Committee about some of the improvements the procedure had undergone, he argued that "There is no way to bypass the damage caused by ECT. The energy transmitted to the brain is equal to the energy needed to light a 100 Volt bulb for one second, or to throw an object weighing 30 KGs from a 30-centimeter on the head."
English psychologist Professor John Read, who has been in the UK and US mental health administration for nearly 20 years, claimed: "In the 1940s they justified the memory loss , claiming it easier for the patient, however afterward they have stopped referring to it in those terms".
He also claims that as far as evidence-based research is concerned, "There is not one controlled study that has shown that ECT is more effective than sham ECT or placebo (anesthesia only), beyond the first few weeks after treatment. Statistics show that one third of the patients experience a temporary relief, which will pass after several weeks".
In addition, Professor Read claims that "Close to one third of the patients will experience continuous memory loss as a result of the brain damage". He adds that while the psychiatric establishment has argued that treatment prevents suicide risk - "This claim relies on anecdotal evidence that is not conclusive".
Alongside this disturbing evidence, most of the psychiatric establishment seems to claim that this old treatment is effective, safe, and important . One of those who claim how critical this treatment is, based on his medical experience, is Dr. Moshe Isserles, director of the Treatment Resistant Depression (chronic, severe depression, whose patients are unresponsive to medications) and brain stimulation in the psychiatric department of Hadassah Medical Center, that treat patients with ECT since 2003. He said that over the years he had seen quite a few cases where the treatment had saved from suicide, relieved depression and prevented severe psychotic episodes.
There are a lot of people suffering from depression and schizophrenia that drug treatment just doesn't help them, and sometimes it is harmful," he said. "When I'm impressed that the source of the problem is biological and that the patient is drug-resistant, ECT is often the best option. The treatment is done with full anesthesia, accompanied by muscle relaxants, and lasts about ten minutes, so that the patient does not experience any suffering during the treatment. Unlike drugs, the effect here is fast."
"I have a lot of success stories. For example, a patient suffering from bipolar disorder, and his manic attacks were very extreme. He received all the possible drugs, including lithium, which is a very powerful drug given during manic attacks as a mood stabilizer, however, nothing helped him, and he also had to undergo kidney transplant because of the side effects of the drugs. He finally received one ECT set, namely a series of 12 treatments, and entered a remission of nearly two decades, and to my knowledge also stopped receiving medication. Years later, he had another mania attack, was again given ECT, and again entered an ongoing remission."
Dr. Isserles tells of another, very difficult case of a 50-year-old patient receiving medication for schizophrenia.
"Due to particularly severe side effects that included a significant injury to the production of white blood cells and severe obesity, he was hospitalized intensive care", he says. "When the drug stopped, he went into catatonic state (motor deadlock with no response to the environment). We already thought he wouldn't come out alive from the hospital. As a last resort, it was decided to perform ECT in intensive care, and to our delight, he left the hospital on his feet."
"For cost-benefit considerations, the benefit is much higher than the cost. This treatment removes people from depression, restores them to function and can release patients from high doses of medication. Between 60 and 70 percent of patients will be free from the depression state and will return to function. As mentioned, it varies from patient to patient."
How many patients receive maintenance treatment?
"Nearly half of them require maintenance treatments because there is no complete cure. Maintenance treatments can be done bi-weekly or once a month."
There are patients that claim that treatment has significantly damaged their memory.
"I have encountered memory damage, but not damage that I felt was significant or irreversible. According to professional literature, damage that lasts for a long time and significantly impairs functioning or quality of life is rare. In some cases, even if the treatment partially impairs cognition, it can at the same time significantly improve it, through the positive effect on the symptoms of depression. There may be remnants of a cognitive problem, but the patient will still be in a better cognitive state after ECT because the depression has been treated. If it was possible to do research, where people that have the first wave of moderate to severe biological depression and not receiving medication, and some will be given medicine and others receiving ECT, I would not be surprised if ECT will be more effective, even in the long run. Depression is a chronic disease that tends to recur. We get people whose brains have changed from drugs, and some of them may have become drug-resistant. The chance that one course of ECT will cure them forever is low. Therefore, there are two options: either continue the medication in different combinations or carry out ECT and continue with maintenance therapy."
The Health Ministry issued the following statement:
"The Ministry of Health does not have accurate data on the number of recipients of ECT. In general, ECT is one of the most effective and safe treatments that for historical and cultural reasons, carries a negative image and suffers from bad public relations without proper justification. As a result, the accessibility of the treatment for those who need it is often compromised as a last resort and a life-saving option. Indications for ECT are diverse and include mood disorders (depression and mania), catatonic and other psychotic conditions, that are resistant to medication. Treating with ECT can also be effective in conditions of Parkinson's disease and epilepsy resistant to treatment.
In regard of monitoring the side effects - the Ministry of Health procedure recommends pre-treatment cognitive evaluation. During and after treatment, repeated assessments can be performed according to clinical need".
"The informed consent form does not exhaust the informed consent process, which occurs between the therapist and the patient as a condition of treatment. As with any treatment, the cautious statements that manufacturers warns (especially in the US) is aimed for legal protection of the company and should be distinguished from the clinical position aimed at enabling a patient with a difficult illness to consider informed consent for treatment. The role of the physician is to explain to the patient the potential for harm versus the potential for benefit, with reference to the side effects".
In the past, the treatment involved significant memory impairment, but there have been technological improvements in recent decades that have reduced the potential for impairment. Today, the incidence of memory impairment is low and is usually temporary and reversible. Sometimes, depending on the severity of the mental state, the patient chooses to continue treatment despite the slight memory impairment that is expected to elapse - while exercising an informed and functional system of therapeutic benefit against the side effects. Finally, keep in mind that the drug alternatives also have quite a few side effects, which can be more severe than those of ECT.
Research has shown that electrical therapy does not cause any damage to brain tissue (including microscopic damage), even in people who have received hundreds of treatments throughout their lives. The claims that the treatment damages brain tissue are some of the negative public relations that have stuck to the treatment".
The Israel Psychiatric Association issued the following statement:
"First of all, because of the stigma against the treatment of ECT, some patients suffering from severe depression and loss are prevented from receiving this life-saving treatment. Sometimes the avoidance leads to tragic results. ECT is extremely important and is carried out according to the Ministry of Health's procedures and in accordance with the Western world. The decision about the cognitive function examination before the treatment is made at the discretion of the treating physician, according to the patient's condition and ability to cooperate in this complex examination. Furthermore, the preparation and approval process for the treatment is complex, and includes laboratory tests, neurological examination, examination by an internal physician, anesthesiologist, a pre-consultation with the patient himself/herself and his or her family, and the involvement of the hospital department manager, or his / her deputy, In deciding on the implementation and approval of the treatment, as well as according to a clear and orderly standardization. In addition to that, the treatment is carried out in Israel and the world solely through the demonstration of its efficacy by reliable clinical studies. As for the regulation – ECT is approved by the FDA and the labeling in Israel is the same as in the US".
