Sue Clark-Wittenberg has been in several articles in the media. The articles are listed below:
SUE TALKS ABOUT ECT IN THE CENTRETOWN NEWS ARTICLE
Sue was interviewed by Laura Keil in November 2008. Laura is a journalism student at Carleton Unviersity in Ottawa.
Here is the article in full text:
“SURVIVOR REFLECTS ON ‘INHUMANE’ TREATMENT OF THE PAST”
published in the Centretown News, December 6, 2008 in Ottawa, Ontario
Less than 40 years ago, Ottawa residents who needed support for mental health problems would not have found a number in the phone book.
That’s because until the 1970s, Ottawa did not have its own mental health treatment centre – patients in need of treatment had to travel an hour south to Brockville. The Royal Ottawa Hospital opened as a tuberculosis sanatorium in 1910, but it was another 60 years before its focus became caring for the mentally ill.
In 1976, the Sisters of Charity of Ottawa opened the Marguerite House on Cathcart Street. Devoted to mental health rehabilitation, it housed young women and girls who needed extra care on their way out of hospitals.
One of the girls who stayed there was Sue Clark.
Clark says when she got electroconvulsive therapy for the first time in 1974, the room was white, the doctor and nurses were white, and she was white with terror. They carried her down a hall as she kicked and screamed for someone to help her.
She says she received five shock treatments in all. They ended only after her heart stopped.
Clark, like many others, was treated in Brockville in the 1970s, before the mental health services we now take for granted became available. She says she underwent shock therapy against her will following a suicide attempt when she was 17.
“My father signed the paper. He was the controller of the family, and I was the black sheep,” says Clark, who sits in a motorized wheelchair that has two tall orange flags on each side that waver as she drives.
She has filled a binder with articles written about her struggle to end inhumane psychiatric treatments such as the one she received 35 years ago.
Now 52, she lives on a disability pension and suffers from long-term memory loss. She can’t read a newspaper article without forgetting much of what she just read.
Because of her experience, Clark founded the Psychiatric Survivors of Ottawa in 1991, which now has 200 members.
Renée Ouimet worked in a long-term psychiatric hospital during the 1970s.
“In the past if you talked about mental health you were different therefore you were shunned, you were ostracized,” Ouimet says.
Now the director of education for the Canadian Mental Health Association in Ottawa, Ouimet says that care has evolved to focus on wellness, recovery, and a holistic approach, not just medication or use of restraints.
But more extreme treatments, like shock therapy, still exist.
Many health professionals argue that the continued use of shock treatment can help patients in extreme situations recover, and they say the treatments themselves are better than they were 40 years ago. But Clark says her experience in 1974, which she describes as “torture,” proves shock treatment should be banned.
“I was tortured in my own country,” she says. “What they did to me was torture and I say that without reservation.”
In September, the United Nations recognized forced psychiatric treatment such as non-consensual electroshock as torture. Clark welcomes the acknowledgement of her suffering, but says she will continue to tell her story.
Despite criticism, electroshock therapy
commonly used in depression
Last Updated: Monday, May 12, 2008 | 12:22 PM ET
Despite protests calling for a ban on the treatment, electroshock therapy is frequently used by Canadian psychiatrists to treat severe depression.
The Canadian Institute for Health Information (CIHI) estimates that last year, the procedure, which dates back to 1938 and involves passing electrical currents though the brain to trigger seizures, was used more than 15,000 times in the country.
The figure has remained virtually unchanged since 2002, CIHI says, showing that the popularity of the procedure remains strong.
A report in the Canadian Medical Association Journal last week shows the procedure is commonly used to treat drug-resistant depression in seniors.
However, critics of the procedure believe its usage should be stopped, and it is a painful procedure that leads to brain damage.
On Sunday, about a dozen protesters rallied in Ottawa, calling for a ban of the procedure.
Protest organizer Sue Clark-Wittenberg had electroconvulsive therapy (ECT) 35 years ago, and says it has kept her from getting an education and a good job.
“The bottom line is electroshock always damages the brain. Electroshock always causes memory loss,” she says.
ECT survives calls for ban
Dr. Nizar Ladha, a psychiatrist based in St. John’s, has been using ECT for three decades. He says the procedure does induce seizures, but they’re not painful and don’t cause convulsions.
“As an effective and lifesaving treatment, it rates right up there with the discovery of penicillin,” he told CBC News.
Ladha says he has seen ECT help fight depression and prevent many suicides.
The Canadian Psychiatric Association argues that ECT is safe and effective, though the Canadian Medical Association says it can cause memory loss.
But Dr. Paul Breggin, a New York-based psychiatrist, is in a minority of psychiatrists who says the procedure should be banned.
“We’re treating human beings as if they are a very crude machine which can be battered back into shape.”
Still, Dr. David Goldbloom, a psychiatrist with the Centre for Addiction and Mental Health in Toronto, predicts it will become even more popular, having survived numerous calls to ban it and two provincial inquiries.
“Each time the conclusion is the same — that the balance of evidence supports retaining this to try to help people with depression.”
SHINING NEW LIGHT ON AN OLD PROCEDURE – DOCTORS, PATIENTS WEIGH PROS AND CONS OF ELECTROSHOCK THERAPY
By Jay HeIsler for the Halifax Commoner, Feb 22, 2008
It was 1986 and Dr. William McCormick was driving through a heavy snowstorm near his rural Nova Scotia home. He pulled into his neighbour’s driveway, the snow roar- ing in gusts and spirals around him, and rushed to the front door.
He was visiting as a friend and neighbour, not as a doctor, but his personal and professional worlds were about to collide. His neighbour’s wife answered the door, and told him to see her husband immediately. Something was wrong.
The man was sitting alone, visibly shaken. He said he had AIDS. He didn’t. He said he had infected his wife and children. He hadn’t. He held up his hands and said they were wast- ing away. They weren’t. He said there was a hunting knife in the basement, and that he had no choice but to stab his family to death.
The man had a clear case of psychotic depression. After being consoled by McCormick, he was scheduled to have electroconvulsive therapy, or ECT. McCormick received a letter from his former neighbour last Christmas.
It was the 21st anniversary of his psychotic incident. The man had moved back to the United States with his family and he had never suffered a relapse.
McCormick, born in Ireland, is now a professor, psychiatrist, and team clinical leader in Halifax and Lower Sackville, Nova Scotia. He has been administering ECT since 1959, when it was part of his training.
In 1952, his father was giving anesthesia to mental patients during ECT sessions at St. Patrick’s Hospital in Dublin. McCormick emphasizes the role of anesthesia and muscle relaxants in modern ECT sessions. His father’s work is what he sees as essential to the new, humane ECT which is now standard procedure.
“Even barbaric North America wasn’t using unmodified ECT when One Flew Over the Cuckoo’s Nest came out,” he says. The 1975 film contains a famous scene in which Jack Nicholson’s character violently convulses during an ECT session.
Patients are now asleep during electroshock. Their eyelids and thumbs may twitch, and their body may shudder slightly. The muscle damage and physical fractures of the past are no longer common side effects.
The debate continues, however, about what is happening inside the patient’s head.
Ottawa resident Sue Clark remembers some things about her stay in Ontario’s Brockville Psychiat- ric Hospital. She remembers a female friend being locked in an isolation room, naked, while male patients watched her through a window in her door.
She remembers a woman sitting on the floor, banging her head against her door all night, shouting “let me out.” She remembers the pills the nurses forced on her, and how she would hide them under her tongue and spit them out, before getting caught and given liquid medication instead.
What Clark doesn’t remember, what her friends told her about later, was getting dragged down the halls towards the ECT machine, kicking, biting and screaming for help.
She assumes that she had no history of violence, but was fighting at that moment so she wouldn’t be shocked against her will.
In Canada, consent is required for ECT, unless a patient is a minor. Clark was 17, and her father had given the nurses permission to give her ECT.
Clark had been raised by an abusive family. She had run away from home and briefly lived on the street. After telling a school psychiatrist about the abuse she suffered at home, she was told that she could visit the Royal Ottawa Hospital for three days to see if it helped. They held her there for three months, before sending her back to her family. After she tried to hang herself, she was sent to Brockville.
Clark was given five ECT sessions. Some time after the fifth, the nurses told her that her heart had stopped during the session and she had to be resuscitated. To this day she suffers serious memory loss. Now 52, she still misses trains and doctor’s appointments, and had to drop out of Carleton University after being unable to retain new information. She is now involved with the anti-psychiatry movement, which campaigns for the rights of mental patients, and seeks to expose the dangers of ECT and pharmaceutical drugs.
“As far as I’m concerned, there’s a cover-up,” says Don Weitz, a Canadian anti-psychiatry activist who has worked with Clark. He claims that the brain damage and memory loss that occur during ECT outweigh the alleged benefits, and says they have not been scientifically explained. He calls the use of ECT “totally corrupt, totally fraudulent,” and says that the extent of the damage is being hidden by the Canadian Psychiatric Association.
McCormick agrees that memory loss is a frequent side effect, but insists that it is temporary and usually disappears after eight months. He acknowledges that the effects of ECT are not fully understood.
“It works and we know that it works. We just don’t know how it works.”
Megan, 45, is a divorced mother of three from central Illinois. She requested that her full name and location not be published, to protect the privacy of her family.
She suffered a breakdown after her youngest son went to school. Her husband insisted that she go through ECT. Forced to watch her family fall apart as she spiraled into depression, she agreed.
She suffered serious, permanent memory loss as a result, but still feels that she owes ECT for her survival.
“My mom tells me that I’m lucky that I lost memories because some of the memories I lost were the bad ones,” says Megan.
“But I still remember my daughter coming in the bathroom while I was in the tub trying to slit my wrists. I remember my oldest son reading an online instant message archive between me and some man I was trying to bed. I remember my husband telling me how miserable I’d made the family.”
“I’ve lost a lot, a marriage, innocence, brain cells, my children’s childhoods, but I’m alive. Without ECT, I would not have been.”
ELECTROSHOCK THERAPY AT A GLANCE
ECT is given by Halifax’s Capital Health District Authority every Monday, Wednesday and Friday morning. There are usually between 10 and 15 patients each day. All are suffering from severe depression. ECT is also given at regional hospitals throughout Nova Scotia.
The electric shock instigates an epileptic seizure that can last for up to a minute, followed by a comatose state that can last up to 10 to 12 minutes.
While many patients have other mental illnesses, and are bipolar, schizophrenic or in some cases mentally challenged, they receive ECT to treat depression only. ECT is usually considered the last resort, after pharmaceutical drugs and other treatments have failed. Those most likely to undergo ECT are women and the elderly.
The number of ECT treatments patients receive depends entirely on how long their depression is per-ceived to last. Treatments may resume if the depression returns. Unlike schizophrenia, depression is not constant – it comes in sporadic episodes that can last months or even years.
Alternatives to ECT include pharmaceutical drugs, which have their own side effects and controversies, as well as community-based treatment and support (which is advocated by anti-psychiatry activists).
There were almost 3,000 ECT treatment sessions in Nova Scotia in 2006.electroconvulsive therapy at a glance
Many are in the dark about the use of electroconvulsive therapy in the province.
Shock therapy stole a part of Paivi Laine’s memory, but it didn’t take away her concern for others.
Laine is fighting to end the practice of electroconvulsive therapy, known as ECT, to treat depression.
She received the treatment in 1983 when she was a frazzled young mother in Oshawa with two children, two jobs and a rocky marriage.
“I was afraid of the therapy,” she says. “But doctors were like gods. You needed to trust your doctor. And I didn’t have any outside support. I didn’t know about the memory loss, until after.”
She has no memory of the time during her treatment and today has difficulty remembering things from one day to the next. She has also lost deep feelings, she says.
“I’m sad because a part of me is missing. I’m 52 years old and I am still searching for that part of me. My daughter has drive and passion. I used to have it, too, but it has been stolen away from me.”
Remarried now and living in the country east of Toronto where she can enjoy gardening, Laine will be telling her story Thursday at a Toronto news conference organized by the Coalition Against Psychiatric Assault (CAPA). She’ll also take part in a Mother’s Day March to stop the psychiatric treatment. The march, at 1:15 p.m. next Sunday, leaves the Clarke Institute of Psychiatry at College St. and Spadina Ave. and goes to Queen’s Park for speeches.
Shy and soft-spoken, Laine is willing to put herself in the spotlight to alert people that ECT continues to be used in Canada and that there can be serious side effects.
Once a creative individual, she now has difficulty even putting things down on paper.
“Since then, it’s been like being on the outside of a window, looking in.”
Memory loss is a common side effect of ECT, says Bonnie Burstow, co-founder of CAPA and a professor of adult education and community development at U of T’s Ontario Institute for Studies in Education. Her field of expertise is trauma.
She calls the memory loss suffered by some patients “brain damage” and equates it to the effects of hitting someone on the head “with a two-by-four.”
Another disturbing aspect of this treatment, primarily used for depression – which involves sending more than 100 volts of electricity through the brain via electrodes to induce a seizure or convulsion – is that the majority of patients are women, Burstow says.
Young women struggling with new babies and elderly women are the two groups of patients most commonly prescribed this therapy, says Burstow. That is why the coalition is organizing its rally for Mother’s Day under the slogan, “Stop shocking our mothers and grandmothers.”
Burstow’s study of ECT from a feminist perspective, “Electroshock as a Form of Violence Against Women,” has appeared in the U.S. publicationJournal of Violence Against Women.
“It’s a form of head injury,” she says. “Doing nothing is better than doing something that harms them.”
Burstow acknowledges that most people believe ECT has been discontinued, although roughly 2,000 people each year receive it in Ontario hospitals. At one time, the controversial treatment caused physical damage to patients who convulsed. It is now administered under a general anesthetic, which greatly reduces the bodily seizure.
Dr. David Goldbloom, senior medical advisor at Toronto’s Centre for Addiction and Mental Health, says the treatment at his institution is used for those with moderate to severe depression where drugs or other therapies haven’t worked or are not advised.
For example, elderly people may be on medications that make additional drug therapy inappropriate, he says.
Women in society have about double the rate of depression of men, which Goldbloom says explains the higher proportion of women receiving ECT.
Every treatment has some side effect, he adds, acknowledging that memory loss and headaches can result. However, he says, when other treatments fail, ECT, which has a success rate of 70 to 80 per cent, is used.
“ECT is not typically a first line of response.”
Wendy Funk, 50, was another young mother of two who suffered memory loss after receiving a series of ECT treatments in 1989. Now living in the Yukon, Funk says she was literally “tricked” into going to hospital in Medicine Hat, Alta., where she was given drugs to treat depression, followed by ECT.
She lost her memory and didn’t even know her own name. She’s since been dogged by an inability to remember many things day to day. The treatment meant an end to the law school studies she’d begun before treatment.
Her two children, now 27 and 25, witnessed their mother’s difficult journey.
“It was quite traumatic for them. I didn’t know who they were.”
But Funk also found joy – she had another child, now 14, and has developed a love of music.
She believes the reason people think shock therapy has died out is because no one wants to talk about it because of the stigma attached. “It’s shameful. Nobody wants to admit they had it.”
But more women are coming forward with their stories as the coalition lobbies for change.
Sue Clark-Wittenberg, of Ottawa, was 17 in 1973 when her father signed permission for her to receive shock therapy. She has been told she screamed, “God, someone help me!” as they led her away for treatment.
She’s received various diagnoses for her depression and suicidal thoughts, but says she has not been on any medication or in therapy for many years.
One of her big regrets is not getting a degree. “I couldn’t go to university because I couldn’t remember. Before I was shocked, I was top of my class. I was good in school.”
Chatty and funny, Clark-Wittenberg keeps notes on everything because her memory is so poor. For instance, she must write down all appointments and then leave herself a prompt to order her transportation a day in advance.
“It’s chaotic,” says Clark-Wittenberg who is in a wheelchair because of arthritis, “I can’t remember from day to day.”
CANADIAN MEDICAL ASSOCIATION JOURNAL (CMAJ)
CMAJ May 6, 2008; 178(10) Link: http://www.cmaj.ca/content/vol178/issue10/
Inducing seizures among seniors
by Hannah Hoag – Montréal, Que.
For some patients with major depression, psychotherapy and medicationsoffer little respite, which prompts many psychiatrists to turn to electroconvulsive therapy, particularly to relieve psychosis or thoughts of suicide.
It’s been anecdotally suggested by several Canadian physicians that inducing seizures in the brains of Canadian seniors is rapidly becoming the norm in the treatment of the elderly fordepression. Quantifying that trend, though, is somewhat problematic because of provincial differences in the reporting of data to the Canada Institute for Health Information (CIHI). There is some evidence to suggest, however, that electroconvulsive therapyis, in fact, now more often administered on an outpatient basis and more often to seniors.The popularity of electroconvulsive therapy has ebbed and flowed over the course of its 70-year history, but the treatment is now well accepted in Canada, says Barry Martin, head of theelectroconvulsive therapy service at the Center for Addiction and Mental Health in Toronto, Ontario.
Data on its current use are incomplete, although CIHI conservativelyestimates that annual administration of electroconvulsive therapy has been relatively unchanged, at about 15 000 procedures per year, since 2002. But CIHI lacks information about outpatient procedures performed in Quebec and Alberta, and data for hospitals outside the Winnipeg area prior to the 2004/05 fiscal year.
The treatment’s usage also appears to have oscillated during the last 25 years. In Quebec, the number of patients who received electroconvulsive therapy increased from 455 to 871 between 1983 and 2003; 681 patients were treated last year. During the late 1980s and early 1990s, its use on an inpatient or day surgery basis in Manitoba hospitals declined, but peaked at 482 patients in 1999. In Ontario, treatments have also been on the rise,from 7800 to 10 800 between 1999 and 2005.
According to Canada-wide statistics, electroconvulsive therapy is increasingly being delivered on an outpatient basis, eliminating the need for overnight stays in unfamiliar institutions andreducing the risk of exposure to hospital infections.
“If the patient is well enough not to require inpatient hospitalization, it is better to have it done [as an outpatient] and go home,” says Martin. Inpatient electroconvulsive therapy accounted for half the treatments provided in Canada in 2002, but only 36% in 2005 (Figure 1). The nationwide stats also confirm that electroconvulsive therapy is being given to seniors more often. Patients over the age of 70 received 30% of all electroconvulsive therapy procedures in 2005, as compared with 23% in 2002 (Figure 2). Caroline Gosselin, a geriatric psychiatrist and clinical professor in University of British Columbia Department of Psychiatry saysthat’s because depression is common among the elderly and is more likely to lead to suicide; men over the age of 80 have the highest suicide rate among Canadians.
“Sometimes an older person won’t respond to an antidepressant. The depression becomes worse and then it becomes life threatening. ECT [electroconvulsive therapy] works quickly,” Gosselin says.
Some advocates are concerned that it is being overused in the elderly. “Certainly there is a lot of depression [in the elderly], but my opinion is that ECT [electroconvulsive therapy] is aneasier method than trying medications and it adds a measure of control,” Juli Lawrence says. Lawrence, who had electroconvulsive therapy, established ECT.org, a website that provides information about the treatment.
Patients offer mixed responses about electroconvulsive therapy. Some claim to have been well informed about the treatment and the risks involved, and that it succeeded in relieving theirdepression. Others say they were forced into it, were not fully informed of the potential memory loss or allowed to stop treatment at their will.
Murray Enns, a professor and head of psychiatry at the University of Manitoba, says practices are now differerent. “Even textbooks written in the 1950s reflected the attitude that the doctor ought not to worry the patient about side effects.” The most common complaint associated with electroconvulsive therapy is memory impairment. Patients often wake up confused immediately after the treatment. They may have trouble remembering some past events and some have difficulty forming new memories for a short time. When unilateral electroconvulsive therapy is used, the memory effects are generally less severe.
“It is a risk–benefit analysis. Generally people accept it because it is much less debilitating than the ongoing depression,” says Martin. “We make it very clear when obtaining consent thatthere is a risk of patchy loss of memory. There is a full recovery of anterograde memory — the ability to form new memories. If there wasn’t, this procedure would never have lasted.”
Sue Clark says she received 5 electroconvulsive therapy treatments in 1973 when she was 17 years old, but didn’t benefit from them. “I suffer from permanent memory loss and have trouble learning new things,” she says. She’s concerned that patients aren’t being fully informed of the potential side effects of electroconvulsive therapy, including the risk of memory loss.
Some allege that electroconvulsive therapy causes brain damage. The proof, they say, is in the long term effects it has on memory. But there is no evidence to support that, says Nick Delva, head of the department of psychiatry at Dalhousie University. “When there is brain damage, as there is with a stroke, there are chemicals that can be found in the blood. They’ve been measured [following electroconvulsive therapy] and they’re not there.”
But a 2007 study confirmed that electroconvulsive therapy can have some long-term memory effects. Harold Sackeim, chief of the Department of Biological Psychiatry at the New York State Psychiatric Institute and professor at the College of Physicians and Surgeons at Columbia University, found that some older forms of electroconvulsive therapy were still in use in the New York metropolitan area. “The use of sine wave stimulation and the [bilateral] electrode placement were both associated with greater short-and long-term deficits,” he and his colleagues write inNeuropsychopharmacology. “There appears to be little justification for the continued first-line use of BL ECT [bilateral electroconvulsive therapy] in the treatment of major depression.”
Delva is conducting a national electroconvulsive therapy survey called CANECTS, which aims to ultimately reveal how many facilities now offer electroconvulsive therapy, which conditions are being treated, what type of equipment is being used, what consent processes are being followed and what information is being revealed to patients. Teaching, budgets and patient access will also be assessed.
“There was no information of this sort for Canada,” he says. Preliminary results indicate electroconvulsive therapy is now offered at 177 sites.
International data comparing the use of electroconvulsive therapy as a treatment for depression among seniors are unavailable. But what limited international data exist on overall electroconvulsive therapy use suggest that rates are lower in Canada than elsewhere (J Affect Disord2006;90:67-71). The overall rate in Denmark was 30.5 per 10 000 in 1999, 11.4 in India in 2002, 10.9 in Great Britain in 1999, 6.8 in Belgium in 2003 and 1.8 in the Netherlands in 1999. Using CIHR and Statistics Canada data, the rate for Canada was 4.6 in 2005.
Notes on electroconvulsive therapy
Although electroconvulsive therapy is accepted by the Canadian and American psychiatric associations as a treatment for major depression and bipolar disorder, it has a checkered history.It once was administered without muscle relaxants or anaesthetics. Full body convulsions caused serious complications, including changes in heart rhythm and vertebral compression fractures. Early generations of electroconvulsive therapy machines delivered electricity at much higher doses, and in a waveform later found to be less efficient at inducing brain seizures and more likely to cause memory impairment. In the 1950s to 1970s, during which consent procedures were less sophisticated, there was misuse; for example, to “treat homosexuality” (BMJ 2004;328:955-6). Many activists continue to demand that it be banned.
Electroconvulsive therapy delivery has been significantly refined, while the risk of fracture has been virtually eliminated. Patients receive anaesthesia, a muscle relaxant, ventilation and oxygen. Two electrodes are placed on the scalp, either on both temples (bilateral electroconvulsive therapy) or on one side of the head (unilateral electroconvulsive therapy). A pulse of electricityis typically used for a few seconds.
Some people respond rapidly, requiring only 5 or 6 treatments, Enns says. Patients usually take an antidepressant and a mood stabilizer to delay a relapse; a 2006 study found that electroconvulsive therapy — 1 dose every 4 to 6 weeks — can have similar effects (Arch Gen Psychiatry2006:63:1337-44).
Some studies in animal models suggest that electroconvulsive therapy may in fact produce new brain cells. It increases the expression of brain-derived neurotrophic factor, a peptide thathas been shown to support neuron growth in brain regions key to the regulation of mood and behaviour (The Pharmacogenomics Journal 2008;8:101-12). Decreased serum brain-derived neurotrophic factor levels have been reported in depressed patients (Psychiatry Research 2002;109:143-8). Other studies have found that plasma BDNF levels of patients receiving electroconvulsive therapy for major depression increased following treatment (J Clin Psychiatry 2007;68:512-7).