CVMC seeks OK for shock therapy

CVMC seeks OK for shock therapy

November 5, 2007

BERLIN – Central Vermont Medical Center is seeking state approval to provide electroconvulsive therapy to a small number of psychiatric patients so they can receive treatment closer to home.

“On the average, CVMC has been treating six to 12 patients a year who are subsequently sent to Dartmouth or Fletcher Allen for electroconvulsive therapy, so the ability to have this in the community is important,” said Dr. Peter Thomashow, CVMC’s medical director of inpatient psychiatry.

Once referred to as electroshock, the treatment now called ECT has changed substantially and been refined since it was first introduced in the early 1940s.

“Generally, this is a treatment reserved for patients with severe depression, depression with psychotic features and sometimes for very agitated depressions. It is rarely used first-line,” Thomashow said, explaining that in most cases psychiatrists turn to it only after drug therapy has proven unsuccessful or in situations where the depression is life-threatening.

No patients from Vermont State Hospital or the Vermont Department of Corrections will be treated if approval is granted for CVMC, Thomashow said.

Thomashow cited “lethal catatonia” as an example of a life-threatening condition where electroconvulsive therapy might be used as a first-line treatment. “Someone in severe catatonia can be so impaired that they don’t eat or drink, they don’t move,” he said. “ECT is the most effective treatment for this kind of catatonia.”

All patients who come to the unit for care will get a comprehensive screening, including “a full battery of blood tests to rule out any possible medical causes for their depression. Sometimes, patients will get a CT scan or an MRI of the brain to rule out any medical condition such as a brain tumor that could cause their depression,” he said.

For many, the public image of ECT comes from the movie of Ken Kesey’s “One Flew Over the Cuckoo’s Nest,” in which actor Jack Nicholson undergoes the process. But both the equipment and the sophistication of its use have changed considerably.

Thomashow and the other two psychiatrists at CVMC, Dr. Kenneth Adler and Dr. Paul Cameron, had a weeklong fellowship at Columbia University School of Medicine, where much of the research in ultra-brief unilateral electroconvulsive therapy – the kind that CVMC plans to use – has been done. The nursing staff has also gone through training.

“The ultra-brief unilateral ETC is a fairly recent development,” Thomashow said, explaining that the machine CVMC purchased is able to deliver stimulus to just one side of the brain, which “has far less side effects and is much better tolerated than bilateral (both sides of the brain) ETC.”

Jim Tautfest, the nurse director of inpatient psychiatry, noted that the new machines can be adjusted to a variety of pulse-widths, frequencies and durations of stimulus. This flexibility enables the psychiatrist to provide effective treatment with fewer side effects.

The most common side effect is short-term, and in some cases also long-term, memory loss. The degree of memory loss is the subject of substantial debate.

The decision to use electroconvulsive therapy will be made by a treatment team, Thomashow said, and will include extensive records reviews, consultation with the primary care physician and interviews with the patient and his family, along with a full medical work-up.

With a patient who presents special concerns, Thomashow said, tests will be done to determine if electroconvulsive therapy will work or pose problems. Elderly patients will get cardiograms, and patients over 50 will get chest X-rays. A patient who has had a recent heart attack would not receive electroconvulsive therapy, Thomashow noted.

He added that “there’s a very detailed informed consent process that is supervised by the state of Vermont. There’s quite a lot of oversight and regulation.” Patients and families will be shown an informational videotape produced by Dartmouth Hitchcock Medical Center and will discuss the risks and benefits of electroconvulsive therapy before consenting to the treatment.

“There’s no question that it’s a very effective treatment in the right individual,” Thomashow said, offering benefits to some “individuals who have suffered for prolonged periods of time, whose lives have changed and who have not been able to function.”

CVMC’s application is the first the Department of Mental Health will act on since the Legislature charged it in 2000 with oversight. Fletcher Allen Health Care, White River Junction VA Medical Center and Retreat Healthcare in Brattleboro are already providing ECT.

Dr. Bill McMains, the medical director of the Department of Mental Health, said officials will conduct a review to make sure that the hospital’s standards for ECT comply with national standards, as well as meet extra state requirements to ensure “the safety of the person and making sure that people are adequately educated about what they’re doing.”

Vermont has “a very in-depth consent form” that hospitals must agree to use in order to get certified, he added. The form was developed through two years of negotiations with treatment experts and hospitals that were delivering electroconvulsive therapy at the time. McMains noted that Rep. Anne Donahue, R-Northfield, who follows mental health issues closes, was “very much a party” to developing the document.

The form, which all Vermont hospitals must use, requires that hospitals obtain the patient’s consent after every 12 treatments. “So a person doesn’t give ‘forever’ consent,” McMains observed. “It’s only good for 12 treatments, and then you have to go over it and get consent for any more.”

Ministers in U-turn on shock therapy

By Marie Woolf and Sophie Goodchild
Published: 17 June 2007
The Independent

A government U-turn tomorrow will herald huge improvements in mental- health treatment for young people. In a series of compromise changes to its controversial Mental Health Bill, the Government will curb the use of electroconvulsive therapy (ECT) on teenagers and ensure they do not have to share wards with adults, who are often disturbed and dangerous.

As the Bill reaches a crunch phase in the Commons, amendments will mean no child under 18 will be givenECT without a second opinion from a doctor. Children must also be treated in an environment appropriate for their age.

The U-turns follow criticism from a powerful coalition of mental health charities, psychiatrists, MPs and peers, who tore apart the Bill with a series of amendments. The Independent on Sunday has highlighted opposition to the Bill for five years.

Ministers are said to be ready for a “dog fight” over parts of the Bill they refused to compromise on, such as the definition of mental illness. The Mental Health Alliance welcomed the changes but said the Bill was still “not fit for the 21st century”.

Gay victims of Franco era to win compensation

By Graham Keeley in Barcelona
28 December 2006
The Independent

In the dying days of General Francisco Franco’s dictatorship, Antoni Ruiz found out for himself what thousands of others had already suffered for being gay.

Antoni, then just 17, from Valencia, eastern Spain, told his mother he was homosexual and his family sought advice from a nun. “She went straight to the police and I was arrested and sent for trial,” said Mr Ruiz.

“I spent three months in prison. I was raped there and in the police cells and psychologically tortured by both the guards and the prison doctor.”

Now, 31 years later, Mr Ruiz and a dwindling band of others who suffered General Franco’s ruthless repression of homosexuals, may finally be offered compensation by the state.

The Spanish government may offer money to those who were sent to mental hospitals, tortured, imprisoned or who suffered a lifetime of persecution. The Spanish Justice Minister, Juan Fernando López Aguilar, is considering granting victims a pension of €800 (£540) a month, plus a one-off €12,000 payment for what they suffered under the regime. It could be introduced in two months.

Many homosexuals were prevented from working under the Franco dictatorship because of their “criminal” records, meaning they never contributed enough money to receive more than the minimum pension.

Mr Ruiz, president of the Association of Ex-Social Prisoners, said the move would be a victory. “This is not just about economic compensation but remembering homosexuals who suffered under unjust and dictatorial laws,” he added. A few hundred survivors will see the payments – many of the thousands victimised have since died.

During Franco’s homophobic dictatorship, gays were jailed or locked up in sinister mental institutions known as “correction camps”. With echoes of the Nazi atrocities against gays, they were given electric shocks in the belief that this would rid them of their homosexual urges. Inmates were forced to watch pornographic films featuring women in an effort to show them a sex life that was deemed “natural” by the conservative authorities.

As part of their nationalist, Catholic ideals, the Franco regime and its Falangist supporters considered homosexuals a threat to the “macho” Spanish male.

General Queipo del Llano, who broadcast to the nation, once said: “Any effeminate or introvert who insults the movement will be killed like a dog.”

The most famous gay man killed by the regime was the poet and playwright Federico Garcia Lorca, who wrote Blood Wedding and The House of Bernarda Alba. Considered a subversive, he was executed by a Nationalist firing squad in Granada in 1936.

Homosexuality was designated as an offence under the “law against delinquency and criminals” introduced in 1954. But towards the end of Franco’s regime, it was increasingly viewed as an illness rather than a crime. In 1968, the psychologist Lopez Ibor said: “Homosexuals should be seen more as sick people than as criminals. But the law should still prevent them proselytising in schools, sports clubs and army barracks.” Jail terms of up to three years were imposed under laws covering “public scandal” or “social danger”.

Homosexuals, almost all of them men, were packed off to mental hospitals, where some were given electric-shock therapy.

Lower middle class or working-class gays without powerful friends in the regime to protect them were the main victims. For others, the situation was different. The historian Pablo Fuentes said: “It is not uncommon to hear homosexuals from the upper classes and the aristocracy speak about the Franco period as a great time.”

Many gay people who suffered at the hands of the regime are reluctant to raise the issue because of the horrors it brings back or because they still fear society’s attitudes.

Even after Franco died, persecution of gays continued. They could be jailed until 1979. And although thousands of political and other prisoners were pardoned in 1976, gay people were made to serve their sentences. In 2001, Spain finally pledged to wipe clean the criminal records of gays convicted under Franco.

The present Socialist government legalised same-sex weddings and gay adoption in 2005, against opposition from the conservative opposition and the Roman Catholic Church.

Pedro Zerolo, president of Spain’s Federation of Gays and Lesbians, said: “What we want is a declaration of moral rehabilitation for those people who had part of their lives stolen by the state.”

ECT is banned in Swiss Canton

An interesting report from John Dawson reviews laws in New Zealand, Switzerland, the UK and Canada.

from: COMMUNITY TREATMENT ORDERS: INTERNATIONAL COMPARISONS
John Dawson
May 2005
Funded by the New Zealand Law Foundation

Referring to the canton of Geneva:

“There is an active consumer advocacy organisation, known as the Patients’ Council, and the use of ECT is banned by law in the canton.”

Page 82:
Full report

Juli Lawrence testimony to Missouri Senate

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you.

Texas ECT Administrative Code

Texas Administrative Code
TITLE 25
HEALTH SERVICES
PART 2
TEXAS DEPARTMENT OF MENTAL HEALTH AND MENTAL RETARDATION
CHAPTER 405
CLIENT (PATIENT) CARE
SUBCHAPTER E
ELECTROCONVULSIVE THERAPY (ECT)
RULE §405.112
Report of ECT

(a) Reporting requirements for state facilities and community centers.

(1) A report of each individual ECT administered to a patient shall be entered into the patient’s medical record and shall include, but not be limited to, the following:

(A) diagnosis for which ECT given;

(B) date of treatment;

(C) type of ECT machine used;

(D) duration and strength of electrical stimulation;

(E) all medications administered; and

(F) any complications or adverse effects.

(2) A report of all ECT treatments will be provided at the end of each month to the chief executive officer. The report shall include the following:

(A) name, age, gender, and identification number of patient;

(B) diagnosis for which ECT given;

(C) dates and number of treatments given; and

(D) any complications or adverse effects.

(b) Reporting requirements for all providers.

(1) On a quarterly basis, the chief executive officer of a mental hospital or other facility that administers ECT, psychosurgery, “prefrontal sonic treatment,” or any other convulsive or coma-producing therapy to treat mental illness and any physician who administers ECT on an outpatient basis shall make a written report to the TXMHMR medical director containing the information requested on the form entitled “Report of ECT/Other Therapies” which is referenced as Exhibit C of §405.117 of this title (relating to Exhibits). The reporting format requires clinical data from before, after, and 30 days after treatment.

(A) The facility and/or its medical staff shall require that the treating physician(s) provide complete, accurate, and timely information to the CEO for this purpose.

(B) Reports must submitted to be received by the TXMHMR medical director not later than 30 days following the end of each state fiscal year quarter. For treatments administered in September, October, and November, the deadline is December 31; for December, January, and February, the deadline is March 31; for March, April, and May, the deadline is June 30; and for June, July, and August, the deadline is September 30.

(2) The report will include, but may not be limited to, the following information for the quarter:

(A) the number of persons who received the therapy, including:

(i) the number of persons receiving voluntary mental health services who consented to the therapy;

(ii) the number of involuntary patients who consented to the therapy; and

(iii) the number of involuntary patients for whom a guardian of the person consented to the therapy;

(B) the age, gender, and race of the persons receiving therapy;

(C) the general source of the treatment payment;

(D) the number of non-electroconvulsive treatments listed in paragraph (1) of this subsection;

(E) the number of electroconvulsive treatments administered for each complete series of treatments, excluding maintenance treatments;

(F) the number of maintenance electroconvulsive treatments administered; morma

(G) the number of fractures, reported memory losses, incidents of apnea, and cardiac arrests without death;

(H) autopsy findings if death followed within 14 days after the date of the administration of the therapy; and

(I) other information that may be required by the department.

(c) Reporting requirements for the department.

(1) Annually the department shall compile the information reported under subsection (b) of this section by mental hospital, other facility, and private physician administering ECT on an outpatient basis. Private physicians and individual patients shall not be named or otherwise identified.

(2) A copy of the report shall be filed with the governor and presiding officer of each house of the legislature.

(3) The department shall use this information to analyze, audit, and monitor the use of ECT and other reportable procedures.

Source Note: The provisions of this §405.112 adopted to be effective January 1, 1992, 16 TexReg 7528; amended to be effective December 10, 1993, 18 TexReg 8790; amended to be effective February 11, 1998, 23 TexReg 1089

Assemblyman Marty Luster Press Release regarding NY ECT bill

LUSTER OFFERS ELECTROCONVULSIVE THERAPY BILLS

Assemblyman Marty Luster (D-Ithaca), chairman of the Assembly’s Mental Health Committee, today announced introduction of a comprehensive package of legislation to respond to the increased use of electroconvulsive therapy (ECT) in New York State. Luster also announced that the committee will hold a second public hearing on the subject,

ECT, a medical procedure that entails sending an electric charge through an individual’s brain in order to trigger a grand mal seizure, is a method used to help people with certain mental illnesses. While advocates claim positive results using ECT, opponents charge that ECT causes brain damage and, in most cases, permanent memory loss.

Luster said that the Assembly first became aware of current issues surrounding ECT use at a public hearing held in February 2001, to address the Governor’s proposed closing of certain psychiatric centers. A witness at that hearing called upon the Legislature to look into the case of Paul Henri Thomas, a patient at the Pilgrim Psychiatric Center, who was being given ECT against his will.

“As a result of our investigation, we became aware of other patients who claim to have been subjected to ECT against their will and the wishes of their families, as well as a plethora of problems and issues concerning the use of ECT,” said Luster. Also of concern to Luster is the fact that Mental Hygiene Legal Services has reviewed applications for court-ordered, involuntary ECT and has found that such applications have increased over 70 percent from 1999 to 2000.

The committee held a public hearing on ECT in New York City on May 18.

“It was clear from a review of the literature, pre-hearing interviews with advocates and opponents of ECT, and from the testimony provided at the public hearing that the Legislature needs to better understand ECT use and to act to ensure that ECT is being utilized safely,” Luster said.

As a result of its inquiries, Luster said the committee has:

– requested that the NYS Commission on Quality of Care for the mentally-disabled look into the matter of Paul Henri Thomas. After an initial report, Chairman Luster has requested that the Commission revisit that case with a focus on alleged violations of regulations and procedures.

– drafted legislation that:

1. Requires the Office of Mental Health (OMH) to identify the incidence of ECT in New York State in both public and private hospitals;

2. Requires patient follow-up and reporting to OMH regarding patient deaths or illnesses following ECT;

3. Prohibits the use of ECT in doctors’ offices or other locations that do not have emergency medical facilities;

4. Clarifies issues related to the “informed consent” process;

5. Creates a temporary Advisory Council to assist the commissioner of the Office of Mental Health in developing procedures and practices that shall be followed by all facilities using ECT in New York State, including: licensing requirements for clinicians wishing to administer ECT; patient monitoring, before, during and after ECT; bans on the clinical use of certain ECT equipment; and procedures to be followed when surrogate consent for ECT is sought and refused.

– scheduled a second public hearing for July 18th in Albany to further investigate ECT, and, in particular, the issues of informed consent and procedural safeguards that may be necessary when involuntary, court ordered ECT is being considered.

Luster expressed his appreciation for the assistance the committee has received from experts on the use of ECT. In particular, he commended Anne Krauss, a former employee of OMH, who was forced to resign her position for advocating on behalf of Paul Henri Thomas and Anna Szyszko, sister of Adam S., another patient at Pilgrim Psychiatric Hospital. Luster noted that in her testimony, Szyszko stated, “While the hospital is fighting for the rights to control and limit Adam’s treatment options, my brothers mental health is deteriorating; no one, therefore, can convince me that they have their best intentions in mind for Adam.

Luster said the committee’s work is providing the first careful look given ECT by the state Legislature since the mid-1970s.
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Note: Attached are background documents on the use of ECT.

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Testimony of Anne Krauss to NY Assembly

Hello. My name is Anne Krauss. I’m presently employed as the Administrator for the National Association for Rights Protection and Advocacy, although I am here today as a private citizen, not as a representative for that organization. Up until March 21 this year, I worked for the New York State Office of Mental Health as Recipient Affairs Specialist for Long Island. On March 9, I received a call from John Tauriello, Deputy Commissioner and Counsel of the New York State Office of Mental Health (NYS OMH) and Robert Meyers, NYS OMH Deputy Director of the Division of Community Care Systems Management. They informed me that if I continued to actively advocate on behalf of Paul Thomas in his efforts to prevent Pilgrim Psychiatric Center from shocking him, OMH would view this as a conflict of interest with my employment. I explained that I was engaged in this activity on my own time and at my own expense. However, they insisted that, since Mr. Thomas is engaged in a legal battle with the organization for which I worked, that it would be unethical for me to advocate for Mr. Thomas while working for OMH. On March 21, I submitted my letter of resignation, which was accepted on March 22.

Up until December, 2000, electroshock had not been an issue to which I had devoted much attention. I would have been surprised to learn that less than four months later, electroshock would be the issue which would lead me to resign. When I learned in December that Pilgrim Psychiatric Center was seeking to treat a patient with electroshock against his family’s wishes, I began to seriously educate myself about this complicated issue. When I learned that Paul Thomas, whom I first met in 1998, had received over 50 shock treatments in less than two years despite his objections, I felt compelled to act.

I am a person who firmly believes that it is important to gain a scientific understanding of a problem before reaching any decisions about a course of action. I come from a family of scientists. Both my father and my brother were educated at the California Institute of Technology. I was a physics major at Harvard University when I married and dropped out to raise a family. My husband received a Ph.D. at Cal Tech in biochemistry after receiving a medical degree at Cornell College of Medicine. I eventually finished my undergraduate education at Empire State College, then entered a Ph.D. program in experimental psychology and cognitive neuroscience at Syracuse University. Once again, family obligations cut short my educational pursuits, but my devotion to scientific approaches remains unwavering.

Proponents of ECT claim that research overwhelmingly supports the hypothesis that electroshock is safe and effective. A cursory glance at the research literature would appear to support this claim. However, I would caution the members of this Assembly Committee to look very closely and critically at the scientific evidence which is currently available. In ten minutes, there is not time to adequately examine what research has been done, or, more importantly, what research has not been done. Even if this whole day were devoted to understanding the research picture, we could only scratch the surface. However, let me share some information which I hope will pique your curiosity, as it did mine, so that you will withhold judgment until you have time to thoroughly investigate the evidence.

Electroshock devices are classified by the Food and Drug Administration as Class III medical devices. Class III is the most stringent regulatory category for medical devices. Electroshock devices were placed in this category because of their potential to cause unreasonable risk of illness or injury. These devices can be marketed under current regulations only because they have been “grandfathered” in by virtue of being marketed prior to 1976, when the medical device classification and regulation system was put into place. The manufacturers of these devices have never submitted the evidence which the premarket approval process requires of all devices introduced after 1976. Premarket approval is a process of scientific and regulatory review to ensure the safety and effectiveness of class III devices. Keep this in mind if you hear that older reports of neuropathology resulting from electroconvulsive therapy in experimental animals and humans are “outdated”. Similar studies have not been conducted using contemporary shock techniques and devices. Such studies have not been required for marketing, since these new devices are accepted by the FDA to be “as safe and as effective or substantially equivalent” to the older devices. Until such studies are conducted, there is a lack of scientific evidence that these newer devices actually are safer, as claimed.

You may have noticed that I prefer the term “electroshock” rather than “ECT” or “electroconvulsive therapy”. The term ECT implies that the effectiveness of the treatment depends upon the production of a convulsion, or seizure. If this were indeed the case, the safest device would use the minimum dosage of electricity necessary to induce a convulsion. Such a device was developed, and, indeed, the memory changes, confusion, and agitation observed in people shocked with this device were not as large as observed in association with higher dose machines. However, use of low dose machines was abandoned, because psychiatrists found them considerably less effective. This suggests that the size of the electric shock, rather than simply the length of the convulsion, plays an important role in this treatment. It also suggests that negative side effects are inseparable from what psychiatrists perceive as the therapeutic effect. It is also interesting to note that even proponents of electroshock do not claim a therapeutic effect lasting longer than a few weeks, which coincidentally is the same length of time required for the most obvious of the memory disruptions to clear.

In considering the evidence, I also caution you to distinguish between solid research evidence and mainstream medical opinion. Remember that Moniz was awarded a Nobel prize for the lobotomy, which was considered a major medical breakthrough in its day. Remember also that tardive diskenesia was recognized by critical researchers and, yes, anecdotally by patients, for well over a decade before the medical establishment was willing to admit the true dimensions of this serious problem associated with pharmaceutical treatment of psychosis. Remember this before you hastily marginalize researchers and patients who are critical of electroshock.

During these past five months I have learned that, despite rhetoric which pays lip service to a concept of recovery from psychiatric disability based on self-help and empowerment, in practice OMH acts as though the only legitimate treatments are pharmaceuticals or electroshock. Twelve years ago I was hospitalized with what was diagnosed as a schizophreniform psychosis, and I had experienced considerable psychiatric disability even prior to my hospitalization. Symptoms of neuroleptic malignant syndrome, a life-threatening side-effect of medication, abruptly ended the pharmaceutical treatment I had been receiving. Since that time, a combination of psychotherapy and self-help through peer support have helped me to recover to a point that I no longer consider myself to have a psychiatric disability.

I realize that my story can be criticized as anecdotal, however, a careful review of the literature will reveal considerable evidence that, even for people experiencing extreme psychiatric states, effective alternatives exist other than drugs and shock. Dr. Bertram Karon conducted a study in which psychotherapeutic treatment of people diagnosed with schizophrenia was compared to pharmaceutical treatment. This study, which was funded by NIMH, provided evidence that the outcomes for the group treated with psychotherapy were superior to those of the drug treated group.

In his book, Recovery from Schizophrenia, Richard Warner compares conditions in non-industrialized countries to those in the West, in an effort to explain why, although the appearance of altered state is relatively constant across cultures, recovery rates seem to be much higher in the non-industrialized world. The factors he identifies which appear to promote recovery in non-western cultures are remarkably similar to those present in the self-help community which I found helpful in my recovery.

Both of the people I know for whom OMH is seeking court ordered shock have not been given adequate access to psychotherapy. Limitations on visitation have also seriously curtailed their access to peer support. One person is still not permitted to receive visitors other than immediate family members. The ward environment in which he must live would be stressful for anyone, and certainly has not been designed to effectively promote recovery in a person who is experiencing an altered state. Yet OMH claims that electroshock is the only available option for both of these individuals, because of dangerous effects each has experienced from drug treatment.

Recommendations:

At a minimum, a moratorium on forced electroshock treatment should be sought in New York State until FDA premarket approval requirements are met. No person should be involuntarily subjected to treatment with a Class III device for which the FDA has not yet received reasonable assurance of both safety and effectiveness. Acceptance by the medical community is not a substitute for rigorous testing.

Reporting requirements for basic information on each procedure administered in New York should be instituted, including patient age, location of treatment, status as voluntary or involuntary patient, and any death of a patient occurring within two weeks of the procedure. Similar reporting requirements in Texas indicate that a person receiving 60 treatments, the number Mr. Thomas has undergone in the past two years, faces a risk of death of approximately 2%. A retrospective study of electroshock in New York would also be illuminating.

Capacity determinations should be made by psychologists, not by psychiatrists, and certainly not by the same psychiatrists whom have determined that a particular treatment is the best or only treatment option. Under the present system, disagreement with the psychiatrist’s opinion is considered evidence of “lack of insight”, which in turn is viewed as a symptom of mental illness. Separating the issue of capacity to make a reasoned treatment decision, which is more of a psychological than a psychiatric question, from the question of agreement or disagreement with the proposed treatment, could effectively address this problem. Legislators could gain a better understanding of this issue if they read the transcript of Mr. Thomas’ hearing.

It is very difficult to devise a legislative approach to guaranteeing that patients will have access to alternatives to electroshock. Increased funding and continued support for psychotherapy and self-help, including research in these areas, is important. However, as long as mental health treatment is ultimately under the control of psychiatrists, it is likely that alternatives to somatic treatments will not be viewed as legitimate. Psychiatry tends to view all mental difficulties as resulting from physical abnormalities in the brain. At the risk of oversimplification to make a point, I’ll claim that in many cases this makes about as much sense as blaming the Intel Pentium processor for Microsoft’s buggy software. Perhaps psychiatry’s “hardware” bias could be offset through giving greater power to both psychologists, who by analogy are “software” experts, and to those of us who have experienced altered state, and know in the most intimate and direct way how somatic treatments and human relationships impact upon us.

July 18, 2001 Hearings on ECT in New York

After releasing a package of 4 bills earlier this week aimed at providing stronger oversight and protections in the use of electroconvulsive treatment in NYS, Assembly Mental Health Committee Chair Marty Luster has announced a date for a second hearing in Albany, intended particularly to gain feedback about the 4 bills and related concerns.

Since the Senate will not have the time to respond before it leaves town this week, it appears very unlikely that there will be a chance to pass final ECT legislation this session.

However, the Senate reportedly is interested in enacting protective legislation on ECT and may indeed introduce its own bills next session, some of which could conceivably corresspond to Assembly proposals.

THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH,
MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES

NOTICE OF PUBLIC HEARING

SUBJECT: Electroconvulsive Therapy (ECT)

PURPOSE: To determine the impact on patient care

ALBANY, NEW YORK

Wednesday July 18, 2001 10:00 AM
Roosevelt Hearing Room C
Legislative Office Building State Street, Second Floor Albany, New York

Electroconvulsive Therapy (ECT), also known as shock treatment, has been a recognized, yet controversial treatment for certain types of mental illness. There are differing opinions as to the appropriateness of ECT and, historically, ECT has been used as a treatment of last resort.

While, New York State does not now require reporting of the use of ECT within the state, it appears that the use of this treatment option is increasing. Patient advocates are concerned that the legal safeguards for informed consent need to be strengthened. The issue of legal safeguards is a particular concern in the case of involuntary, or forced, application of ECT. Recent events regarding patients at the Pilgrim Psychiatric Center have highlighted this issue. According to the New York State Mental Hygiene Legal Services, applications for court ordered ECT increased 73% between 1999 and 2000.

Please see the reverse side for a list of subjects to which witnesses may direct their testimony, and for a description of the bills which will be discussed at the hearing.

Persons wishing to present pertinent testimony to the Committee at the above hearing should complete and return the enclosed reply form as soon as possible. It is important that the reply form be fully completed and returned so that persons may be notified in the event of emergency postponement or cancellation.

Oral testimony will be limited to 10 minutes’ duration. In preparing the order of witnesses, the Committee will attempt to accommodate individual requests to speak at particular times in view of special circumstances. These requests should be made on the attached reply form or communicated to Committee staff as early as possible. In the absence of a request, witnesses will be scheduled in the order in which reply forms are postmarked.

Ten copies of any prepared testimony should be submitted at the hearing registration desk. The Committee would appreciate advance receipt of prepared statements.

In order to further publicize these hearings, please inform interested parties and organizations of the Committee’s interest in hearing testimony from all sources.

In order to meet the needs of those who may have a disability, the Assembly, in accordance with its policy of non-discrimination on the basis of disability, as well as the 1990 Americans with Disabilities Act (ADA), has made its facilities and services available to all individuals with disabilities. For individuals with disabilities, accommodations will be provided, upon reasonable request, to afford such individuals access and admission to Assembly facilities and activities.

MARTIN A. LUSTER
Member of Assembly
Chairman Committee on Mental Health, Mental Retardation and Developmental Disabilities

SELECTED RECENT PROBLEMS TO WHICH WITNESSES MAY DIRECT THEIR TESTIMONY:

1. A. 9081 – Informed consent and related issues

2. A. 9082 – Establishing a temporary advisory council with certain responsibilities

3. A. 9083 – Reporting the incidence of ECT use in New York State

4. A. 9084 – Requiring all facilities that administer ECT to have readily accessible resources for emergency medical treatment

5. What legal safeguards need to be implemented regarding court ordered ECT?

PUBLIC HEARING REPLY FORM

Persons wishing to present testimony at the public hearing on Electroconvulsive Therapy (ECT) are requested to complete this reply form as soon as possible and mail it to:

Carl Letson
Legislative Associate
Assembly Committee on Mental Health, Mental Retardation and Developmental Disabilities
Room 522 – Capitol
Albany, New York 12248
(518) 455-4371
(518) 455-4693 (fax)

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Testimony of Dr. John Friedberg to NY Assembly

TESTIMONY OF JOHN M. FRIEDBERG, M.D., NEUROLOGIST, BEFORE THE MENTAL HEALTH COMMITTEE OF THE NEW YORK STATE ASSEMBLY
MARTIN LUSTER PRESIDING

NYC, May 18, 2001

“In view of the primitive simplicity of their minds, they (the masses) more easily fall victim to a big lie than to a little one, since they themselves lie in little things, but would be ashamed of lies that were too big.” Adolph Hitler. Mein Kampf, Vol.1, Ch. 10, 1924 tr. Ralph Manheim, 1943

INTRODUCTION

My name is John Friedberg. I am a board certified neurologist practicing in Berkeley, California.

I was born in Far Rockaway (NYC) in 1942, graduated Lawrence High School, Yale University and the University of Rochester School of Medicine and for the past twenty years I’ve been seeing patients with every conceivable neurologic problem, from headaches to Huntington’s, in my office and in hospitals.

I am in good standing with my hospitals, professional societies and licensing boards and I’m proud to say I’ve never been successfully sued.

In 1975 I published my book “Shock Treatment Is Not Good For Your Brain” and in 1979 “Shock Treatment, Brain Damage and Memory Loss,” a peer reviewed article in the American Journal of Psychiatry.

I do not believe in mental illness. Depression is no more “the same as diabetes” than heartbreak is the same as a heart attack.

I do not believe in hypothetical diseases of the mind but there is no mistaking damage to the brain. Psychiatric drugs and electroshock inflict real injury in the name of treating fictive maladies. Paul Henri Thomas has Tardive Dyskinesia and heptatitis from psychiatric drugs and amnesia from the ECT.

BASIS FOR OPINIONS

My opinions are based on my years of experience with patients and review of records from all over the country as an expert witness electroshock malpractice cases. They are based on ECT statistics from the six states which mandate reporting; and of necessity, my opinions are based on a lifetime following publications and statements issuing from the small but vocal minority of psychiatrists who believe in ECT and usually nothing but.

Fortunately for me, the believers don’t always believe each other; their data frequently belie their conclusions; and what they actually do contradicts what they say they do. The truth slips out.

As one example: we have known since the 1950′s that confining electroshock to the non-verbal hemisphere (usually the right as in “unilateral non-dominant ECT”) causes less verbal impairment and memory loss than bilateral ECT but the recommendation to begin with non-dominant ECT is honored mostly in the breech.

Another example: the “grandfather” of ECT, Dr. Max Fink claims the rate of memory loss is 1 in 200. He has repeated this so often it sounds like a fact. But Harold Sackeim, Ph.D., just as much an enthusiast and just as aggressive, says Fink’s figure has “no scientific basis.”

Who to believe? My view is that memory loss from ECT is no “side effect;” it’s the main effect and the best studies find it in 100% of subjects.

Incidentally, Dr. Fink didn’t pick the number 1/200 out of thin air. 1/200 has consistently been the death rate from ECT administration – as far back as 1958 and as recently as Texas and Illinois in the 1990′s.

FIVE BIG LIES

Big Lie 1: Dr. Fink tells people that ECT is safer than childbirth. If one out of every 200 women were dying in delivery it would be front page news.

Big Lie 2: ECT doesn’t cause brain damage. One picture will refute that. The illustration below (MRI on the right, CT left, same patient) depicts a large hemorrhage from ECT. Hemorrhages, large and small, cause permanent seizure disorders in some patients.

Image1.jpg

( Weisberg, L. Elliott, D and Mielke, D: Intracerebral Hemorrhage Following Electroconvulsive Therapy (ECT). November 1991, Neurology V 41 p 1849.)

Another MRI study documented a breakdown of the blood brain barrier and cerebral edema – brain swelling – after each and every shock. (Mander et al: British Journal of Psychiatry, 1987: V 151, p 69-71)

Big lie 3: ECT is new and improved. The whole point of ECT is to trigger a convulsion and there is simply no way around the brain’s threshold: 100 joules of energy, a typical “dose,” whether brief pulse, square wave, sine wave, AC or DC, unilateral or bilateral, with or without oxygen equals the energy it takes to light up a 100 watt bulb for one second or drop a 73 pound weight one foot. And it’s the energy that does the damage.

Big lie 4: ECT is a “Godsend” (Fink again). In March of this year, Dr. Sackeim published a study in JAMA showing a “relapse rate” of 84% within six months of stopping ECT. It is no coincidence that improvement ceases just as the concussive effects are finally waning. Sackeim’s solution?: more ECT. Call it “maintenance” or call it “continuation,” just don’t stop. (JAMA. 2001;285:1299-1307).

Big lie 5: No one knows how ECT works. On the contrary, everyone knows how ECT works. It works by erasing memory and terrifying people.

CONCLUSION

ECT isn’t back – it never went away. It’s more common than appendectomy.

What has happened is that it’s advocates have grown more arrogant and the number of patients forced to undergo ECT against their will is increasing.

This was brought to public attention by Paul Henri Thomas fighting for his life and his mind at Pilgrim State Hospital on Long Island. Over the past two years he has been subjected to 60 shocks and a judge just ordered up 40 more. The newspapers state the Mr. Thomas was born in Haiti, emigrated from oppression and was granted American citizenship.

To be held down, drugged and forcibly administered convulsive dose after convulsive dose of electroshock to the head: can anyone think of a greater assault on a human being’s rights – short of death – in the whole world? And it’s happening here in the land of the free. That’s not acceptable.

We have had 60 years of poignant testimony from eloquent victims of electroshock. Ernest Hemingway complained it ruined his memory and put him out of business. He killed himself within weeks of concluding a second course of ECT. George Orwell ends 1984 with his protagonist being forced to love Big Brother on an electroshock table.

I urge you to declare a moratorium on electroconvulsive therapy until it can be proven safe by evidence, not proclamation.

I urge you to declare a moratorium on electroconvulsive therapy until patients can be guaranteed free and informed choice.

Thank you.

Testimony of Leonard Roy Frank to NY Assembly

TESTIMONY OF LEONARD ROY FRANK AT A PUBLIC HEARING ON ELECTROCONVULSIVE “TREATMENT” BEFORE THE MENTAL HEALTH COMMITTEE OF THE NEW YORK STATE ASSEMBLY, MARTIN A. LUSTER (CHAIRMAN), MANHATTAN, 18 MAY 2001

My name is Leonard Roy Frank, from San Francisco, and I’m here representing the Support Coalition International based in Eugene, Oregon. SCI unites 100 sponsoring groups who oppose all forms of psychiatric oppression and support humane approaches for assisting people said to be “mentally ill.” This year the United Nations recognized Support Coalition International as “a Non-Governmental Organization with Consultative Roster Status.”

I’ve taken the epigraph for my presentation from a talk on the Holocaust by Hadassah Lieberman, the wife of Sen. Joseph Lieberman, which was rebroadcast on C-SPAN last month. She quoted the Bal Shem Tov, founder of Hasidism: “In remembrance lies the secret of redemption.”

INTRODUCTION

Some personal background is relevant to the substance of my testimony: I was born in 1932 in Brooklyn and was raised there. After graduating from the Wharton School at the University of Pennsylvania, I served in the U.S. Army and then worked as a real estate salesman for several years. In 1962, three years after moving to San Francisco, I was diagnosed as a “paranoid schizophrenic” and committed to a psychiatric institution where I was forcibly subjected to 50 insulin-coma and 35 electroconvulsive procedures.

This was the most painful and humiliating experience of my life. My memory for the three preceding years was gone. The wipe-out in my mind was like a path cut across a heavily chalked blackboard with a wet eraser. Afterwards I didn’t know that John F. Kennedy was president although he had been elected three years earlier. There were also big chunks of memory loss for events and periods spanning my entire life; my high school and college education was effectively destroyed. I felt that every part of me was less than what it had been.

Following years of study reeducating myself, I became active in the psychiatric survivors movement, becoming a staff member of Madness Network News (1972) and co-founding the Network Against Psychiatric Assault (1974) — both based in San Francisco and dedicated to ending abuses in the psychiatric system. In 1978 I edited and published The History of Shock Treatment. Since 1995, three books of quotations I edited have been published: Influencing Minds, Random House Webster’s Quotationary, and Random House Webster’s Wit ?

Over the last thirty-five years I have researched the various shock procedures, particularly electroshock or ECT, have spoken with hundreds of ECT survivors, and have corresponded with many others. From all these sources and my own experience, I have concluded that ECT is a brutal, dehumanizing, memory-destroying, intelligence-lowering, brain-damaging, brainwashing, life-threatening technique. ECT robs people of their memories, their personality and their humanity. It reduces their capacity to lead full, meaningful lives; it crushes their spirits. Put simply, electroshock is a method for gutting the brain in order to control and punish people who fall or step out of line, and intimidate others who are on the verge of doing so.

BRAIN DAMAGE

Brain damage is the most important effect of ECT. Brain damage is, in fact, the 800-pound gorilla in the living room whose existence psychiatrists refuse to acknowledge, at least publicly. Nowhere is this more clearly illustrated than in the American Psychiatric Association’s 2001 Task Force Report on The Practice of Electroconvulsive Therapy: Recommendations for Treatment, Training, and Privileging, 2nd ed. (p. 102), which states that “in light of the accumulated body of data dealing with structural effects of ECT, ‘brain damage’ should not be included [in the ECT consent form] as a potential risk of treatment.”

But 50 years ago, when some proponents were careless with the truth about ECT, Paul H. Hoch, co-author of a major psychiatric textbook and New York State’s Commissioner of Mental Hygiene, commented, “This brings us for a moment to a discussion of the brain damage produced by electroshock…. Is a certain amount of brain damage not necessary in this type of treatment? Frontal lobotomy indicates that improvement takes place by a definite damage of certain parts of the brain.” (“Discussion and Concluding Remarks,” Journal of Personality, 1948, vol. 17, pp. 48-51)

More recently, neurologist Sidney Sament backed the brain-damage charge in a letter to Clinical Psychiatry News (March 1983, p. 11):

“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….

In all cases the ECT ‘response’ is due to the concussion-type, or more serious, effect of ECT. The patient ‘forgets’ his symptoms because the brain damage destroys memory traces in the brain, and the patient has to pay for this by a reduction in mental capacity of varying degree.”

Additional evidence of ECT-caused brain damage was published in an earlier APA Task Force Report on Electroconvulsive Therapy (1978). Forty-one percent of a large group of psychiatrists responding to a questionnaire agreed with the statement that ECT produces “slight or subtle brain damage.” Only 28 percent disagreed (p. 4).

And finally there is the evidence from the largest published survey of ECT-related deaths. In his Diseases of the Nervous System article titled “Prevention of Fatalities in Electroshock Therapy” (July 1957), psychiatrist David J. Impastato, a leading ECT proponent, reported 66 “cerebral” deaths among the 235 cases in which he was able to determine the likely cause of death following ECT (p. 34).

MEMORY LOSS

If brain damage is electroshock’s most important effect, memory loss is its most obvious one. Such loss can be, and often is, devastating as these statements from electroshock survivors indicate:

“My memory is terrible, absolutely terrible. I 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 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.”

“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.” (Lucy Johnstone, “Adverse Psychological Effects of ECT,” Journal of Mental Health, 1999, vol. 8, p. 78)

Electroshock proponents are dismissive of the memory problems associated with use of their procedure. The following is from the sample ECT consent form in the APA’s 2001 Task Force Report (pp. 321-322): “The majority of patients state that the benefits of ECT outweigh the problems with memory. Furthermore, most patients report that their memory is actually improved after ECT. Nonetheless, a minority of patients report problems in memory that remain for months or even years.” The text of the Report supplies flimsy documentation for the claims in the first two sentences, but the third sentence, at least, is closer to the truth than coverage of the same point in the sample consent form of the first edition of the APA’s Task Force Report (1990, p. 158) which reads, “A small minority of patients, perhaps 1 in 200, report severe problems in memory that remain for months or even years.” And even the more recent Report underestimates the prevalence of memory loss among ECT survivors.

The vast majority of the hundreds of survivors I’ve communicated with over the last three decades experience moderate-to-severe amnesia going back two years and more from the time they underwent ECT. That these findings do not appear in published ECT studies may be accounted for by the bias of electroshock investigators, virtually all of whom are ECT proponents, by denial (from ECT-induced brain damage) on the part of participants and their fear of punitive sanctions if they were to report the extent and persistence of their memory loss, and finally by the difficulty in having anything published in a mainstream professional journal that seriously threatens the vested interests of an important segment of the psychiatric community.

DEATH

The 2001 Task Force Report on ECT states, “a reasonable current estimate is that the rate of ECT-related mortality is 1 per 10,000 patients” (p. 59). But some studies suggest that the ECT death rate is about one in 200. This rate, however, may not reflect the true situation because now elderly persons are being electroshocked in growing numbers: statistics based on California’s mandated ECT reporting system indicate that upwards of 50 percent of all ECT patients are 60 years of age and older.

Because of infirmity and disease, the elderly are more vulnerable to ECT’s harmful, and sometimes lethal, effects than younger people. A 1993 study involved 65 patients, 80 and older, who were hospitalized for major depression. Here are the facts drawn from this study: The patients were divided into 2 groups. One group of 37 patients was treated with ECT; the other group, of 28 patients, with antidepressants. After 1 year, 1 patient among the 28, or 4 percent, in the antidepressant group was dead; while in the ECT group 10 patients among the 37, or 27 percent, were dead. (David Kroessler and Barry Fogel, “Electroconvulsive Therapy for Major Depression in the Oldest Old,” American Journal of Geriatric Psychiatry, Winter 1993, p. 30)

BRAINWASHING

The term “brainwashing” came into the language during the early 1950s. It originally identified the technique of intensive indoctrination, combining psychological and physical pressure, developed by the Chinese for use on political dissidents following the Communist takeover on the mainland and on American prisoners of war during the Korean War. While electroshock is not used overtly against political dissidents, it is used throughout most of the world against cultural dissidents, nonconformists, social misfits and the unhappy (the troubling and the troubled), whom psychiatrists diagnose as “mentally ill” in order to justify ECT as a medical intervention.

Indeed, electroshock is a classic example of brainwashing in the most meaningful sense of the term. Brainwashing means washing the brain of its contents. Electroshock destroys memories and ideas by destroying the brain cells which store them. As psychiatrists J. C. Kennedy and David Anchel, both ECT proponents, described the effects of this tabula rasa “treatment” in 1948, “Their minds seem like clean slates upon which we can write” (“Regressive Electric-shock in Schizophrenics Refractory to Other Shock Therapies,” Psychiatric Quarterly, vol. 22, pp. 317-320). Soon after published accounts of the erasure of 18 minutes from secret White House audiotapes during the Watergate investigation, another electroshock psychiatrist reported, “Recent memory loss [from ECT] could be compared to erasing a tape recording.” (Robert E. Arnot, “Observations on the Effects of Electric Convulsive Treatment in Man–Psychological,” Diseases of the Nervous System-, September 1975, pp. 449-502)

For these reasons, I have proposed that the procedure now called electroconvulsive treatment (ECT) be renamed electroconvulsive brainwashing (ECB). And ECB may be putting it too mildly. We might ask ourselves, Why is it that 10 volts of electricity applied to a political prisoner’s private parts is seen as torture while 10 or 15 times that amount applied to the brain is called “treatment”? Perhaps the acronym “ECT” should be retained and have the “T” stand for torture – electroconvulsive torture.

SEVEN REASONS

If electroshock is an atrocity, as I maintain, how can its use on more than 10 million Americans since being introduced more than 60 years ago be explained? Here are seven reasons:

1. ECT is a money-maker. Psychiatrists specializing in ECT earn $300,000-500,000 a year compared with other psychiatrists whose mean annual income is $150,000. An in-hospital ECT series costs anywhere from $50,000-75,000. One-hundred thousand Americans are believed to undergo ECT annually. Based on this figure, I estimate that electroshock is a $5 billion-a-year industry.

2. Biological model. ECT reinforces the psychiatric belief system, the linchpin of which is the biological model of mental illness. This model centers on the brain and reduces most serious personal problems down to genetic, physical, hormonal, and/or biochemical defects which call for biological treatment of one kind or another. The biological approach covers a spectrum of physical treatments, at one end of which are psychiatric drugs, at the other end is psychosurgery (which is still being used, although infrequently), with electroshock falling somewhere between the two. The brain as psychiatry’s focus of attention and treatment is not a new idea. What psychiatrist Carl G. Jung wrote in 1916 applies today: “The dogma that ‘mental diseases are diseases of the brain’ is a hangover from the materialism of the 1870s. It has become a prejudice which hinders all progress, with nothing to justify it.” (“General Aspects of Dream Psychology,” The Structure and Dynamics of the Psyche, 1960) Eighty-five years later, there’s still nothing in the way of scientific evidence to support the brain-disease notion. The tragic irony is that the psychiatric profession makes unsubstantiated claims that mental illness is caused by a brain disease while hotly denying that electroshock causes brain damage, the evidence for which is overwhelming.

3. The myth of informed consent. While outright force is seldom used, genuine informed consent is never obtained because ECT candidates can be coerced and because electroshock specialists refuse to accurately inform ECT candidates and their families of the procedure’s nature and effects. ECT specialists lie not only to the parties vitally concerned, they lie to themselves and to each other. Eventually they come to believe their own lies, and when they do, they become even more persuasive to the na�ve and uninformed. As Ralph Waldo Emerson wrote in 1852, “A man cannot dupe others long who has not duped himself first.” Here is an instance of evil so deeply ingrained that it’s no longer recognized as such. Instead we see such outrages as ECT specialist Robert E. Peck titling his 1974 book, The Miracle of Shock Treatment and Max Fink, who for many years edited the leading professional journal in the field, now called The Journal of ECT, telling a Washington Post reporter in 1996, “ECT is one of God’s gifts to mankind.” (Sandra G. Boodman, “Shock Therapy: It’s Back,” 24 September, Health [section], p.16)

4. Backup for treatment-resistant psychiatric-drug users. Many, if not most, of those being electroshocked today are suffering from the ill effects of a trial run or long-term use of antidepressant, anti-anxiety, neuroleptic, and/or stimulant drugs, or combinations thereof. When such effects become obvious, the patient, the patient’s family, or the treating psychiatrist may refuse to continue the drug-treatment program. This helps explain why ECT is so necessary in modern psychiatric practice: it is the treatment of next resort. It is psychiatry’s way of burying their mistakes without, except rarely, killing the patient. Growing use and failure of psychiatric-drug treatment has forced psychiatry to rely more and more on ECT as a way of dealing with difficult, complaining patients, who often are hurting more from the drugs than from their original problems. And when the ECT fails to “work,” there’s always — following an initial series — more ECT (prophylactic ECT administered periodically to outpatients), or more drug treatment, or a combination of the two. That drugs and ECT are for practical purposes the only methods psychiatry offers to, or imposes on, those who seek treatment or for whom treatment is sought is further evidence of the profession’s clinical and moral bankruptcy.

5. Lack of accountability. Psychiatry has become a Teflon profession: criticism, what little there is of it, doesn’t stick. Psychiatrists routinely carry out brutal acts of inhumanity and no one calls them on it — not the courts, not the government, not the people. Psychiatry has become an out-of-control profession, a rogue profession, a paradigm of authority without responsibility, which is a good working definition of tyranny.

6. Government support. Not only does the federal government stand by passively as psychiatrists continue to electroshock American citizens in direct violation of some of their most fundamental freedoms, including freedom of conscience, freedom of thought, freedom of religion, freedom of speech, freedom from assault, and freedom from “cruel and unusual punishment,” the government also actively supports electroshock through the licensing and funding of hospitals where the procedure is used, by covering ECT costs in its insurance programs (including Medicare), and by financing ECT research (including some of the most damaging ECT techniques ever devised). A recently published study provides an example of such research. The ECT experiment, which was conducted at Wake Forest University School of Medicine/North Carolina Baptist Hospital, Winston-Salem, between 1995 and 1998, reports the use of electric current at up to 12 times the individual’s convulsive threshold on as many as 36 depressed patients. The destructive element in ECT is the current that causes the convulsion: the more electrical energy, the greater the brain damage. This reckless disregard for the safety of ECT subjects was supported by grants from the National Institute of Mental Health. (W. Vaughn McCall, David M. Begoussin, Richard D. Weiner, and Harold A. Sackeim, “Titrated Moderately Suprathreshold vs. Fixed High-Dose Right Unilateral Electroconvulsive Therapy: Acute Antidepressant and Cognitive Effects,” Archives of General Psychiatry, May 2000, pp. 438-444)

7. Electroshock could never have become a major psychiatric procedure without the active collusion and silent acquiescence of tens of thousands of psychiatrists. Many of them know better; all of them should know better. The active and passive cooperation of the media has also played an essential role in expanding the use of electroshock. Amidst a barrage of propaganda from the psychiatric profession, the media passes on the claims of ECT proponents almost without challenge. The occasional critical articles are one-shot affairs, with no follow-up, which the public quickly forgets. With so much controversy surrounding this procedure, one would think that some investigative reporters would key on to the story. But it’s happened only rarely up to now. And the silence continues to drown out the voices of those who need to be heard. I’m reminded of Martin Luther King’s 1963 “Letter from Birmingham City Jail,” in which he wrote “We shall have to repent in this generation not merely for the vitriolic words and actions of the bad people, but for the appalling silence of the good people.”

CONCLUSION

As noted earlier, I’m here representing the Support Coalition International. But more significantly, I’m also here representing the true victims of electroshock: those who have been silenced, those whose lives have been ruined, and those who have been killed. All of them bear witness through the words I have spoken here today.

I’ll close with a short paragraph, in way of summary, and a poem I wrote in 1989.

If the body is the temple of the spirit, the brain may be seen as the inner sanctum of the body, the holiest of holy places. To invade, violate, and injure the brain, as electroshock unfailingly does, is a crime against the spirit and a desecration of the soul.

Aftermath

With “therapeutic” fury
search-and-destroy doctors
using instruments of infamy
conduct electrical lobotomies
in little Auschwitzes called mental hospitals

Electroshock specialists brainwash
their apologists whitewash
as silenced screams echo
from pain-treatment rooms
down corridors of shame.

Selves diminished
we return
to a world of narrowed dreams
piecing together memory fragments
for the long journey ahead.

From the roadside
dead-faced onlookers
awash in deliberate ignorance
sanction the unspeakable –
Silence is complicity is betrayal.

ECT practices in the community

By
J. Prudic, M. Olfson, and H.A. Sackeim

Summary

Background: Controlled studies have demonstrated that ECT technique impacts on the efficacy and cognitive side effects. However, there is little information on the extent of variation in how ECT is practiced in community settings.

Introduction: Good quality of care implies provision of care that is technically competent. Due to concerns about the possibility of widespread use of suboptimal technique, the national Institutes of Health Consensus Conference Panel called for a National survey of ECT practice in the U.S. This was never performed.

Methods. A survey of practice patterns was conducted at ECT facilities in the greater New York City metropolitan area,

Findings:

The majority of patients were greater than 60 years of age.
The forms of ECT administered varied considerably (eg. 11% of patients received sine wave stimulation; approximately 75% were treated with bilateral ECT)
EEG monitoring was not used in 14% of the facilities
Monitoring of the motor seizure with the cuff technique was not conducted in 53% of the facilities
There was considerable variability in whether patients were routinely evaluated with respect to cognitive status, before, during, or after ECT.

Discussion. The marked departures from the field’s standard of care and the wide variability in how ECT is conducted undoubtedly raise public health concerns. This study did not audit actual practices, but relied on the report of the Directors of ECT Services … discrepancies were found between the survey results and the review of the medical records. The results of this chart review suggested that if there were a bias in the findings of the survey, it was in the direction of the reports by ECT service directors being more in line with guideline recommendations than the actual practices of the facilities.

Conclusion: There is marked variability in the nature of ECT practices in community settings. The extent to which this variability impacts on the benefits and risks of ECT needs to be examined.

John Breeding Testimony to New York Assembly

Testimony to New York Assembly Hearing on Electroshock
July 18, 2001

John Breeding, Ph.D.
2503 Douglas St.
Austin, Texas 78741
(512) 326-8326
www.wildestcolts.com

My name is John Breeding. I am a psychologist from Austin, Texas. I testified in New York at the hearing in May on forced electroshock, and I am grateful to Assemblyman Luster for his enlightened leadership and determination to investigate electroshock practice in New York State. I am also grateful to Assemblyman Ortiz for his resolve and leadership in proposing electroshock legislation, and to all the other committee members for their concern about this issue.

Electroshock is practiced throughout the United States. Texas, where I come from, has perhaps the strongest controls of any state, including a reporting law, an emphatic demand for informed consent, and a ban on the treatment for children under 16. New York is unique, however, in that key research institutes, such as those at Columbia University and the New York Psychiatric Institute are located here, as are the electroshock industry leaders who work at those institutions. So the Assembly’s acknowledgment of the need for investigation and consideration of legislative oversight and control of psychiatric electroshock practice is especially important.

As a psychologist, I have worked with a number of victims of electroshock. I have been on the advisory board of the World Association of Electroshock Survivors, an organization consisting of individuals who have undergone electroshock and who are now working to ban this procedure. I implore you to understand the significance of this group and others like it, such as the Committee for Truth in Psychiatry, based in New York City and the larger Support Coalition International. Electroshock Survivors from these groups are actively organizing to outlaw a “treatment” which their doctors declared was necessary and would help them, even–in some cases–to the point of forcing it on them against their will! As I said in my earlier testimony, if thousands of the patients receiving a standard medical procedure for a physical illness had organized themselves to ban that procedure, there would surely be a serious reevaluation of the procedure and probably a complete moratorium until a proper investigation was completed.

Electroshock and Informed Consent

Today, per Assemblyman Luster’s request, I will focus on informed consent.
A recent article of mine, called, “Electroshock and Informed Consent,” is attached to this testimony. The article cites research that substantiates all of its points, including the following:

Electroshock causes death. Psychiatry often says 1 in 10,000. The truth is a much higher death rate; some studies show 1 in 200.

Electroshock always causes brain damage. The question is only how much.

Electroshock always causes memory loss. The question is only how much.

Electroshock does not prevent suicide.

Electroshock has no beneficial effects. (The supposed short-term benefits are in reality the immediate sign of brain damage.)

Electroshock often results in cardiovascular complications or epilepsy.

Electroshock poses extra risks for the elderly, who bear the brunt of the treatments, including higher mortality rates.

Genuine informed consent must include the seven facts cited above, and a good deal more. Regrettably, even the appearance of informed consent does not guarantee its reality. Let me briefly describe four of the many ways in which psychiatry systematically violates informed consent.

First, there is denial and minimization of harmful effects. The American Psychiatric Association 2001 Task Force Report on The Practice of Electroconvulsive Therapy states that “in light of the accumulated body of data dealing with structural effects of ECT, brain damage should not be included [in the ECT consent form] as a potential risk of treatment”(p. 102). This same report also states that, “a reasonable current estimate is that the rate of ECT-related mortality is 1 per 10,000 patients” (p. 59). The truth, as I said earlier, is a much higher rate. So the APA recommends that patients be misinformed about two of electroshock’s most serious potential risks. This is gross deception. Psychiatry’s professional organization gives no credence to the numerous human autopsies, brainwave studies, animal studies, clinical observations, and reports from electroshock subjects clearly demonstrating electroshock’s brain-damaging effects. Nor does the APA offer any documentation substantiating its claim that electroshock’s mortality rate is “1 per 10,000 patients.”

The second way that informed consent exists only in name is that even minimal and inadequate guidelines for the administration of ECT are routinely and systematically violated. For example, a 1995 report by the Wisconsin Coalition for Advocacy thoroughly documents pervasive and systematic violations of that state’s informed consent guidelines on ECT. A 1987 study by Benedict and Saks of the regulation of professional behavior regarding ECT in Massachusetts showed that “approximately 90% of ECT patients received treatment inappropriately, suggesting that the regulation of ECT administration is ineffective.” Interestingly, the authors also reported that “the more familiar a psychiatrist was with threatened or instituted lawsuits involving ECT, and the more likely a lawsuit was thought to be, the greater was his or her departure from the guidelines.” From this statement alone, I hope you will see why your investigation, control and oversight are so crucial. Psychiatry is incapable of policing itself.

A third rarely mentioned point stems from the fact that the legal obligation under informed consent is to provide the patient with all the information relevant to their decision-making–not just about the treatment in question, but also about their condition. Psychiatric patients are never told that their alleged disease is theoretical or metaphorical. To say or even imply that what the patient has is biologic and a disease when there is no such proof (as in all psychiatric “diseases” for which electroshock is administered) is an egregious deception that makes a mockery of informed consent. That this has become the “standard of practice” in psychiatry does not excuse it.

Fourth, and pragmatically crucial, is that many people become victims of this so-called “treatment” at a time in life when they are extremely vulnerable. At vulnerable times, people desperately need to trust and rely on others for help. Reaching out, they need complete safety and support. Often their only hope in such times is to trust the wisdom and guidance of the professionals to whom they turn for help. Informed consent is a fine principle, but in practice it is not a protection.

Despite my conviction that true informed consent is not tenable given the underpinnings of coercion and misinformation in psychiatry, I have attached to my testimony a model of authentic informed consent. This form is excerpted from my previously mentioned article on the subject, and clearly states the information necessary for legitimate consent. It also, by the way, describes minimum standards for determining mental competence, as prerequisites for informed consent.

Competency/Capacity

Psychiatry argues that labels of “mental illness” or “emotional disability” make legitimate the designation of people as incompetent to exercise their right to informed consent. Psychiatry says this justifies the use of force. In fact, it does not! I urge each of you assembly members to seriously consider this flawed and dangerous assumption. Your own state supreme court, in Rivers v Katz regarding forced drugging, makes it clear that the presence of mental illness or emotional disability does not necessarily mean the patient is lacking the capacity to choose treatment. I quote: “It is clear that neither mental illness nor institutionalization per se can stand as a justification for overriding an individual’s fundamental right to refuse anti-psychotic medication on either police power or parens patriae [incapacity] grounds.” The state–according to Rivers v Katz– bears the burden of demonstrating by “clear and convincing evidence the patient’s incapacity to make a treatment decision.” This fundamental right is based on the “liberty interest” protected by the New York State Constitution.

In Rivers v Katz, the Court also carefully observed that lack of capacity may not be inferred even if the patient disagrees with the psychiatrist’s clinical judgment. This is very important because a current review of 28 articles comparing patients’ and staff members’ attitudes towards treatment (Roe et al, 2001) shows clearly that there is a consistent disagreement over time and across studies between staff and patients on treatment issues. The authors of this review concluded that “the disagreement might have more to do with the fundamental difference between being a patient and a staff member rather than a patient’s cognitive deficits or psychopathology.” Any legislation regarding capacity must honor Rivers v Katz and preclude the use of a psychiatric diagnosis as justification of force. The judges in Rivers v Katz wrote, “It is well accepted that mental illness often strikes only limited areas of functioning leaving other areas unimpaired, and consequently, many mentally ill persons retain the capacity to function in a competent manner.”

Society generally respects the right of citizens to refuse treatment of physical illness, however life-threatening. This, as you all know, is not the case for “mental illness.” The cases of Paul Henry Thomas, Adam Szysko, Pam S. and others here in New York have made this fact abundantly clear. As I did in May, I continue to urge you to put a moratorium on forced electroshock.

With all this in mind, I respectfully suggest that the following clauses be added to your Bill number A09081 on electroshock and informed consent:

a) Informed consent must be given for each individual treatment;
b) Consent may be given for no more than one treatment at a time;
c) Patient may refuse treatment at any time;
d) Patient may withdraw from treatment at any time, including between the time he or she gave consent and administration of the procedure previously consented to;
e) Competency must be assessed every single time consent is requested; (suggest standard from proposed model)
f) Every patient has the absolute right to refuse electroshock. If patient refuses to give consent (for whatever reason or for no reason at all), there can be no administration of electroshock;
g) If patient is judged to lack capacity, there can be no administration of electroshock; (The reason for this is the well-documented fact that electroshock impairs cognitive capacity. If someone lacks capacity, all emphasis should be on returning him or her to capacity by helpful restorative means; therefore, no forced electroshock.)

Re Bill A09083 of temporary advisory council

Consistent with my opinion that without capacity there can be no legally administered electroshock, I recommend striking section 3f of Bill number 9083, on the procedure for surrogate consent. This should be illegal. My one other recommendation for this committee is that it should be more weighted to electroshock survivors, and should include professionals who are critics of electroshock.

RE bill A09082 on reporting law

As I have just stated, court-ordered electroshock should be illegal. Therefore, I recommend striking section A2 that counts the number of patients for whom a court order was sought. There should be none.

Electroshock is unnecessary

It has been said that a bad solution is one that acts destructively on the larger pattern or system in which it is contained. A good solution, then, is one that is good for the whole. What is good for the brain is good for the body. What is good for the body is good for the mind is good for the soul. Granted sometimes a part is sacrificed for the whole. A malignant brain tumor or a gangrenous leg may be removed to save a life. But we know that such remedies are desperate, irreversible, and destructive; it is impossible to improve the body by these actions. Electroshock is like these surgeries in being a desperate, irreversible and destructive act.

Electroshock does not save lives, and is absolutely not necessary. There are many causes for depression. Some are physical and respond well to legitimate medical treatments for conditions such as diabetes, liver or kidney problems, or thyroid malfunction. Some are related to psychological trauma or grief and loss, and respond well to emotional healing techniques. Many are social and respond well to closeness and affection and renewal of community. These are good solutions, for the whole individual, and for the community, including our precious elders whom psychiatrists are most wont to electroshock.

Let me conclude with what I think is an arresting image. In her novel, Beloved, Toni Morrison describes the farm where her character grew up as a slave: “It never looked as terrible as it was and it made her wonder if Hell was a pretty place too. Fire and brimstone all right, but hidden in lacy groves. Boys hanging from the most beautiful sycamores in the world.”

Boys hanging dead from the most beautiful sycamores in the world.
Unconscious, brain-damaged patients lying on electroshock tables in the most impressive psychiatric institutions doing electroshock research funded by the government of the United States through the most prestigious National Institutes of Mental Health.

Boys hanging, dead.
Victims of forced electroshock, brains damaged, memory lost, potential healing suppressed, sometimes dead.

At the dawn of the 20th century in the United States, a black Southerner died at the hands of a white mob more than once a week. Society accepted the practice; some newspapers not only covered lynchings, but even advertised them. At the dawn of the 21st century, psychiatrists electroshock about 2,000 United States citizens every week. Society accepts the practice; the media not only covers it, but even promotes it.

Just as brave leaders and activists won civil rights legislation that lead to a massive decline in the dehumanizing and degrading practice of racism, activists are now challenging the brutal practice of electroshock. Through the good efforts of this committee, New York’s legislature now has the opportunity to enact a landmark law regulating and restricting the use of electroshock which hopefully will lead one day to the abolition of this procedure, and thereby the establishment of a more just and humane society. Thank you.

References

American Psychiatric Association (2001) The Practice of Electroconvulsive Therapy: Recommendations for Treatment, Training, and Privileging, Second Edition.

Benedict, A. & Saks, M. (1987) The regulation of professional behavior: Electroconvulsive therapy in Massachusetts. The Journal of Psychiatry and Law, 15,2,247-275.

Roe, D., Lereya, J. & Fennig, S. (2001) Comparing patients’ and staff members’ attitudes: Does patients’ competence to disagree mean they are not competent. The Journal of Mental and Nervous Disease, 189:307-310.

Wisconsin Coalition for Advocacy (1/17/95) Informed consent for electroconvulsive therapy: A report on violations of patients’ rights by St. Mary’s Hospital, Madison, WI. WCA, 16 N. Carroll St., Madison, WI. 53703.

New York legislative analysis – bills introduced by Marty Luster

While the bills introduced in New York by Marty Luster have some merit, there are some real problems as well. If you can take the time, particularly if you are a New York voter, please voice your concerns to Marty Luster’s office and let them know what you think.

Following is an analysis of the bills by Tina Minkowitz:

Hi, some of you may have seen the NYAPRS email from Harvey today urging everyone to call assembly representatives & urge passage of the electroshock bills.

I want to just sound a note of caution:

First, please familiar yourselves with the bills & decide for yourself whether or not they are worth supporting. some activists including the leader of CTIP, an organization of electroshock survivors (Linda andre) think that 9082 is overall capable of doing more harm than good, especially since the advisory council is now mandated to come up with a consent form in addition to its other tasks. if this bill passes, activists will have to work very hard – that means us – to get seats on the advisory council and to neutralize impact of shock shrinks especially those who have financial interest in the machines. we need to start working/thinking/preparing on this now. – and, if you are calling your representatives, you can tell them your opinion – if you don’t like 9082, tell them so.

9081 In my opinion is still better than nothing but nowhere near a glowing transformation. main advances are requirement of capacity determination prior to seeking informed consent (but no explicit requirement that they can’t talk to you at all about shock before doing the capacity evaluation) & that if you have a “valid advance directive” they cannot even take you to court to force shock, the advance directive controls.

Problem with definition of advance directive inserted just a couple of days ago: definition refers to article 29-c of public health law, which may mean that only the health care proxy type of advance directive will be respected here. i called mike seereiter of luster’s office yesterday & luster apparently has decided to ignore this problem if they are moving to the floor vote now. that is too bad & maybe we can have some impact afterwards, but if you have a friendly relationship with representative or senator you can bring this up as well.

Again, please make your own decision about 9081 & remember that all of what looks “good” in the part about the court determination if they want to do forced shock, is already the law under Rivers v. Katz – & that the “informed consent” provisions are weak.

9083 is potentially useful reporting, not perfect, again check it out for yourself. overall i think this is worth supporting.

9084 has weaknesses too – primarily that it’s targeted at prohibiting shock in doctors offices rather than looking at whether the state hospitals are prohibited because they don’t have emergency medical facilities on site.

So – please don’t take NYAPRS’s word for this, or Marty Luster’s. Luster is doing a worthwhile effort & there are some good things here but do your own careful evaluations & be prepared to help plan for the next phase.

——————

Hi all,

Not sure what has been put out on this list yet, I understand there is an email circulating that calls the bills “pro-shock” & there is also the daily request from NYAPRS to support all the bills.

Look on NY assembly website, http://www.assembly.state.ny.us – go to bill search & type in 9081, 9082, 9083 & 9084 to look at the bills – the first page that comes up for each bill will be history of actions & justification, you have to click on “see bill text” in upper left hand corner to see the actual bill.

Would like to offer my opinion on it, in case anybody is interested – which is basically that with the exception of 9082, the bills are better than what we have now & offer some minimal protections.

The NY bills do not go as far as Texas in creating meaningful protections for informed consent. in fact that is an understatement, the informed consent provisions are among the weakest components of the bills. (but, on forced shock & reporting there are a few meaningful provisions – see below.) there is nothing required by the legislation to be disclosed – unlike the Texas legislation, which spells out what has to be included in the informed consent disclosures – particularly, the possibility of irrevocable memory loss & the possibility of death. NY’s bills refer the content of this disclosure to an advisory council (disclosure of “benefits”, “adverse effects” & “less intrusive alternatives” is required in general terms by 9081, & 9082 says that the advisory council is to draft this information) – & the advisory council will be appointed & begin work within 90 days of the bill being signed into law. while people who have experienced shock are required to be represented on the council, the council has 15 people on it & there is no requirement of any proportion of shock survivors to psychiatrists, & no requirement of balance of views either in composition of the council or in what they are required to consider or produce.

The bills also require a facility to give people a list of resources, & access to those resources, to learn more information about electroshock. the content of this list is also referred to the advisory council.

(&, Texas also prohibits shock against minors – which NY’s bills do not – instead this issue too is referred to the advisory council.)

Linda Andre of Committee for Truth in Psychiatry, the organization of shock survivors that people join by endorsing a proposed consent form, opposes the advisory council bill, 9082 – because it is unlikely that advocates of “truth” in informed consent about shock will get their voices heard. some advocates i have talked to think it is possible to get something better than what the Office of Mental Health would do otherwise, from the Advisory Council. personally, i am particularly concerned that the Advisory Council will give a seal of approval to bad disclosure information – this was added to their responsibilities late in the game, and it is the single most dangerous thing they can do.

What the bills do that is potentially protective is the following:

9081:
1) Establish a new protocol whereby the psychiatric facility does a capacity evaluation before they seek informed consent for shock. this fits neatly within NY’s existing law, which emphasizes the issue of “capacity” to refuse forced “treatment”. (in fact, don’t be deceived by the appearance of lots of legal language about burden of proof in the part of 9081 that talks about the court hearing on forced electroshock, this is already NY law – why they put it in is anybody’s guess, but my suspicion is to make it look like they are doing more than they really are.)

What this will accomplish seems to me like an extension of what it accomplishes to have the psychiatrists seek a court order for forced shock (or drugs) instead of just going ahead & doing it – it puts up obstacles & makes them think twice about it. if this is used honestly (a big if) the psychiatrists will have to take the gamble that someone will refuse shock if they are found competent, or else have to go to court on everybody if they find them incompetent.

2) The protocol has some nice features in that an independent psychologist (not an employee of the facility) has to evaluate capacity as well as the treating psychiatrist. MHLS & the person involved have to be notified of a proposed determination of lack of capacity & have the opportunity for input before the clinical director of the institution makes the final determination of lack of capacity. how the independent psychologists will be chosen in every case is not addressed by the law, which is a weakness in terms of assuring actual independence.

3) If a person has a “valid advance directive” then even if they are incompetent, the facility cannot take them to court to force shock. this is a big thing & will be the best way to refuse shock in NY if the bill passes. the most recent addition to the bill, however, is a provision defining “valid advance directive” with reference to the law governing health care proxies. so, to be safest, people who want to refuse shock should execute a health care proxy in accordance with all the requirements of that law – Public Health law Article 29-c. (a health care proxy names an agent to make “health care” decisions on your behalf if you are deemed incompetent & can also give specific instructions that the agent has to follow – e.g., no consent to electroshock; the other kind of advance directive only gives instructions.)

4) Some informed consent protections contained in 9081:

If a person who has been determined competent refuses, the facility cannot further attempt to administer shock. Seems to mean, leave the person alone if they say no.

Having access to resources for information will be good only if the information includes people who will tell you the truth about the dangers of shock.

There is also a five-day period to consider whether to give consent. It’s not clear to me what is supposed to happen when the five days are up, since shock cannot be done to a person who is competent without consent. But it does seem to take pressure off to give an immediate response.

9083:
Requires reporting of demographic information such as age, sex, race, diagnosis; source of payment, type of electroshock device used; and certain injuries or damage to health associated with electroshock, including autopsy findings if death occurs within 14 days after electroshock, or if death occurs as a result of certain health problems occurring within 14 days after electroshock.

There are problems with this; no reporting of long-term memory loss, only memory loss immediately after electroshock; and the reporting of deaths will likely be underestimated in the case of outpatient shock if no follow-up is required to ascertain condition.

Also, the senate bill just introduced as counterpart legislation (s-7371) leaves out requirement to report demographic information of age, sex & race. on this, i think it’s important to support assembly version to know how shock is being used (on whom) & especially whether it’s being used disproportionately. would have been better to have a breakdown for demographic categories for forced shock also & information to indicate whether non-court coercion was used such as threat of transfer.

9084:
Requires that facilities that do shock should be “readily accessible” to emergency medical resources – problem is that readily accessible is not defined. How far away? Is a state hospital which doesn’t have on-site emergency medical resources in compliance? I have heard this is supposed to be addressing shock in doctor’s offices – not sure how they will delineate.

I want to say something about the process of working on this too. It has been hard to say the least for advocates to get a fair hearing with the decision-makers. Linda Andre particularly has been disrespected and perhaps deliberately misunderstood as to her actual positions. she, and CTIP in general, have been careful to not take the position that shock should be entirely banned – they say it is a procedure that is inherently dangerous & people who are considering it have the right to know the extent of the danger. when several of us went to a meeting with Marty Luster and legislative staff, it was uncomfortably like pulling teeth; Luster was courteous and gave us some of what we wanted – but one of the legislative staff continually tried to filibuster and derail us by lecturing us on the political process. and one single, one-hour meeting was not by far enough to get at all the issues. yet, as far as i know, we were the only independent, grass roots activists who met with Luster on this issue (at this stage of the process at least). his staff is in daily contact with NYAPRS, an organization which primarily represents providers but is wrongly accepted in Albany as speaking for people subjected to psychiatry as well. they have also been somewhat respectful and receptive to lawyers who did not present themselves as grass roots activists. the lawyers made some very important contributions, but this does not substitute for fully hearing out the people whose interests you say you are protecting.

Finally, you will probably be interested to know that there is grass roots mobilization to tell people not to support 9082 but to support the other bills (conceivably also to raise questions & concerns about things you don’t like or would wish made stronger – but be aware that sometimes this can backfire, since they are at the point of wanting to get something passed & might make things worse if pushed to change anything.)

Hope this is interesting &/or informative to you, just occurred to me that while we are in the midst of it here it would be worthwhile to get the word out & hope that it will help other people or just get support & understanding for what is really going on.

A TASK FORCE REPORT OF THE AMERICAN PSYCHIATRIC ASSOCIATION 2001

THE PRACTICE OF ELECTROCONVULSIVE THERAPY
RECOMMENDATIONS FOR TREATMENT, TRAINING, AND PRIVILEGING
SECOND EDITION

A TASK FORCE REPORT OF THE AMERICAN PSYCHIATRIC ASSOCIATION 2001

SUMMARY

* ECT should not be reserved for use only as a “last resort”

* Some medical conditions substantially increase the risk of ECT treatment

* Elderly patients maybe at greater risk for more persistent confusion and greater memory deficits during and after ECT

* Few studies address the use of ECT in children and adolescents

* To some extent, medical adverse events can be anticipated

* ECT facilities should be appropriately equipped and staffed with personnel to manage potential clinical emergencies

* Each facility should have a minimal set of procedures that are to be undertaken in all cases

* It is incumbent on facilities using ECT to implement and monitor compliance with reasonable and appropriate policies and procedures

* The patient should provide informed consent unless he or she lacks capacity

* There is no clear consensus about what constitutes the capacity to consent

* There may be concern that the attending physician is biased toward finding that capacity to consent exists when the patient’s decision agrees with his or her own

* Continued use of certain ECT devices is not justified, including sine wave, constant voltage and constant energy devices

* Patients should be monitored during ECT

* Continued therapy has become the rule in contemporary practice … the risk of relapse after ECT is very high…the need for aggressive continuation therapy … is compelling and it should be instituted as soon as possible

* After ECT, concern over recurrence of illness is so great- -that maintenance therapy should be initiated in virtually all patients receiving continuation therapy

* The absence of controlled studies of the efficacy or safety of long-term maintenance ECT

* The patient’s medical record is a legal document … the clinical record should contain a summary of major consent related discussions

* The practice of ECT is a highly technical and sophisticated medical procedure

* ECT training in residency programs in the U.S. ranges from excellent to totally absent. In many cases, the training is no more than minimal

* No national accrediting body presently provides assurance of clinical competency in ECT

* It is clear that general privileging in psychiatry will riot suffice and that specific privileges to administer ECT should be required

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