Report from CMHS Meeting on ECT|
Held January 17, 1997
Wyndham Bristol Hotel, Washington, D.C.
For many years, ECT survivors, doctors, researchers and advocates have tried to call attention to the many issues surrounding ECT. And for that same amount of time groups that oppose any regulation of ECT, such as the American Psychiatric Association and National Alliance for the Mentally Ill, have resorted to name calling and other tactics in an effort to deflect attention from the real issues. (Letters obtained under the Freedom of Information Act that protest CMHS's efforts)
But now, the United States government is listening. In fact, they have done more than listen, they've encouraged open communication and a thorough investigation into the complaints of the thousands of ECT patients across the country.
The Center for Mental Health Services, part of the US Department of Health and Human Services, has been conducting a review of electroconvulsive therapy. Despite efforts from NAMI and other groups, CMHS is including ECT survivor issues in the study. This study is not yet finished, but CMHS has said it will include the results of a recent meeting in Washington, DC in that report.
A group of consumer/survivors met with officials from CMHS on January 17, and spent the day discussing the issues surrounding ECT. Our voices represented a variety of viewpoints, but we were able to reach a consensus on three key points.
1. The research into the after effects of ECT, and how ECT recipients feel about their treatment, is lacking substantially. And the little research that does exist is full of bias from the perspective of ECT doctors, who often fail to acknowledge problems exist. Our task force agreed that more research is needed in the areas of patient attitudes and effects of ECT on the brain.
2. CMHS and the newly-formed Coalition of ECT Recipients will co-propose a study to investigate patient attitudes, to be funded by CMHS/NIMH. This study will be led by the Coalition, although methodologists from outside the field of mental health will be brought in to assure the study is unbiased.
3. The results of this meeting should have a prominent place in the CMHS review.
As this exciting project develops, I will give updates here.
Other areas of concern and discussion:
FDA negligence in the regulation of ECT devices. Researcher Doug Cameron explained why the device currently in use does not fall under the FDA guidelines. He illustrated why this is NOT the procedure that was grandfathered in under the current Act. Although the APA and shock industry says that today's ECT is gentler, Cameron has shown through intensive research that today's machines actually deliver more electricity, not less. We agreed that the FDA should investigate this.
Fraud and deception. Cameron is in the process of showing that the memory studies are based on fraud. I will be adding more information about this as it becomes available, but it basically breaks down to the researchers using a smaller amount of electricity than the amount used in clinical practice. (The difference between threshold and supra threshold; more on this later.)
Pre and post testing. Most of us agreed that extensive testing of all ECT patients should be mandated by law. This would include proper memory testing, and MRIs, all before and after the series.
Informed consent. Participants felt that patients are being given improper consent, relying on materials that the industry uses as public relations, rather than true, solid information. What would constitute real informed consent? The Washington Post printed an article September 24, 1996, noting that the "model consent form drafted by the APA and copied by hospitals says that 'perhaps 1 in 200' patients report lasting memory problems....Harold A. Sackeim...member of the APA's 6 member shock therapy task force says that the 1 in 200 number is not derived from any scientific studies. It is, Sackeim said, 'an impressionistic number' provided by...ECT advocate Max Fink in 1979. The figure will likely be deleted from future APA reports, Sackeim said."
Mandatory reporting laws: A federal law should be enacted that would require each state's mental health department to maintain statistics on ECT treatments, similar to the California law.
Involuntary ECT. With two dissenting, the rest of us agreed that ECT should never be given against a person's will. If they say no to ECT, that should be the patient's choice. Since Medicaid and Medicare both allow payment for ECT, this has escalated its use and escalated the use of forced shock, especially on older women. The government paying for forced ECT is another concern.
Conflict of interest in the industry. The top "experts" on ECT have financial interests via owning the machinery companies, as well as companies that make accessories (mouth guards, videos, etc.). This has led to a very imbalanced effort in the area of public information and research.
Use of ECT on children. This involves the issue of involuntary ECT, since children cannot legally consent. There are *still* reports of parents having their kids shocked to try and get them to "give up" their homosexuality, even though the psychiatric industry no longer lists homosexuality as a mental illness in its DSM. The use of ECT on children was outlawed in Texas, but ECT enthusiasts suggested that in order to get around this, doctors send the children to nearby Louisiana by ambulance.