Electroconvulsive Therapy Background Paper - Electroconvulsive Therapy

Written by RESEARCH-ABLE, INC.

"The Support Coalition was founded in 1990 ... Forced ECT may involve less than five percent of all cases, but it is the litmus test to see if the Federal government is responsive to consumer empowerment. No consumer/survivor organization endorses forced ECT."

"Our members tend to be folks with negative experiences. They have experienced devastating, poignant, persistent memory loss ... Many members have personally experienced great problems ... Our members have lost memories of weddings, the birth of children, the ability to play musical instruments, they can't remember videos, vacations."

"I have met some individuals who feel they have benefited from the treatment They may experience a temporary lift for a four-week period. This is not really recovery."

"Forced ECT is the key issue. There have been more comments on this than on any other issue. It destroys trust and safety; it's a violation, a profound violation to the core of one's being. We are disappointed that CMHS (Center for Mental Health Services) has been slow to acknowledge and deal with this concern ... Another important issue is fraudulent informed consent. There is much more of this than the American Psychiatric Association (APA) claims. Deaths also are much more frequent than the APA states."

"Consumers and their families need to know the full range of hazards. People aren't told memory problems can last as long as three years ... Consumers should have a legal advocate present when they make decisions about treatment . . .They must have education on other alternatives and the right to refuse."

National Association for Rights and Advocacy (NARPA) (Bill Johnson)

NARPA is a non-profit organization composed of mental disability program administrators, paralegals, professionals, lay advocates, and ECT survivors.

"We are opposed to involuntary treatment on moral and ethical grounds and are the only professional organization that takes this position ... We oppose the resurgence of involuntary administration ... The psychiatric profession usually minimizes the risks and overstates the successes of ECT."

"If ECT is done against the will (of the patient), it is totally immoral. The procedure is a lot safer than it was, but nevertheless it remains violently intrusive."

Respondent stated that NARPA has a large number of anti-shock activists among its members and most would seriously question the efficacy of shock treatments. He considers the following issues important: 1) An independent study of ECT, of its effectiveness and failures; 2) Ensuring consumers are fully informed about its pros and cons when they make treatment choices; and 3) Obtaining information about the profits hospitals and physicians make from ECT.

National Depressive and Manic-Depressive Association (NDMDA) (Donna DePaul- Kelly)

NDMDA consists of persons who have experienced depressive [unipolar] or manic- depressive [bipolar] illness and their families and friends. Excerpts from a NDMDA statement on ECT follow:

"Electroconvulsive therapy is a safe and effective treatment for certain patients with serious psychiatric illness. NDMDA strongly supports an individual's right to receive any safe and effective treatment for psychiatric illnesses, including electroconvulsive therapy, and therefore strongly opposes any laws or regulations which interfere with patients' access to competently administered electroconvulsive therapy (ECT)."

"Access to ECT, as well as all medical care, must be subject to complete, continuing informed consent. Consent must be obtained through a sincere effort, free from explicit or implicit coercion by the physician or the facility. The patient's right to withdraw his/her consent at any time during the course of treatment must be protected. If the patient is incapable of consenting to treatment, the appropriate local legal procedures must be invoked."

Respondent reported that she had heard from a lot of consumers that ECT works when other treatments do not and:

"ECT can get you to a place where other treatments will then begin to work. Consumers have told me that the memory lost from ECT isn't nearly as much as the memory lost when they were severely depressed -- sometimes they've lost weeks of their memory [to depression]. Most of the people we hear from have had a good experience with ECT."

Respondent identified informed consent and overcoming the negative reputation of ECT as the two key issues.

National Association of Protection and Advocacy Systems (NAPAS) (Curt Decker)

NAPAS is an organization that has members in every State and territory that have Federal authority and resources to represent and investigate abuse and neglect in relation to mental illness.

NAPAS does not have a formal position on the use of ECT. However, the organization is leery about the administration of ECT and supports:

"... full and informed consent. We are very concerned about involuntary administration and believe it is a violation of persons' rights. We are not medical people. We have heard from consumers that claim memory loss and we have worked with groups of consumers who have tried to ban ECT. But we have no position on this ... I have heard from people who have had ECT and experienced severe memory loss. They are very angry and bitter. From the larger perspective, it plays into the issue of forced treatment ... ECT is really a flash point for many consumers ... One of the key issues is moving away from involuntary and forced treatment. Consumers need to be able to look at various treatment options so they can be more comfortable about ECT... There should be an opportunity to choose an 'advance directive' which is an agreement that a person makes in advance when they are more lucid and stable. This would make it easier for families and care givers because the consumer is actually making the decision that they okay certain treatments, in advance of when they are in an episode where they no longer can make a decision."