Minn. patient wants right to refuse electroshocks

[Jim Moore]

http://www.am1500.com/categoryfolders/Stories/S924315.shtml

Minn. patient wants right to refuse electroshocks

Ray Sandford doesn’t like electroshock treatments.

After more than 40 of them, he finds it hard to remember names and other things. His bipolar disorder is under control, he says, and he should have the right to say no.

But at age 55, after being in and out of mental hospitals for nearly four decades and being declared legally incompetent, Sandford has no choice. His caregivers persuaded a judge after he hit a low point last year that he had no alternative but electroconvulsive therapy (ECT) plus a combination of anti-psychotic drugs.

"I just don’t like the idea of them being able to force these treatments," Sandford said.

Now a group in the "Mad Pride" movement that advocates for the mentally ill has taken up Sandford’s cause, arguing that nobody but him should dictate how he’s treated.

David Oaks, executive director of MindFreedom International, led about 24 people in a rally at the Minnesota Capitol in early May to draw attention to Sandford’s case. The Eugene, Ore.-based group opposes involuntary psychiatric treatment and all use of ECT, and Oaks calls Sandford a victim of torture.

"This is worse than waterboarding," Oaks said. "Offer somebody the choice between waterboarding or forced electroshock and a lot of our people who know what it is will say waterboarding."

But defenders say ECT is safe and effective in many severely depressed patients for whom drugs have failed.

"It’s not torture," said Dr. William McDonald, a psychiatry professor at Emory University who chairs an American Psychiatric Association committee on ECT. "That’s a completely unfair characterization. It’s inflammatory."

Sandford’s legal guardian, Lutheran Social Service of Minnesota, mostly declined to talk about his case because of privacy rules. Eric Jonsgaard, senior director of its guardianship program, said ECT was the court’s decision, not the agency’s.

"We would love to be able to say here’s what’s going on in this case, but we have to look out for his best interest," Jonsgaard said. "Frankly, here’s a man with capacity issues who doesn’t understand all that this is doing to his life."

Experts aren’t sure why ECT works. It triggers a seizure, and one theory is that it somehow "resets" the brain.

McDonald said ECT patients typically are put under general anesthesia for about 10 minutes and given muscle relaxants to prevent spasms. He said they get just enough electricity to cause a seizure. When patients wake, they have little or no memory of being shocked. Some patients have side effects such as temporary memory loss, headaches and nausea, but they are manageable and there is no brain damage, McDonald said.

ECT is given to selected people suffering severe depression including bipolar disorder, not generally for other mental illnesses. McDonald said it can be 80 to 90 percent effective in causing at least a temporary remission in a patient’s disorder. Most of the thousands of patients who undergo the treatment every year do so voluntarily, he said.

Sandford did, too _ at first.

Sounding lucid and alert in a phone interview, he said he "agreed very nicely" to the treatments at first, even though he found them frightening. He thought he would get only three, he said.

"It just went way beyond that," he said.

His mother, Marilyn Sandford, said she also supported a few treatments for her son. A retired nurse from Edina, she was familiar with ECT because she actually helped administer it during her career and had seen its benefits. But she said the more than 40 he has received is unjustified.

A court order authorizing ECT for Sandford said he has been admitted more than 30 times to the Anoka-Metro Regional Treatment Center over the years. When he arrived at the psychiatric hospital in January 2008, the order says, he was "grossly psychotic, yelling violently, smearing feces all over, urinating whenever and wherever he felt like it."

While at the hospital that time, the order said, Sandford "required seclusion and restraints on many occasions. His behavior was unpredictable and uncooperative. He was violent, striking out at staff and other patients, and he exhibited delusional and grandiose behavior."

Two court-appointed examiners _ a psychiatrist and a psychologist _ reported to the court last summer that Sandford had improved significantly as a result of the subsequent ECT and drug therapy, but they agreed he remained a danger to himself and needed continued ECT. He failed to persuade a judge last December to stop the treatments.

Sandford now lives in a small assisted-living home in Columbia Heights, and undergoes ECT once every 30 days.

"They can actually tie me up, take me by ambulance to the place and give me the shock treatments if they wanted to do that," he said.

Pamela Stuntz, a psychology professor at Texas Christian University who hasn’t been involved in the case, said the fact that Sandford was moved into a less restrictive setting suggests that "the people who’ve been treating him have been doing a very good job."

Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said unwanted invasive procedures can be justified if they’re in the patient’s best interest, are something they’d want if they were competent, and if nothing less intrusive would work.

"The real issue for the family, the guardian and the court is, ’Is it working?’ And if it is working, how do we get him the minimal amount that keeps him functioning. And I would say that about any treatment," Caplan said.

Oaks said Sandford acknowledges he needs help, but he considers Sandford competent enough to refuse ECT. He noted that Sandford was functioning well enough to use the Internet to find his group and ask for help.

"He’s been consistent and focused and clear and reasonable about why he doesn’t want shock. ... No should mean no for extreme, controversial, potentially irreversible, intrusive procedures," Oaks said.

The "Mad Pride" movement includes groups and individuals that seek not only an end to forced treatment, but to redefine their conditions as something to be respected instead of diseases to be suppressed.

Most members of MindFreedom International are "psychiatric survivors" who’ve been abused by the mental health establishment, said Al Galves, a MindFreedom board member and psychologist from Las Cruces, N.M.

Caplan, the ethicist, said it’s good that groups like MindFreedom are trying to reduce the stigma faced by people with mental illnesses. But he said it’s wrong to lump all mental health challenges together.

"The mental health area is a big tent, but some of the people in the tent really do have severe problems and I’m not sure one-size-fits-all is the right answer," Caplan said.

(Copyright 2009 by The Associated Press. All Rights Reserved.)