Dec 15, 2008 01:00 AM

The full article, including the audio and slide show, is available on the Minnesota Public Radio web site here:

http://minnesota.publicradio.org/display/web/2008/12/15/forced_electroconvulsive_therapy

December 15, 2008

St. Paul, Minn. — Ray Sandford has been getting electro-convulsive treatment, also known as electroshock and ECT, since the end of May. For Ray, the process works like this. Every week or two he is taken to a hospital, where a medical technician attaches electrodes to his head and delivers electrical current into his brain. The current causes a seizure.

For reasons that doctors still don’t quite understand, some patients with severe depression or mania get better after having ECT.

But the potential benefits don’t matter to Ray. He says he dreads the shocks and wants them to stop.

“It’s scary as hell,” he said.

Ray is 54 years old, with a receding hairline and a salt-and-pepper beard. He walks with a cane and his hands shake slightly, a side effect from some of the medication he’s taking, he says.

We’ve met up in the basement of the small group home where he lives, so we can talk without disturbing his roommates. I’m warned by his legal guardians who are present for the interview that Ray gets tired easily, so this conversation may not last long.

I ask him what bothers him about getting ECT. Besides being scary, he says the electroshock makes his head hurt for at least a day, and it’s wrecking his memory.

“One of the things I have problems with is certain people,” Sandford said. “I can’t remember their names anymore. And I should be able to remember their names, since I’ve known some of them a long time. I can’t quite remember their names. And don’t ask me to tell you their names ’cause I won’t remember.”

Sandford’s doctors aren’t allowed to discuss his case with Minnesota Public Radio News. The courts have determined that Ray isn’t competent to make decisions regarding his own welfare, according to his guardian, Lutheran Social Services. As a result, he can’t give his doctors permission to discuss his private medical record.

But in public court documents, his psychiatrists state they sought ECT only after all other treatments, including psychotropic drugs, failed. They wanted to pull Ray out of a particularly lengthy psychotic episode that began a year ago.

His court record describes a man who was out of control for many months, urinating wherever and whenever he felt like it, smearing feces on hospital walls and even eating it.

Ray didn’t want to talk about his hospitalization. But his 80-year-old mother Marilyn was willing to fill in a few of the details.

“Voluntary treatment is always preferable to forced treatment. The more intrusive the treatment, the higher the bar needs to be for imposing.”
– Pamela Hoopes, Minnesota Disability Law Center

Sitting on a cream-colored chair in her tiny retirement community apartment, Marilyn Sandford clutched a picture frame showing Ray in happier times.

“I put in their baby picture and then their high school graduation picture. He didn’t graduate, but I’ve always liked that picture of him. He was a much beloved child,” said Marilyn Sandford.

Her son had a very happy childhood, Marilyn says. But by the time he turned 17, he began acting out in disturbing ways.

“One of the things I remember him doing was getting this car and driving it. We lived on a hill where there was pasture land. [He was] driving it round and round our house in the late night. Another time he got on my tail and just kept following me, no matter where I went, with the car,” she recalled.

“And then there were many very irritating things that had to do with body excrement and all kinds of things. And just his behavior was just out of control.”

Episodes like these re-occurred like clockwork every 18 months to two years throughout her son’s adult life, she said. The episodes lead to dozens of hospitalizations for a condition described in court records as schizo-affective disorder with bipolar tendencies.

When Marilyn Sandford heard this past summer that a court had ordered involuntary ECT for her son, she thought it seemed like a reasonable option. And after a few treatments, she was convinced that it had helped.

“What I told him is that it gave me my son back again. I hadn’t seen what I call the normal Raymond for a long time,” said Marilyn Sandford. “I was able to converse with him. We were able to have a normal conversation. It was wonderful and I thought, oh good, this is great.”

Marilyn assumed the ECT would stop after three or four sessions, especially since her son seemed to get better rather quickly. But after 12 sessions, the court authorized more treatments to be administered as often as every week for up to a year.

That seemed excessive, Marilyn said, given her son’s complaints that the ECT was causing memory loss.

“I don’t care if he forgets the birthday of his nieces and nephews — although it’s very important to him to remember that, and probably more important to him than it is to anybody else in the family. But I do care that he can remember the names and know that they’re born, and remember what he did last Christmas if it was a happy memory, remember the good times. It’s too bad to take away that,” said Marilyn Sandford.

She wasn’t sure what she could do about the situation, given her own health issues and her busy family life, including new twin grandchildren.

As the summer and fall wore on, Ray continued to get his weekly ECT treatment — all the while complaining to anyone who would listen. Then about a month ago, Ray ramped up his anti-ECT campaign.

“He’s a hero for me. He called up his local library and asked for help, and I love that,” said David Oaks, director of MindFreedom International, a coalition that advocates against forced medication and involuntary ECT therapy. “I guess they did an Internet search for mental health human rights and they found MindFreedom, and so we are coming through for him.”

“Those kind of things are just so intrusive, that no means no. If an individual says no, then no, they should not get those procedures,” Oaks said.

Most of the time, ECT is given to patients who want it. University of Minnesota psychiatry professor Carl Malmquist isn’t involved in Ray’s case, but he says it is now well accepted that ECT does help some people.

“If the drugs aren’t doing their job, so to speak, and the patient is responding and you’ve tried different drugs, you’ve tried different dosages, then you start to think in certain cases that maybe you need to use ECT. But it’s really used very sparingly compared to medication,” said Malmquist.

In cases like Ray Sandford’s, the treatment can be forced upon the patient, if doctors believe it’s the only way to make them well. There are no good numbers on how many people receive forced ECT in the U.S. It’s up to states to track these cases and most, like Minnesota, do not.

The advocacy group MindFreedom launched an Internet campaign on Ray’s behalf, calling on Gov. Pawlenty to investigate his case and put an immediate end to the ECT. The group also filed a claim with the United Nations, saying that Ray’s forced ECT treatments constitute torture.

The lobbying attracted the attention of the Minnesota Disability Law Center which is now reviewing the case. Legal director Pamela Hoopes says the group has just begun its investigation, so she can’t say much about the merits of the case. Any time someone’s right to self-determination is taken away, she says, the courts need to have a good reason.

“These are very difficult issues, and I think it would be hard to argue with the proposition that voluntary treatment is always preferable to forced treatment,” said Hoopes. “And the more intrusive the treatment, the higher the bar needs to be for imposing.”

Yet there’s not total agreement in the legal system on how to make a decision in someone’s best interest. Attorney Eric Janus is the president and dean of William Mitchell College of Law in St. Paul. He has studied the boundaries of the state’s ability to forcibly treat patients.

There are different perspectives on how the state should make these decisions, Janus says.

“Sometimes people say you should use the perspective of a reasonable person,” said Janus. “And it’s assumed that a reasonable person wants to protect him or herself against a relapse of a terrible mental illness.”

In Sandford’s case, his doctors haven’t said if they’re using the ECT to prevent a relapse or to continue his treatment.

Still the “reasonable person” test doesn’t make sense to everyone, including even himself, Janus says.

Janus says even greater weight should be given to what the patient wants — even if it appears their illness might be clouding their judgment. Competent or not, not everyone wants to be treated when they’re sick, he says.

“That’s really what the court should be asking,” said Janus. “What are this person’s values? What does he want? What kind of life does he want to live? And it should be trying to make the decision in his behalf.”

Ray Sandford agrees.

“A person should have a choice in their life what they’re doing.”

Ray Sandford is undergoing an exam by court-ordered psychiatrists today. Tomorrow, he will appear before a judge in St. Paul to see if his forced ECT can be stopped.