Human Rights Reporting

Spring 2001 Student Work

Paul Henri Thomas fled Haiti, where he organized student protests against the Duvalier regime. But now that he’s here in New York, he’s once again organizing -- this time to end his involuntarily hospitalization at Pilgrim State Psychiatric Center, where he is undergoing forced electro-convulsive therapy (ECT). Thomas said he would like to stop what he considers torture.

By Stacey Young

Paul Henri Thomas didn’t waste time on the beaches of his native Haiti. Instead, he soaked up grimy Port-au-Prince boulevards and the whisperings of political unrest, where he organized student protests against the Duvalier regime. But when his friends began disappearing into the yawning mouths of torture chambers, Mr.Thomas slipped onto a rickety plane bound for New York---and finally, freedom.

Only here he’s once again organizing, this time to end his involuntarily hospitalization at Pilgrim State Psychiatric Center where he is undergoing forced electro-convulsive therapy (ECT). Forget the degree in computer science he started more than three years ago, Mr. Thomas, 49, said he would merely like to stop what he considers torture.

“It is a terror for me,” he said, speaking through a heavy French Creole accent as he describes the 50 plus involuntary procedures he has undergone. “There is always the hope that I will find an end to that, somehow to get out of the thing.”

For Mr. Thomas--once considered so sick his sister said she found him playing with his own feces---ECT has become too harsh, its side effects too hard to bear, and its course of treatment seemingly unending.

Unlike the many psychiatric patients who willingly choose ECT to combat mental health problems, every year there are a very small percentage of Americans like Mr. Thomas who are forced to undergo the procedure. The American Psychiatric Association (APA) reports roughly one in a thousand of the estimated “100,000 to 200,000” people who underwent ECT last year did so without consenting. This figure does not include the thousands more who receive drug therapy against their will.

As he talks, Mr. Thomas’ elegant fingers drum the sides of his hospital chair. He cocks his head from side to side, trying to recall how he wound up where he did. Of one thing he is certain: Deciding his own medical fate is a basic human right he has been unfairly denied.

“It’s not my first time in the mental health system or an institution, but it’s the first time I haven’t had full collaboration,” he said. “The first time I had ECT it wasn’t pleasant, but it wasn’t a scary. It was a mutually agreed upon decision. I could tell the doctor my feelings and if I wanted him to stop, I think he would’ve done so.”

Now he tells his doctors to stop and is met with burly orderlies.

When All Else Fails

Never before has psychopharmacology been quite as inventive as it is now. New varieties of drug cocktails offer physicians almost infinite combinations to help combat mental illness. But problems with toxicity can lead to organ damage in a small number of those with chronic mental health problems. When drugs fail or the side effects of treatment outweigh the benefits, many doctors turn to electroshock.

Mr. Thomas’ treatments began when his liver could no longer tolerate the more than 1,000 milligrams of Lithium and Depakote (mood stabilizers) prescribed for him. His physicians chose ECT as their next line of attack.

A typical ECT procedure begins by administering general anesthesia and muscle relaxants to the patient. These paralyze the body to reduce the severity of convulsion. Electrodes are then placed on either one side (unilateral) or both sides (bilateral) of the scalp and enough electrical current is passed through the brain to produce a grand mal seizure, similar to an epileptic fit. No one is really sure how ECT helps pull patients out of deep depression and psychosis, but doctors say it does.

“ECT is the most effective anti-depressant, anti-psychotic, anti-catatonic we have today,” said Dr. Max Fink, who helped pioneer the procedure in America during the 1950s and authored a number of books on the subject. He says ECT has gotten an unfair rap by the media. And books like One Flew Over the Cuckoo’s Nest, the story of patients living in an insane asylum undergoing forced treatment, haven’t done much to reverse the negativity that has dogged the procedure.

In its infancy, ECT was harsh on patient’s bodies. Backs were often broken, or tongues were bitten off after and during ECT induced convulsions. But great strides have been made in the treatment, experts say. Today it is endorsed by the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). A number of advocacy groups also support it, including the National Alliance for the Mentally Ill and the National Depressive and Manic Depressive Association.

But lack of solid data on ECT and drugs and the clandestine nature of Mental Hygiene Courts, where forced treatment is decided, pose a looming problem for institutionalized patients battling for inclusion in their treatment, said David Oaks, the director of Support Coalition International, a psychiatric patients’ rights group.

He believes that as ECT gains in popularity and legislation aimed at curbing patients’ rights continues to make it onto the books, patients who are forced into treatment will more likely than ever be led to electroshock.

And it is a treatment with side effects like permanent memory loss that rival toxicity.

“I forget names, phone numbers, a whole series of things,” said Mr. Thomas.

He sometimes confuses Creole and English when he’s speaking, something he says never used to happen to him before.

Holding Court

The plight of patients like Mr. Thomas are worst case scenarios for doctors, lawyers and advocates, nightmarish examples of what can happen when patients find themselves on a collision course with two of the nation’s most complicated institutions, the mental health care and legal systems.

When the court’s orders are expressly against the wishes of the patient or the patient’s family, questions of human rights come so sharply into focus the state was forced to create special Mental Hygiene Courts to hear these cases. They’ve been public since 1997 but some say the courts closed their minds long before they opened their doors.

“The major problem is that long before there were medication and commitment hearings, the court system was already cynical and skeptical of patients’ rights,” said Bill Brooks, who directs the pro bono Mental Health Project at Touro Law School.

One way critics say the courts prevent openness is by hearing patient competency cases on hospital grounds, where arguments are generally played out before a mix of doctors, judges and lawyers. Occasionally family members attend, but rarely the public.

While some attorneys say this privacy is essential, advocates who monitor the courts say this reasoning has been used before to prop up a system that leaves individuals who are already in a frail state of mind floundering in confusing legalese.

“This is one of the most controversial aspects of the law,” Mr. Oaks said. “You’re dealing with the very richest most powerful professions dealing with the very weakest, most powerless population. I’d like to know who is watching how decisions are made.”

But those who defend the mentally ill sometimes defend the court’s discretion.

“Many times, as a result of a patient’s illness, they [the patient] might not have a full understanding of what public access might mean to them,” said Sidney Hirschfeld, Suffolk County Director of Mental Hygiene Legal Services (MHLS), the government-funded organization that often represents the mentally ill in court. “Then, when they get well, they turn around to their attorney and say, ‘How could you let them hear that?’”

Weeks before his March 2 trial, Mr. Thomas requested an open hearing. That day, more than 25 mental health advocates came to watch but Pilgrim police officers allowed only five of them to sit in on the proceedings. The rest waited outside in the snow.

Others say that open or closed, the courts cannot decide cases indiscriminately. They say there are carefully built-in protections in the law which are generally enough to protect patients from systemic abuse.

“What happens in ECT cases under New York law is that they can only proceed if the court finds two things: one, that the patient is not competent to make rational decisions,” said John Gresham, a senior litigation attorney with New York Lawyers for the Public Interest. “If that is established, then the hospital has to prove whether doing shock is better than not doing shock. There’s a fairly extensive set of legal rights for patients and the standard of proof on the hospitals is high.”

Almost everyone involved in competency cases acknowledge one thing: Human rights questions remains prevalent in their minds as the trials proceed.

“What’s lost to the patient is their fundamental right to determine their own fate and what happens to their own body,” said Mr. Gresham. “That’s why they come before judges, trained experts.”

Fighting the State

Even with the burden of proof resting on the state, those who have been exposed to the system firsthand say they sometimes feel powerless before it.

Anna Szysko, whose 20-year-old brother, Adam, has been at Pilgrim State since November 2000 and is also receiving forced treatment at Pilgrim State, said she is dissatisfied with the way his court hearing went.

“It was a closed court on the grounds of Pilgrim State,” Ms. Szyszko said. “Instead of fighting for his rights, the lawyer was telling us shock was a good thing to do.”

Some are not surprised. “However you want to slice the pie, patients are coerced by everyone along the way, doctors, the legal system, everyone,” Mr. Brooks said.

The last time Ms. Szysko saw her brother he was staring at a picture of a tropical island in the visiting room of the hospital. “He told me that he wants to go there,” Ms. Szyszko said. “He’s obviously thinking, ‘I’d like to do this and my life is wasting away in here.’ And I think he’s actually getting worse.” The Szyszkos tried to get Adam’s medical records so they could send them to an independent psychiatrist for evaluation but received a letter from the hospital informing them that, by law, their request was being denied to protect Adam’s right to privacy.

“It’s always a double edged sword in the psychiatric context,” said Mr. Gresham. “All these things represent real collisions. And they’re not simple. They’re complex.”

The Szysko’s immigrated from Poland 12 years ago and say they never expected psychiatric treatment to be like this in America. “It’s very scary,” Ms. Szyszko said. “To know that you can be in a place like that and have absolutely no other options than to accept the treatment they choose for you and to know that you’re not entitled to an opinion from someone outside the system.”

The hospital declined to comment on Mr. Thomas’ and Mr. Szyszko’s cases but said that, in general, they leave treatment decisions to attending physicians and when need be to the courts.

“The law [Rivers versus Katz] gives clinicians the right to give treatment over objection,” said Sarah Kalvin, a spokeswoman for Pilgrim State.

The Numbers Game

Agencies that monitor psychiatric treatment are bungling the job, mental health advocates say. They want the government to acknowledge what is really going on: ECT is so underreported and research on it so divisive that any figures they come up with are guesses.

“People aren’t keeping track,” said Mr. Oaks. “It’s all covered up.”

Because ECT often leads to permanent memory loss, and sometimes even death, in patients who receive it, advocates like Mr. Oaks are waging a state-by-state battle to pass mandatory ECT reporting laws they hope will unmask the statistical mysteries of a treatment the public is still uncomfortable with.

So far, the most concrete information on ECT today is gleaned from only four states with mandatory ECT reporting laws---Texas, California, Massachusetts, and Colorado. They require psychiatrists to submit reports detailing basic information on patients who get electroshock. In the four states, patients’ names are omitted from documentation but information such as age, gender, race, number of treatments given, and complications and excessive treatment are tracked by local Departments of Mental Health.

The New York State Office of Mental Health (OMH) has no tracking system in place. “We don’t keep records on ECT,” said Jill Daniels, a spokesperson for OMH. “And we probably won’t until we’re required to.”

The OMH only records cases relating to Kendra’s Law, an outpatient commitment law passed in 1999 after a schizophrenic man pushed a young Manhattan woman, Kendra Webdale, in front of an oncoming subway. The law forces the “violently mentally ill” into treatment.

Ms. Daniels said her agency keeps numbers on people who fall under the law’s jurisdiction, but does not track the treatment they get. Given that, New Yorkers interested in finding out more about how ECT is administered must rely on data collected from one of the four states that do track it.

Their reports have yielded some information that directly contradicts the estimates of some government agencies and organizations like the American Psychiatric Association (APA). Most glaringly, the APA estimates that only 1 in 200 patients who undergo ECT experience memory loss. California figures show that number is as much as 40 times higher. Of roughly 12,000 patients given ECT between 1989-1994, a total of 96% experienced memory loss lasting longer than three months after final treatment.

And though the APA estimates only 1% of all ECT patients receive treatment against their will, California state records show that 445 patients out of 12,000 were involuntarily committed, while 3% of the general psychiatric hospital population received ECT without consenting to it, making the total number of those who are involuntarily treated with ECT close to 7%.

Mr. Oaks says ECT needs to be tracked to better understand its effects not only from a medical point of view but from a patient-centered one. He believes most doctors falsely convince people that the procedure is safer than it is.

“They reassure people that memory loss times are about as long as treatment themselves,” he said. “They don’t come clean on consistent memory loss. Some people walk away with minor problems but it’s Russian roulette. There are people who’ve had a piece of them wiped out.”

A New Jersey-based anesthesiologist who asked not to be named sees even more disturbing trends in electroshock. “ECT is about making more money. Doctors have patient after patient lined up every morning.” She believes that health management organizations are more willing to reimburse faster and shorter-term treatments like ECT at higher rates than standard treatments such as talk therapy and anti-depressants, which do not work for 30% of the chronically depressed and are more expensive because they are longer-term.

“I don’t like doing the procedure,” she said. “It’s as bad as it was when it first came out, only now we [temporarily] paralyze the patient so they don’t convulse and it looks better.”

Money, it turns out, does seem to factor into treatment.

Nearly 50% of patients given electroshock in California were over 65 years old, qualifying them for Medicare. And, according to an article previously published in USA Today, 65-year-olds in Texas receive ECT 360% more than 64-year-olds because Medicare picks up the tab.

In 1990, the U.S. Food and Drug Administration (FDA) announced that ECT could cause brain damage and permanent memory loss. And in 1999, the APA said its guess that only a “very small” percentage of ECT patients experience memory loss is wrong. They now say “many” do.

Given these contradictory findings, advocates are pushing hard for laws to track electroshock. Most recently, Vermont passed legislation in January 2000 to establish a committee to recommend ways to deal with patients who lack capacity to decide on electro-convulsive therapy.

The legislation fell far short of activists’ efforts. They had been lobbying for a bill with reporting requirements but were defeated. But some remain hopeful that a bill before the Missouri House of Representatives on mandatory ECT reporting will pass.

Mr. Oaks, when discouraged, points to success stories from across the Atlantic. In one instance, a Northern Italian local government---Italy has the distinction of pioneering ECT, inventing the procedure in 1938---has banned electroshock on children, the elderly and pregnant women.

He remains confident reporting will lead to the examination of other treatment options.

“There are all kinds of innovative approaches to treating depression on the horizon,” he said. “There’s massage therapy, pet therapy, so many things that the psychiatric profession doesn’t expose their patients to. It’s drug, drug, drug or shock, shock, shock.”

Arriving at the precise number of patients who find themselves on the same slippery slope as Mr. Thomas and Mr. Szysko is a virtual impossibility.

The state keeps no records on involuntary psychiatric care.

“The main treatment the New York State Office of Mental Health responds to is the silent treatment,” Mr. Oaks said. “They claim to have openness about mental health, but how can you have openness when you don’t keep track of numbers?”

Keeping good records, he says, has never been more important than now, as outpatient commitment therapy and assisted outpatient therapy laws gain in popularity.

In 1999, the New York State legislature passed Kendra’s Law, making it the 41st state in the country to pass involuntary outpatient commitment (IOC) legislation. The law is named after Kendra Webdale, who was pushed from a Manhattan subway platform to her death by Andrew Goldstein, a schizophrenic. It gives judges who formerly had jurisdiction only over the institutionalized the right to order IOC, which forces treatment on patients living outside institutions.

Since its passage, 658 patients across New York State were court-ordered, for the first time, to undergo treatment for their illnesses and 81 patients were given renewals of court-ordered treatment, according to figures released by the New York State Office of Mental Health (OMH). Patients who can be legally forced into treatment, they estimate, may reach as high as 7,000 cases a year.

But, OMH does not track the specific treatments patients are ordered to undergo. They do not track information on outpatient or inpatient commitment by age, race or ethnicity, making it difficult to answer basic questions like whether African-Americans, women or the elderly receive court-ordered treatment in disproportionate numbers, or at levels that may have something to do with income.

“We keep only the raw numbers,” said Jill Daniels, a spokeswoman for OMH. Those figures report the total number of patients falling under Kendra’s Law and are not broken down into categories.

The courts too, appear to be lax when it comes to tracking patients who come before its judges. Even organizations that are meant to advocate on behalf of the mentally ill seem to have dropped the ball on monitoring how many of them pass through the system each year.

“We don’t keep statistics on how many cases come before the courts or what their outcome is,” Mr. Hirschfeld said.

This apparent lack of accountability has some advocates and families of the mentally ill fuming. Without numbers that show how many are forced to undergo ECT---or other court ordered treatment---and how often, those fighting the system can feel even more isolated.

“They just want us to go along with treatment,” Ms. Szysko said. “They’re saying we’re not allowed to ask any questions.”

Some doctors who speak out against the system agree.

“Medicine is supposed to help its patients and that should be voluntary,” said Dr. Nathaniel Lehrman, former clinical director of Kingsboro Psychiatric Center. “Hospitalization against the will should be as brief as possible and treatment should be a collaborative effort between the doctor and patient.”

Dr. Lehrman has publicized his own brief bout with mental illness to show it is possible to heal from it with the proper medical care.

“It doesn’t work when doctors and patients are enemies,” he said. “Who wants an enemy trying to heal you?”

Getting Answers

The Szyszko family is preparing for Adam’s appeal.

And these days, Mr. Thomas prepares for his second try. He travels the halls of Pilgrim State with a blue vinyl airline bag tucked closely under his arm. In it, he stuffs oranges and personal papers. He writes everything down because he said he is afraid he won’t remember important facts about his life.

In late April Mr. Thomas lost his first appeal. New York Supreme Court Justice W. Bromley Hall ordered him to undergo a series of 40 more shocks, making the total number of treatments he will receive close to 100.

In a poem he penned on freedom, Mr. Thomas wrote, “I am hungry for the ‘Main Street.’ I am thirsty for the ‘Wind at free space.’ I am in a hurry to hear flap a flag under the violence of a brief hurricane!”

The question now remains how long his wait will be.

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