Psychiatric Patients Go On Strike
In Ken Kesey's classic 1962 novel, "One Flew Over the Cuckoo's Nest," Randle McMurphy leads an uprising in his ward against the despotic Nurse Ratched, raising the question: Who are the real voices of reason, the patients or their caretakers?
Patients at Greystone Park Psychiatric Hospital in Parsippany, N.J., are channeling McMurphy's spirit of rebellion, signing a petition in protest against what they see as draconian new rules, reports The Star-Ledger.
According to Ellen Lovejoy, a Greystone spokesperson, around 20 patients signed the complaint and boycotted one therapy session because of scheduling changes that took effect Aug. 1.
According to Christopher Badger, a high-functioning patient who has been at Greystone for 4½ years, the signees numbered 225, which is over half Greystone's population.
"There were 20 people in my unit alone," he said.
The boycott lasted a week, he added, and the complaints go far beyond the hospital's schedule.During the boycott, some patients were "written-up," a negative report that can be held against them in court hearings, and threatened with a loss of privileges, according to Eric, a patient at Greystone.
"It's America and high-functioning patients can't even have a peaceful protest," he said.
How Much Freedom For Patients?
The petition lists 17 grievances, but the catalyst was new restrictions on patient access to the Park Cafe, a watering hole where patients bought coffee or soda and hung out on weeknight evenings and weekends. Management cut back Park Cafe privileges to one hour and a half a week.
The space is being used for active treatment sessions instead of downtime, said Lovejoy. The hospital recently opened a Self-Help Center, where patients and former patients can socialize.
Badger called Lovejoy's reasoning "baloney." The venue, he says, isn't used for treatment. Badger believes that Park Cafe access was limited because some patients were using drugs and smoking cigarettes in the bathroom. Now the toilets are locked.
"They told us. They're trying to cut back on the cigarettes and gambling," said James Andrus, a high-functioning patient who claims he was only found not guilty by reason of insanity because of hallucinations he had in prison, as his body withdrew from the painkillers he'd been taking since a surgery on his spinal cord. His crime was manufacturing cocaine.
The cigarettes and gambling, he added, were "never going to stop," no matter how many patient privileges were curbed.
"A cigarette in America, God forbid," said Thomas Reed, another patient.
"Once you get a hospital with 300, 400, 500 patients, it becomes difficult to totally honor the choice of a patient," explained Phil Lubitz, director of advocacy for the National Alliance on Mental Illness of New Jersey. "To have one or two patients go to one area -- which is really the ideal, what we should be shooting for -- is a dilemma if the staff isn't there to escort them."
But that was one of the goals of Greystone's new facility, which four years ago replaced a sprawling 19th-century campus, formerly known as the New Jersey State Lunatic Asylum at Morristown.
"It was built with the expectation that patients would have more freedom to move around the hospital, without escorts," Joseph Young, executive director of Disability Rights New Jersey, told AOL Jobs. "But that's proven not to be true."
The hospital has made some progress, however, and reduced the use of restraint and seclusion. These techniques have a particularly tragic history at Greystone. In 2002, a mental health worker, attempting to physically restrain a patient in the "prone position," was kicked in the chest and died of sudden cardiac arrest less than half an hour later.
The Greystone of today has certainly distanced itself from a past tarnished by patient suicides and sex abuse scandals.
Despite these positive developments, the complaints raise serious concerns for some. "Where there's smoke," Lubitz said, "there's fire."
According to the petition, the hospital neglects low-functioning patients "on a daily basis," and the staff can be mean and disrespectful.
"Those are common complaints, everyday complaints," said Young. "Not to say they're not serious."
Neglect, he also mentioned, is a very broad term. In the past, long-term patients were dumped in "back wards," where neglect meant patients "weren't fed, clothed, and were left to lie in their own filth," Young said.
That isn't the case anymore.
Even still, Badger claimed that one of the low-functioning patients in his unit didn't have a shower for over a month.
According to Andrus, another patient was left lying in his own feces.
The petition further complained that nurses medicated agitated patients, instead of finding a "resolution to the problem."
This is a longstanding issue in state facilities, and Disability Rights New Jersey filed a complaint last year accusing the state's five psychiatric hospitals of forcibly medicating patients with "massive doses of mind-altering medication, sometimes administered by painful intramuscular injection, without any meaningful medical oversight and without due process of law."
"They become zombies, vegetables," said Kevin Hofmann, a patient at Greystone for three years.
The Right To Refuse Medication
Right now, New Jersey doctors are legally allowed to medicate involuntarily institutionalized patients without their consent, as long as they believe it is "essential to their recovery," according to Lovejoy, or that patients will "get better faster," according to Young.
This is unlike more than two thirds of U.S. states, where patients who refuse psychotropic drugging are provided with a hearing.
In New Jersey, if a patient objects to his or her drug regimen, the complaint is reviewed in a "three-step process," involving a psychiatrist, a treatment team, and finally the medical director. According to the lawsuit, the patients have no real right or power to appeal a forcible medication decision.
"Basically these institutions function on a medication model. There isn't a lot of talk therapy," explained Young. "The reason for that is ... that's the way these institutions have always functioned. It's inertia as much as anything else."
The reliance on chemical solutions makes sense for a psychiatric system that can thank Thorazine for alleviating the massive overcrowding in the 1970s and 1980s, which had filled Greystone's corridors at one point with makeshift cots.
The method works for some patients. But sufferers of dementia, personality disorders, head injuries and other conditions, Young explained, don't respond well to psychotropic drugs.
The "medication model" is related to another of the petition's protests: that patients receive only one 45-minute session of group therapy a week, and that the 20 hours of weekly programming do little to engage high-functioning patients.
"We do sing-alongs like kids in fourth grade, color pictures, paint pinwheels," said Paul Giosa, a patient at Greystone for six years, but a "product of the state" for 19. He started in juvenile group homes when he was 12.
"I'd like to see less Pictionary and more college degree programs," he said. "Things that will benefit us and the community."
"You don't get much more than a pill around here," said Badger, who also receives no one-on-one therapy.
The Problem of Nowhere To Go
Trying to engage and care for both high- and low-functioning patients always poses a challenge. This speaks to a larger identity crisis facing New Jersey's state facilities, which for a long time have had to treat extremely acute cases alongside a majority of patients who were ready to return to their outside lives.
Most of New Jersey's psychiatric patients, when they were finished with their treatment, had nowhere to go. So they stayed. Over half of them for one to five years.
This situation led to a lawsuit. The recent Olmstead settlement sets out a five-year plan to place those patients who have been determined ready for discharge more swiftly into supportive housing in the community.
Progress has already been made; the percentage of Greystone's patients that have been determined to be well enough to live outside its gates is down to 40, according to Young. One man just left who had been ready for discharge for 17 years.
But the infrastructure doesn't yet exist to support everybody in community housing. Andrus claims all his assets were taken when he was arrested, so he's waiting for a voucher from the state before he can support himself on the outside.
"They took everything I owned. I don't even have ID," he said. "I'm nobody."
The petition raises serious and longstanding questions about New Jersey's state psychiatric treatment. But on the bright side, the patients would never have been able to work together to articulate those complaints, said Lubitz, if the hospital "wasn't doing some things right."
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