Fall 1996 Human Rights Magazine

By Thad Rueter

In 1931, a mother asked a New York judge to declare her 19-year-old son, Fred Lewis*, insane, stating, in a signed petition, that Fred was "unemployed, nervous, excitable, very irritable, difficult to control, threatened my life with a knife, complains he is mistreated, talks too much, stays too much to himself and is worried a great deal."

It was a difficult time for Fred and his mother. And for society at large. The U.S. was in the depths of the Great Depression.

Two doctors signed the petition. Without conducting a hearing, the judge committed Lewis to Bellevue psychiatric hospital, the first stop of many New York City mental patients on their way to more extended-care hospitals further east on Long Island. Soon after that, Lewis was taken to Pilgrim State Psychiatric Center, where he was labeled a "voluntary patient," and where he spent the next 60 years.

Enter Samuel Levine, a Long Island attorney who has been serving as Lewis's court-appointed conservator, in a case that challenges the way long-term patients are treated and whether the rights of those patients have been violated.

Levine admits that Lewis has emotional problems--Lewis does not even recognize Levine. No matter. Levine has filed suit in the Supreme Court of New York, Nassau County, against the state mental health office, the former governor of New York and the director of Pilgrim State Psychiatric Center on the behalf of Lewis and the two other long-term mental patients he represents.

Levine charges that the state violated the due process rights of these three patients by denying them regular court hearings to review their hospitalizations. Levine also says the staff of Pilgrim was negligent in its care of the three patients by providing treatment that did not match up to modern medical standards claims that appear to be substantiated by both a 1991 Justice Department investigation and earlier eyewitness accounts.

"Criminals are treated better than mental patients," Levine says. He originally intended Levine v. Surles (No. 13456/93) to cover more than three of the 8,000 long-term (defined as more than a year) patients currently in New York state mental institutions, and the 200,000 who have been in that category in the last 60 years. A judge denied the class-action motion, but Levine hopes a victory in this case affects not only New York mental institutions, but those across the country.

"The public is spending hundreds of millions of dollars in a system that's flawed and violates the civil rights of those who must use it," he says. "We must put an end to the state institutional system."

Police picked up Bertha White* in 1947. White is another of the three long-term patients listed on Levine's complaint. According to her petition, which, like Lewis's, required the signature of two doctors and a relative, White "became violent on the street. She started screaming that people wanted to kill her. She was bewildered, quiet and cooperative. Marked psychomotor retardation. Admitted having enemies; heard voices; was found on street screaming."

She was committed her to Bellevue, and was moved soon after to Central Islip Psychiatric Center on Long Island. In 1969, White was labeled a "voluntary" patient. Now 83, she is still in a locked ward at Central Islip, suffering from regressed schizophrenia.

White did not receive a court review of her hospitalization until 1990. The New York Mental Hygiene law of 1965 did not require that "voluntary" patients get court hearings because they were, in theory at least, permitted to walk out of the institution at any time. When she did get a review, a New York Supreme Court judge ordered her held as an "involuntary" patient entitled to a biannual review.

Levine says the long delay between White's hospitalization in 1947 and her court hearing in 1990 was a violation of her due process rights. With every year she spent locked up at Central Islip, Levine says, White gradually lost touch with her family and friends and increasingly became dependent on the hospital's staff, who was responsible for feeding, clothing, and cleaning her and for other important tasks in her life.

Levine also contends that the staff did not do enough to persuade White to seek a life outside of the institution. She simply withered away.

In addition, Levine contends that the patients did not receive adequate medical treatment that could have helped improve their mental conditions. Instead, he says, Lewis, White and John Matthews* (the third patient in Levine's suit) were prescribed heavy doses of drugs to keep their conditions in check. Levine says these three patients should have received a comprehensive program of medical and psychiatric treatment which included drugs, psychotherapy and rehabilitation, and counseling to make them able to perform daily tasks.

"These patients were allowed to regress to vegetative states due to inadequate care," he says. "Such treatment departs from normal, 20th century, standards of practice." This regression may have been most poignant in the case of Matthews. In 1959, a judge sent the 55-year-old patient to Bellevue, then to Pilgrim, because Matthews was "disoriented for time, place and person ... drinks alcohol heavily ... is unsteady, tremulous and confused and (has no) judgment and insight." Matthews received a court hearing in 1994, but died soon after.

"For being a drunk on the streets of New York, he got a life sentence," says Levine, who terms Matthews the "most tragic" of the three. "But they all became life sentence patients and I want to be quoted that way because they got sick on the streets of the city. I call places like Pilgrims state psychiatric jails, not hospitals, and I'm doing everything I can to close them."

The Justice Department came to similar, if more bureaucratically reserved, conclusions. In a 1992 letter to former New York Governor Mario Cuomo, the federal government lists the conditions at Pilgrim which "deprive patients of their constitutional rights" due to "serious deficiencies" in patient care. In the previous year's investigation of Pilgrim, the federal government found that hospital staff had wrongly diagnosed patients, and kept poor records of their medical history, which often led to drug doses that were too large or unnecessary.

The widespread use of antipsychotics was specifically cited because such drugs were "a means to sedate agitated or unruly patients during nights and weekends, when staffing is at its lowest, to compensate for inadequate number of personnel," according to the report. Due to this, some patients developed tardive dyskinesia, a kind permanent nerve damage that causes involuntary muscle spasms.

Pilgrim doctors were also cited for responding slowly to medical emergencies, which contributed to several patient deaths. Staff shortages, too, were acute. Forty percent of patients were over the age of 63, yet Pilgrim employed no geriatrician. And on some weekends, 100 patients would be under the care of one nurse; over one April night, investigators found, two nurses were responsible for 263 patients.

According to an article in the July 9, 1992 issue of Newsday, the patient-to-nurse ratio at Pilgrim at the time of the federal investigation was the worse of any New York state psychiatric hospital.

Other Justice Department complaints include "inadequate development, implementation and monitoring of patient treatment plans, including behavior programs" and "the use of chemical restraints in lieu of treatment programs." In summary, the letter continues, "patients (are being deprived) of their constitutional rights to adequate medical care ... and such treatment ... as an appropriate professional would consider reasonable to ensure safety and freedom from undue bodily or chemical restraints."

Pilgrim officials would not return phone calls, and the New York state office of mental health would not comment on the specifics of a pending case. But Roger Kingman, the spokesperson for the office, points out that Pilgrim was recently reaccredited for three years by the Joint Commission of Accreditation of Healthcare Organizations. This is in addition to the recertification from the U.S. Health Care Finance Administration, the supervisor of Medicaid and Medicare payments to hospitals, which found that Pilgrim met staffing and record-keeping requirements.

Two earlier eyewitness accounts, though, suggest that conditions found by the Justice Department at Pilgrim were more widespread both in terms of location and time period. Dr. Russell Barton, who served as the director of Rochester (New York) State Mental Hospital for all but three years in the 1970s, and who now operates a private psychiatric practice in the state, will serve as a witness for the plaintiff in Levine v. Surles. Barton has seen how drugs and the distance between hospitals and patient's homes foster isolation, and a dependence upon the staff.

"The members of the staff were the stars in the patient's lives," Barton says, adding that the "stars" would boss around their charges and shout at them and handle them roughly. Is in any wonder, Barton asks, that patients were often "convinced" not to push for court reviews? Patients were also forced to be idle, Barton continues, because they weren't legally allowed to work for less than minimum wage; the only thing left to do was to watch TV in the sitting room.

Barton couldn't do much about this, he says, but in his seven years as director of Rochester, he tried to get his staff, especially the nurses, to be more respectful of the patients, and to clean up wards that were filled with flies, dirty aprons and excessive noise, and whose windows had thick security bars over them. But he says that his views didn't easily "filter down" through the bureaucratic structure of the hospital's staff.

If Levine does prevail in his current lawsuit, he may force the closing of Pilgrim. He is seeking $200 million in damages, to be set aside in a trust fund that would improve care and treatment for mental patients, especially long term ones, in the New York mental health system. Levine hopes a court victory would serve as a precedent for similar cases on behalf of long term patients, and perhaps lead to the closing of all state-run mental institutions.

Levine would like to see mental hospitals privatized. According to his plan, many patients would receive treatment in smaller centers based in communities. Each patient would also have an advocate from admittance to discharge. This advocate would ensure that due process procedures are followed, and that the patient receives proper care. Not everyone shares Levine's desire to remove the state from all but monitoring duties in the mental-health care system. Barton thinks private hospitals abuse patients in the same way as state-run facilities.

Michael Perlin, a former director of the division on Mental Health Advocacy of New York, the author of a three-volume work on mental health law, and a professor at New York Law School, says the track record of private hospitals is a "total disaster." He says the "travel-agent mentality" would dominate mental institutions if corporations took over, with doctors getting points for each referral to a particular hospital.

Instead, he agrees with Barton in believing that the low-morale of hospital staffs, who are overworked and underpaid, has a lot to do with the mistreatment of patients. Barring any improvement in this area, though, Perlin says that new laws are needed to protect the patient during admissions, during care, and after discharge.

"We need to make sure that treatment is needed in the first place, and if it is, then every patient should have the right to proper care, which should return that patient to a normal life, if possible" he says. "And once that patient is discharged, he should have a right to adequate aftercare that will keep him from coming through the door again." Perlin also wants to increase the criminal liability for staff members who physically sexually assault, or steal from, mental patients. He also says the laws currently on the books need to be enforced and, like Levine, he proposes a broader role for advocates in the mental health system, which would include more federal and state money for advocacy programs.

With better care and more advocates, perhaps, will come more "amazing exceptions," as Levine says, that are similar to Lewis's. In spite of his 60-year stay, and mental regression, in Pilgrim, Lewis was discharged to a family-care program in 1992, where he continues to live a private life in a small community. No matter what happens in the case, or with the privatization of hospitals, Levine will undoubtedly make more people aware of what's going on in New York state mental institutions. And awareness is a prerequisite for change.

*not their real names

Thad Rueter is a writer living in Urbana, Illinois.

As published in Human Rights, Fall 1996, Vol. 23, No. 4, p.18-19.