Free to Die

From The Oregonian, December 30, 2002 – not available elsewhere online

In the past three decades Oregon has made it much harder to send mentally ill people to institutions against their will. Today, those laws prevent some of the most severely ill Oregonians from getting the treatment they need.

An investigation by The Oregonian has found that at least 28 people have died in the past 3-1/2 years in the state after doctors, county mental health workers and other officials unsuccessfully sought to send them to psychiatric hospitals without their permission. The problem is almost certainly more widespread. The Oregonian studied only those whose deaths were documented in Department of Human Services records.

Judges, doctors and mental health workers say the laws intended to protect patients often work against them.

“I have had a number of cases in which I very much felt the people should be hospitalized,” said Multnomah County Circuit Judge Lewis Lawrence, who hears more involuntary hospitalization cases than any judge in the state. “But they weren’t committable under the law. And I felt terrible because I knew I was sending them to an unknown, perhaps horrific, fate.”

The painful life and tragic death of Mary Boos, a Portland woman with paranoid schizophrenia, is one such case.

Mental health workers, her parents and two court psychiatrists agreed that Boos, 40, was in grave danger and should be hospitalized. A judge, not Lawrence, refused, saying her case didn’t meet Oregon’s standard, under which a person must be a danger to herself, others or unable to provide for her basic personal needs. The Oregon Court of Appeals has told judges not to force patients into treatment unless they are unable to “survive in the near future.”

Boos lived 10 more months. But without treatment, she sank so deeply into her delusions that she would not leave her apartment. She would not eat the food her parents faithfully and frantically set outside the door no law could make her open. Her decomposing remains were found almost a year later on Oct. 20, 1997. The medical examiner ruled she died of “natural causes probably related to schizophrenia.” In other words, she starved to death.

Oregon lawmakers have been reluctant to touch the politically charged issue. In response to Boos’ death, they did add some provisions making it easier to hospitalize chronically mentally ill people. But because the process is so restrictive, judges and mental health officials acknowledge that the additional criteria rarely are used.

The laws in Oregon and other states were drafted as part of a nationwide reform in the 1960s spawned by revelations that thousands of Americans had been locked away against their will in barbaric, state-run psychiatric hospitals.

The reforms closed many of the hospitals and made it much harder for doctors or state officials to hospitalize, or “commit,” people without their consent. Reformers envisioned a benevolent system in which patients would have the deciding voice in determining their course of treatment. Studies in the past three decades have shown that this approach ignores the medical reality that severely ill people are sometimes too sick to recognize they need help.

“Nearly 30 years ago civil libertarians forced a national agenda that has made it virtually impossible to treat a large number of people with severe psychiatric disorders,” said Dr. E. Fuller Torrey, author of two books calling deinstitutionalization a “failed social experiment.”

Torrey said Oregon has been particularly reluctant to use civil commitment because of its tradition ” of independent living and not wanting government to interfere.”

As outraged as many people were by Boos’ death, which was openly discussed by her family, others said it was her right to decide and, ultimately, to die.

“As a society, we have set a very high bar,” Lawrence said. “We’re saying this is someone’s freedom. Who are we to try to control eccentricity if it’s not causing immediate harm?”

Even supporters of forced hospitalization in extreme cases do not want a return to the dehumanizing conditions depicted in “One Flew Over the Cuckoo’s Nest,” a movie filmed at Oregon State Hospital.

“Institutional care is really grim,” said Dr. Peter Davidson, head of Multnomah County’s mental health department. “We don’t have to force treatment on people all the time. We don’t have to ignore them, either.”

Illness creeps in

Mary Boos was raised on a maple-canopied block in Portland’s Laurelhurst neighborhood. A faded snapshot shows a toddler with blunt-cut bangs in a crisp cotton dress wedged and grinning between her two sisters.

At Laurelhurst Elementary School, Boos was curious and quick. At Grant High School, energetic and popular. By her sophomore year at the University of Oregon, she was sullen and withdrawn.

Boos managed to graduate with a bachelor’s degree in recreational therapy but couldn’t keep a job. A position as a nursing home activities director ended after three months when she was unable to follow through on basic tasks.

Many schizophrenics experience a sudden split with reality. The illness crept up on Boos so quietly that her family was left for years to wonder what was wrong.

When her parents, Carol and Richard Boos, finally persuaded her to confide in them, Boos couldn’t stop. During an eight-hour rant, she told them that the FBI and CIA were engaged in a conspiracy against her.

The Booses used their insurance to try to get her help, but their daughter wouldn’t go. Studies show that about half the people with schizophrenia or bipolar disorder are afflicted with a little understood symptom of the illness: lack of insight. That is, the disease impairs the part of the brain that enables them to evaluate themselves. In her mind, Boos didn’t need mental health treatment — she needed protection from the government operatives who were stalking her.

By the late 1980s, Boos’ parents put her up in a Northeast Portland apartment, which she decorated with an artist’s eye and yards of white linen. But before long, Boos was too paranoid to venture out.

The Booses thought their daughter needed to be hospitalized, so they turned to the public system. There, a mental health worker gave this advice: Stop supporting her. She’ll be evicted, act out violently and be hospitalized.

The worker knew that without Boos’ permission, the state could not intervene until she was a danger to herself or others. If she could be provoked into a violent outburst, chances were good that authorities would initiate the civil commitment process.

The Booses didn’t understand why they had to abandon their child to help her, but they went with the plan.

Eviction notices soon fluttered on Boos’ long-unopened door. But when a Multnomah County sheriff’s deputy came to remove her, she did not erupt. Instead, she collected her belongings, placed them on the porch and walked away in silence.

She was gone for a week. The Booses canvassed parks with her photo. Late one night, they heard a scraping sound on their patio. It was their daughter, disheveled and delusional, pulling up a chair to sleep.

Boos moved in with her parents but tumbled deeper into illness. She emerged from her room only to sneak unopened cans of food upstairs, checking them for tampering because she feared neighbors were poisoning them.

Carol Boos, confronting her worst fear, bought a book about schizophrenia and read it in secret. She once forgot and left it on a table.

“I do not have schizophrenia!” Boos screamed when she saw it.

The Booses called the public mental health system again. Weeks passed before a case manager visited their home.

On the day of the appointment, Boos came downstairs, fully dressed for the first time in weeks.

“The caseworker’s going to be here,” Carol Boos remembers telling her daughter.

“Not for me,” Boos said and walked out the door.

Hospitalized in South Carolina

As her parents frantically looked for her, Boos crisscrossed the country for 11 months in 1989 and 1990, searching for clues about why the government was after her.

She lived on the kindness of strangers. Passers-by slipped coins into her hands. Truck-stop waitresses tucked sandwiches in her pockets. But mental health officials in at least five states did nothing.

In Washington, a Pierce County sheriff’s deputy called Western Washington Mental Hospital when Boos showed up, talking of conspiracy. A hospital worker “talked to her for a while and said, ‘Well, nice meeting you, Mary,’ and left,” the deputy later told the Booses.

From there, Boos hitchhiked to Washington, D.C., and parked herself in the lobby of the Pentagon, records show, rambling that she’d been drugged as a child and in college.

“They told me they had nothing,” Boos later wrote in a letter to family. “But a Pentagon official said there was something too confidential for me to know.”

From there, Boos took a bus to New Jersey to find a lawyer who could force the Pentagon to cooperate. Social services workers there gave Boos a bus ticket to New York, a tactic social scientists have dubbed “Greyhound therapy.”

Boos slept on the steps of a Roman Catholic Church in New York City, where nuns fed her and helped her secure welfare benefits. But she wandered the streets delusional and afraid. After several months, Boos handed her welfare check to a bus ticket agent and asked, “How far will this take me?”

The Booses didn’t learn what had become of her until a family in Columbia, S.C., called police late one night in May 1990 to report that a psychotic woman was wandering their property.

They called the highest mental health officials in Oregon and South Carolina. Both states told them Boos was not an imminent danger to herself and could not be involuntarily committed.

“The law doesn’t mean just an immediate danger of going without a meal,” said Lawrence, the Multnomah County judge. “It means immediate danger of serious bodily harm or death. That is such a subjective area . . . . People who are on the streets and who are in need of fairly substantial medical care are still not committable because they’re not going to become seriously ill at any appreciable time in the near future.”

Kay McCrary, a mental health worker who learned about Boos through a family organization that tracks missing mentally ill people, thought otherwise.

She petitioned a South Carolina court without her boss’s permission. “I know that sometimes a person has to do the right thing,” she wrote to the Booses in 1991. “So, the next Mary Boos who comes homeless to Columbia won’t be left to their symptoms, deserted by the mental health system.”

Boos spent the next five weeks at the Bryan Psychiatric Hospital in Columbia. She would have been sent straight back to Oregon, but none of the state’s psychiatric hospitals had an open bed.

Boos was outraged when she was placed in a straitjacket and medicated against her will with Haldol, a highly potent antipsychotic drug with harsh side effects. But in less than two weeks, her psychosis dissipated.

She was diagnosed with paranoid schizophrenia and attended classes about the illness.

Boos began a new life.

“Getting here, in the hospital under medication, is what it took to free me from the thoughts and thinking I had,” she wrote her family. “It really was all my illness’ fault because now I can see how irrational I was. I’m determined to beat this illness as best as I possibly can.”

Brief respite, then lost
The brief hospital stay made it possible for Boos to function on her own for three years.

Back in Oregon in the summer of 1990, she faithfully took her medication and met with her Multnomah County mental health case manager.

Once too afraid to venture outside her apartment, she mingled with friends and family and joined a new church. She talked openly about her illness, sometimes even joking about it.

Boos’ improvement illustrates what reformers had in mind when they closed state-run mental hospitals: Although chronically ill patients might need occasional hospitalization, they would not have to be sent away for life.

But mentally ill people need structure and support to remain stable. At the same time civil libertarians made it difficult to treat those who refuse it, lawmakers, advocacy groups and mental health officials say the state abdicated its responsibility for the mentally ill, slashing budgets and cutting the very services that can keep them from ever needing involuntary care.Because of her parents, Boos had more help than most. It still wasn’t enough.

As with many patients, the side effects of Haldol — lethargy, blurred vision and involuntary facial movements — made it difficult for Boos to hold down anything but a menial job. Her parents remember her offense at being given a position “sorting screws” at a day treatment program.

But when Boos got her own job at a foster home for the developmentally disabled, she was so confused that on the third day she showed up at 8 p.m. instead of 8 a.m. and never returned.

Another problem: Boos, always a svelte beauty, had gained at least 60 pounds, another dangerous but common side effect of the drug.

In early 1993, Boos asked her Multnomah County psychiatrist to change her medication to Moban, a less potent antipsychotic medication that was less likely to cause weight gain and seizures.

It failed to control her illness.

A few months later, Boos was convinced that God had healed her and that she no longer needed medication. By October, she would talk to her parents only through her apartment window, which she had decorated with crosses.

Neighbors heard her chanting night and day. She stopped paying her rent.

Afraid she would run away if they again forced treatment, on Dec. 18, 1993, the Booses wrote a letter to the director of their daughter’s mental health agency, begging for help. “In her way, she has given us all plenty of warning. Now we must take action,” they wrote.

In Oregon the process to involuntarily commit someone can begin when two people sign a paper saying someone is a danger to herself. The Boos’ persuaded their daughter’s caseworker to sign such a document, and that allowed Boos to be temporarily hospitalized until a judge could determine whether she needed more long-term treatment.

A judge sent Boos to Adventist Medical Center on Jan. 26, 1994. She was released in slightly better condition after just two weeks of medication. But doctors did not change the medication to what had worked in the past, allowing her to stay on the less-potent Moban.

Boos soon slipped back into darkness. She kept no food in her apartment. She wore the same clothes day after day. She didn’t recognize her sisters.

When her parents came to her door, she smiled, took her father’s hand and said, “Dead.” She then took her mother’s hand and said, “Dead.”

This time the Booses petitioned the court on their own. They said the case manager had never checked on Boos after her release from the hospital nine months before.

After a petition, such cases are first assessed by county investigators, who interview the patient. Boos was hostile when the investigator came to her door. She demanded to see the paperwork, grabbed it from his hand and refused to return it. The investigator noted that Boos shouted at the voices in her head to, “Shut up! Shut up!” Asked whether she had taken her medications, she said, “Poison is your war.”

The investigator agreed that Boos was a danger to herself. Sheriff’s deputies pulled her kicking and screaming from her apartment. She told them they were from Satan.

At a hearing on Dec. 22, 1996, two psychiatrists recommended Boos for treatment, saying she was incoherent.

Boos’ court-appointed lawyer argued what she was paid by the state to argue: Boos might be a danger to herself, but not an imminent danger. The judge agreed and released Boos. She left the courtroom wearing nothing but a flimsy hospital gown.

When her father learned that her lawyer planned to put Boos on a bus to her apartment, he slipped $20 to a court official and said, “At least put her in a cab.”

They never saw her again.

Ten months passed. Boos sat inside her apartment and chanted.

The Booses wanted to pound the door down, but were told they could be arrested if they did. They left groceries at Boos’ door but had no idea whether she ate them or threw them away.

The county mental health agency charged with her care never sought her out, records show. When a mental health provider finally visited her apartment, Boos told him to go away. The agency complied and took her off the rolls. Under law, the agency could not force her to accept services. And it would not be paid for unproductive visits.

Mary Boos was found dead on Oct. 20, 1997.

State mental health officials at the highest levels sent their condolences to the Booses with a promise that they would investigate the circumstances of their daughter’s death. More than five years later, the Booses haven’t heard back.

A family friend, Eugene Minnard, lobbied legislators to dramatically change the laws. But the bills never made it out of committee.

Only after their daughter’s death were the Booses allowed to go into her apartment. They were horrified at what they saw.

The place was void of food or personal items but for some heirloom dishes Boos had ritualistically laid on the floor. Her curtains hung in tatters, and her bed was shredded, soiled and propped up on one corner by telephone books.

In the years since, the Booses have campaigned for changes in Oregon’s involuntary hospitalization laws, so far to no avail. They take small comfort in letters their daughter sent them from a psychiatric hospital in South Carolina, thanking them for never abandoning her to her illness.

“I really can’t thank you enough for that,” Mary Boos wrote. “I just hope I could do the same for you if you needed.”