In recent years, the mentally ill have made greater claims on their civil rights, including the right not to be treated. But what happens when part of your illness is not knowing that you're sick?
By Clea Simon
NOVEMBER 17, 1997: Ally's son has been talking to himself. He's been scaring people in their small town, wanting to chat in his particularly intense way, and pushing himself in the face of those who try to walk away.
Ally isn't surprised. She'd seen the signs that Greg, 38, was not taking his new drug, olanzapine, weeks ago.
Ally has been through this before, through more than 25 hospitalizations -- since Greg's schizophrenia was first diagnosed 20 years ago. After one such hospitalization, after the delusions and feelings of persecution faded, he stayed on one of the new miracle drugs, clozapine, for more than two years. That's when they were able to set him up in a subsidized apartment nearby, and when he first tried going back to school. But then he tapered off again -- one of the thousands of mentally ill people who do so, against medical advice.
Ally knows that trying to get her son back into voluntary treatment won't work. "If I say to him, 'Why don't you talk to a doctor?' he just stares at me and says, 'Why don't you talk to a doctor?' He has never accepted that he is ill."
Usually, having him hospitalized means calling the police and the fire department to have him involuntarily committed. Ally laughs with resignation and exhaustion at her own tales of household destruction: the flooding tubs in locked bathrooms, the filth and the broken glass. She talks about the time Greg pulled himself together and convinced the judge at his commitment hearing that he could take care of himself. And then took off on a cross-country odyssey that ended only when a relative retrieved him, barefoot and confused, from the Denver airport.
This time, Ally doesn't want to scare Greg, doesn't want him to bolt and turn up weeks later, dirty, even skinnier than he is now, perhaps beaten or abused. She is waiting until his decompensation -- his decline into another cycle of psychosis -- has gone far enough to be apparent to any judge, and then she will try to have him hospitalized again. She believes he isn't violent or consciously suicidal, and these are the only two legal reasons to hospitalize anyone against his will in Massachusetts, at least until he is so sick, so clearly ill, that his well-being is in danger. She knows she is pitting her wishes -- her desire to care for Greg and her fears for his safety -- against his legal right as an adult to determine how and where he will live. She worries too much to do otherwise.
For now, Ally waits until he is in such bad shape that it will be obvious that he cannot take care of himself. It breaks her heart to see him rail-thin, so dirty. It scares her to think of his delusions, his periods of catatonia -- of blank unresponsiveness -- particularly when she considers that one of these may occur as he drives his beat-up car around their small New England village. She no longer hopes for a cure; she just hopes that this time she pulls a good judge.
Ally's concerns seem reasonable, but the issues surrounding involuntary hospitalization and medication aren't always simple, particularly to those who get such treatment.
Chrissie, for example, has accepted that taking medications is part of the deal, but she doesn't like them and she doesn't like the mental health system that treats her, she says, like a child -- or a criminal. Chrissie, 48, is part of the roughly 1 percent of the population that has a schizophrenia-type illness, and as long as she stays on her Depakote, she can keep on living here in her subsidized city apartment. Her psychiatrist has even written the landlord that Chrissie's cat, Mia, is necessary for therapeutic purposes. But the drugs that make up her daily regimen have made her heavy, a common side effect of antipsychotics and one that particularly rankles her. She also believes that the lithium she took for 10 years to help treat her schizoaffective disorder -- to calm the mood swings that accompanied her delusions and aural hallucinations -- contributed to the diabetes that further slows her down.
Now she lumbers around her apartment, talking about her early years, when she was lithe and pretty. She remembers the good times she had with her younger sister. She talks about the fruit trees, one apple and one pear, in their back yard. And then moves on to the horror stories that began when she separated from an alcoholic, abusive husband shortly before the birth of their child.
Back when she first returned to her parents' house to live, Chrissie and her family thought she had postpartum depression. "I was crying a lot, and I went down to the basement and my mother followed me. They thought I might hang myself," she recalls. The next day she joined her parents for a 45-minute session with a local psychiatrist. They took her directly from his office to the state hospital, warned her friends against visiting, and fought with her about caring for her baby on the few weekends home that she was allowed during her months-long stay. She tells of another patient who attacked her, pulling out handfuls of her hair before guards intervened. "I still have nightmares about what went on there," she says.
Since then, the system has only treated her worse. She was living in a group home, she says, watching TV by herself, when eight policemen came to the door. "They didn't say where they were going to take me. They didn't say why," she says. "They just said they were taking me. They put my hands behind my back and shoved me. I was crying because it hurt so much, because of the meanness."
Chrissie has more tales of mistreatment -- of a hospital worker who threw her in a room filthy with urine and feces, and of another who burned her feet. Sometimes what Chrissie says doesn't quite make sense, and a visitor may wonder how many of her memories are influenced by past delusions. But even if the details are exaggerated, the fear behind them is real. "I was so scared," she repeats again and again, while telling stories of drugs and manhandling. Perhaps some responsible doctor, some kindly social worker, was actually there each time, trying to calm her down, to explain a procedure or the reason for a restraint. In any event, nobody got through to her, and she is left with the idea that she has very few rights. "Psychiatric hospitalization is like being in prison," she says. "They can say you've done anything."
Chrissie's tale sounds like a nightmare. Locked up, drugged, perhaps beaten, for reasons you don't know or understand. For some, this bad dream comes horribly true: a Boston Globe Spotlight Team last May discovered several disturbing stories in which involuntary hospitalization was, at best, an iffy call. A despondent woman went to a support group and found herself hospitalized. Another, depressed, sought to end counseling and was committed. Perhaps most tragic, a 64-year-old Holocaust survivor -- who did have a history of mental illness -- died as she was being taken into custody. Thousands of orders for involuntary hospitalization or treatment are taken out in this state (approximately 9000 annually, according to Stan Goldman, director of mental health law at Boston's Committee of Public Counsel Services); as these stories make clear, many may be misguided, some perhaps tragically so.
But the consequences are equally nightmarish when treatment comes too late, or not at all. Think of the recent New Jersey case in which a 15-year-old was charged with the sexual abuse and murder of a younger boy. The accused murderer's parents had tried to have the teen, also a victim of abuse, hospitalized several weeks before he allegedly sodomized and killed his 11-year-old victim. They believed he needed professional assistance, the state prosecutor told the New York Times. "We took him to a hospital and he refused to enter. He refused counseling. . . . I can't conceive of anything more we could have done in a democratic society to restrain this boy."
These cases are, of course, extreme. And in each, the question of whether to impose involuntary treatment or hospitalization seems simple: of course, the 64-year-old Holocaust survivor should have been treated more gently and not taken against her will. And obviously, the abused teen was dangerous, even if some judge at a commitment hearing missed the signs. But if these examples illustrate how much responsibility falls on those who make the decisions, they barely begin to show how difficult most such cases are.
Consider the scene one frigid winter night, not long ago. The police pick up a woman who seems to be acting irrationally. She's been getting in people's faces, demanding coffee, crossing carelessly into the street. The cops bundle her into their car and ask if she wants to go to a shelter. No, no, no, no, she's adamant about that. Taking cues from her behavior, from her somewhat garbled speech, they bring her to the Massachusetts Mental Health Center instead. It's 16 degrees out, and they'd like to find a place for her to spend the night. The doctor on duty meets with her and asks if she'd like to check herself in. No, no, no, no. She sure doesn't want to do that. All she wants, she keeps repeating, is coffee. The doctor weighs the evidence. The police didn't say she was actually in traffic, just that she was darting into the streets and being a little too aggressive in chatting people up. She seems to know the shelter system well, and she promises to come back for treatment the next day. He gives her coffee and lets her walk back out into the cold.
That's just how it has to work sometimes, says Dr. Ken Duckworth, medical director of continuing care service at the center, who was the clinician on duty that night. "There are definitely times when it's the right thing to say 'I respect your right to refuse treatment, even though I think you're going to run into problems because of your decision.' "
But if a distraught family member had been on the phone when the coffee lady came in, begging him to admit this mother/daughter/sister, Duckworth says now that he does not know what he would have done. He brings up a similar situation, when he spoke at a hearing to have a man declared incompetent. The man won the right to make his own treatment decisions, and he walked out into the winter. A year later, he wandered into Duckworth's clinic again. He had lost all his fingers and toes to frostbite.
Should Duckworth have committed the coffee lady? Should he have fought harder to win the incompetency hearing for the man who lost his toes and fingers? Is it his place to make those decisions at all?
Philosophically, the issue is confused, a symptom of a deep underlying crisis of definition, even of morals, in our view of health care. The public is torn between the old-school paternalistic style of medicine, the kind in which the doctor simply told you what was best, and a more consumer-oriented approach of comparison shopping and free choices.
In other areas of medicine, health care consumers have almost entirely made that switch. Many people who have received diagnoses of cancer read up on treatments, considering alternative therapies before deciding about radiation or chemo. For most surgery, we routinely solicit second opinions. But in the case of mental illness, the options are not so clear. When someone's judgment is impaired, does that person know how to act in his or her own best interest? Should the patient be allowed to choose, no matter what?
The debate surrounding treatment of the mentally ill is a hodgepodge of all these issues. It involves conflict between the rights of the individual and the needs of the society, and also the responsibility of the society to care for those who cannot care for themselves.
Legally, the power to sort all this out lies with the courts, and the laws are beginning to reflect the serious moral issues raised by involuntary treatment. Under Massachusetts law, a judge can hospitalize a person involuntarily for six months (with recommitment hearings held every year after that) when -- to use the legal language -- there is reason to believe that "failure to hospitalize would create a likelihood of serious harm by reason of mental illness." In other words, when Chrissie's parents feared she was suicidal, they had clear legal grounds for involuntary hospitalization, just as Duckworth would have had if the coffee lady had been threatening the people on the street. The idea of "serious harm," however, is at best murky, and as the public swings more toward a consumer-oriented approach to all health care, mental health practitioners and legislators are becoming more aware of the weight of their responsibility -- and more wary of second-guessing others' "best interests."
"It is very important for those of us who are the practitioners to remember that the only time you can deprive someone of their rights other than [when they're] jailed is to involuntarily hospitalize someone," says Marylou Sudders, commissioner of the state's Department of Mental Health. "So I always remind people that it has to be under very narrow provisions."
Even the process leading to such treatment is now being questioned. Involuntary hospitalization comes about, usually, because a doctor or hospital representative has requested it. This request leads to a 10-day waiting and observation period while the ill person is temporarily hospitalized, which is in turn followed by a period of up to two weeks during which the request for a hearing is processed. That means that in Massachusetts, an ill person can be held for 24 days before any decision is made on long-term involuntary hospitalization.
Some, including many of the mentally ill, say that is too long -- a legal version of imprisonment without trial. Many are also questioning the length of commitment periods. Because of these growing concerns with patients' civil rights, spurred at least in part by public response to stories like the Globe's, the time leading up to the trial-type hearings may soon be reduced. On October 21, a committee led by Judge Maurice Richardson, chairman of the District Court Committee on Mental Health and Retardation, released recommendations that would cut in half the time in which a person may be held before a hearing. His committee is also thinking about a recommendation to shorten the initial six-month commitment.
The mentally ill also have the option, now, to fight against commitment -- against, in other words, what their parents and doctors may think best for them. Since the 1970s, when only two physicians were necessary to sign commitment papers, laws have evolved so that commitment hearings have become more like miniature trials, complete with court-appointed attorneys for the defense. Calling doctors and sometimes family members to testify, the hospital has to prove three points: that the patient is mentally ill; that he or she presents a likelihood of harm to self or others; and that there's no less restrictive alternative.
That last clause provides a bit of leeway. Less restrictive alternatives can include group halfway houses (in which the ill have some supervision, but also are able to live in communities and exercise some freedom about their activities). Another option is a Rogers, or proxy, guardianship, in which a judge rules that a person with mental illness is incompetent to make decisions about his or her own treatment but does not necessarily need to be hospitalized. A Rogers ruling (named for the 1983 case that established such guardianships) appoints a guardian to make medication or living-situation decisions for an ill person, but otherwise allows the person to live independently. That may be a more attractive choice than hospitalization; in fact, hearings about such guardianships now make up about 60 percent of all commitment hearings, according to Stan Goldman. But this still means a loss of choice for the ill person.
As the laws stand now, nobody is happy. The mentally ill say that even guardianships deprive people of their freedom. And their family members worry that the push for expanded rights is a misguided move that will allow their loved ones to grow sicker and more at risk before they can be forced to get better. With more than 20 years on the circuit, Richardson feels his hands are often legally tied. "A lot of the time you just have to sit back and do nothing," says the judge. "You've got to wait basically until the person hits the gong enough to register danger."
Part of the problem here is that mental illness is so different from physical illness. In the popular conception of illness, we feel bad when we're sick, and we want to get better. Don't those with schizophrenia, schizoaffective disorder, and bipolar disorder also want to get well? No, say the 3170 people hospitalized against their will this past year in state facilities alone. Some believed that the treatment wouldn't help; some felt that the treatment would be worse than the disease. Others rejected the notion that they were ill at all.
But that reasoning may not be a choice so much as a symptom. A recent study published in the Archives of General Psychiatry found that of 412 individuals with psychoses, 57 percent -- more than half -- of those with schizophrenia were unaware that they were psychiatrically impaired. That is why someone like E. Fuller Torrey, an advocate for health insurance parity and for treatment of the mentally ill, is adamant in his call for treatment, voluntary or not, in his recent book Out of the Shadows (John Wiley & Sons, 1996). Torrey, a research psychiatrist at the Neuroscience Center of the National Institute of Mental Health, focuses on the frequent inability of those with the most serious mental illnesses to recognize their diseases. "Obviously people who do not believe they are sick see little need for medication compliance," he writes. "Yet, for most people with severe mental illnesses, medications are the single most important component of their treatment plans."
In other words, the people who are least likely to take their drugs are the ones who could benefit most from them.
As Ken Duckworth sees it, the issue is more clouded, with the benefits of medication less absolute and the drawbacks more serious. "Take bipolar [manic depressive] disorder," he says. "I want to give them a medication that makes them feel less powerful, less sexy, less funny, less creative. They don't want it. Is that an insight problem?"
Duckworth has a firsthand understanding of the problems that medications can pose. He was placed on Trilafon, an antipsychotic, to counter nausea while undergoing chemotherapy. The side effects, he says now, were horrible, and included a feeling of disconnection and the restlessness called akathisia. In addition, he developed dystonia, a stiffness in his jaw that is reportedly both common and very disconcerting. "People report these symptoms," he says, "and you wonder if that's the medicine or that's the illness. I can say that it's definitely part of the treatment. I had this 'Aha!' feeling. This is why people don't like to take this medicine."
Sometimes the issue can boil down to family politics. "Consumers of mental health services are in the classic struggles with their families," says Marylou Sudders, "struggles that I went through with my own parents -- that is, 'I can be independent. I'm going to make decisions for myself.' "
But for people with mental illness, those decisions have particularly high stakes. Ally's son Greg has not resumed his medication, and in his untreated state, his psychosis is growing worse. Each day, she doesn't know if he will show up in her living room to stare blankly at the wall. All she knows is that the day is coming when he will become so sick, so out of it, that he will have to be taken away against his will.
For Chrissie, the balance is holding, but it's far from secure. She cannot turn on the vacuum cleaner, because its sound reminds her of the voices of her abusers. She does not dare to question her medications. But for now she is on her own, with her own apartment, free after a fashion to lead her life like any other adult. She, like Ally, knows how quickly this can change. For the state, as for any of us, it's hard to know when to let go.
Clea Simon's Mad House: Growing Up in the Shadow of Mentally Ill
Siblings (Doubleday) was named Book of the Year by the Alliance for the
Mentally Ill (Mass.)
News & Opinion: 1 2 3 4 5 6 7 8 9 10 11
© 1995-99 DesertNet, LLC . The Boston Phoenix . Info Booth . Powered by Dispatch