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Sept. 24, 2007

By Kevin McCormack

Matthew's story For Patti Mar's son Matthew, the first outward sign he was sliding into mental illness began one Thanksgiving when he came home from college. "He seemed depressed," says Mar. "He took some time off and then went back to college". But by March things had taken a much more serious turn. "He called on the phone and was extremely suicidal and we actually had the police go in and get him and take him to the hospital. And that is how it all began".Matthew was eventually diagnosed with bi-polar disorder. Patti Mars says it was a time of great anxiety and frustration for the family, in part because no one ever sat down with them to explain the illness and what their options were. Worse yet, they never fully explained anything to Matthew. 'They simply gave him and us the impression, just take the medication and you'll be fine. They didn't give him any information on the fact that his illness was a lifelong illness, that it was much more than medications, it was a lifestyle change, it was a chemical imbalance in the brain that could occur, relapses could occur."

Relapses did occur on an almost clockwork basis. Every 2 years over the next ten years Matthew was in and out of the hospital. It became a familiar roller-coaster pattern. Matthew would sink in to a deep depression and talk of suicide. He would be admitted to the hospital and stay a few weeks, just long enough to become stable, and then he would be released.

Sometimes the treatment didn't even manage to meet that limited goal. "The treatment plan is way too short" says Mars. "These short, revolving-door treatments are never enough; they don't produce the lasting results you need. They are often released still psychotic, still manic, or still really depressed, either way but definitely not well.

"The danger of this relapse and rebound cycle is that each swing takes the individual ever deeper into their disease. Dr Ira Glick, professor of Psychiatry and Behavioral Sciences at Stanford Medical Center says the effect of this cycle is cumulative. "Each relapse is a setback" says Dr. Glick. "The function after the relapse is worse than it was before the relapse."

The gap between Matthew's episodes got shorter and shorter. When he was in a manic phase he would start multiple projects at once. During a depressed phase he would retreat to his room, he would become increasingly isolated, he would stop talking, eventually he stopped eating.

Like any worried parent, Patti says she worked hard to try and get Matthew to see that he needed help, but his disease often made that impossible. "He would try but, particularly when the mania is present they feel really good, they feel energized and don't realize what is going on, they begin to lose the insight to recognize the changes that are taking place in the brain. It's hard, really hard for them to see it."

As Matthew's condition steadily deteriorated he slipped further and further away from his family, disappearing for 6 weeks, living on the streets. Patti Mars turned to the police and Matthew's psychiatrist for help in getting him into treatment, but she says they told her there was nothing they could do, that his condition was not serious enough for them to be able to intervene.

Dr. Glick says the consequences of that inability to get someone the help they need at an early stage can be enormous. "We know that the longer you wait for treatment, the worse your lifetime prognosis is going to be, the worse you do."For many patients like Matthew, that can mean becoming homeless, turning to alcohol or drugs for relief.

Unable to help themselves, unable even to realize they are at risk, they are easy prey. A study by researchers at the Feinberg School of Medicine at Northwestern University in Chicago found that individuals with severe mental illness are eleven times more likely than other people to be a victim of violent crime.

But that is rarely the picture the public sees, rarely the image portrayed in the media. Instead mental illness is all too often only reported in the newspapers or on TV when someone who is mentally ill commits a violent, often deadly crime.

That was the case with Carla Jacobs' sister-in-law. "Betty never recognized that she had an illness" said Jacobs. "When the demons took her they took her out on the streets with her 8 year old child in tow."

Jacobs and other members of the family tried to get help for Betty but were told she was not sick enough to be forced to accept treatment. That changed with sudden and tragic consequences. "Without any warning Betty qualified for involuntary treatment and became a criminal simultaneously when she took the child and took a taxi and without warning brutally murdered her mother," Jacobs said.

Reforming the Law
Under the current law in California, the Lanterman Petris Short or LPS Act, the only way to force someone into treatment is if they are a danger to themselves or others, or are unable to take care of themselves. Jacobs says her sister-in-law's case shows just how inadequate that law is. "One day Betty was considered competent to be on the streets and raise a child, the next day she is considered too incompetent to aid her own attorney in her defense."

Jacobs is part of a movement in California calling for a reform of LPS to make it easier to force people suffering from severe mental illness into treatment. She says no one wants to do this if it can be avoided, but in some cases there is no real or safe alternative if the individual's condition is deteriorating and they are refusing to get help.

"If the person has been unable to accept those services, and because of their illness they go in and out of the hospital, in and out of jail, in and out of homelessness, that's the time we have to step in." said Jacobs.

But people like Sally Zinman see attempts to change the law as an attack on their freedom. Zinman is the Executive Director of the California Network of Mental Health Clients, an advocacy group for people with mental illness. "People say we are talking about civil rights and they are talking about treatment," says Zinman. "I think having your civil rights is good treatment, I think having choice and self-determination and not having people take that away is the best sort of treatment."

Zinman talks from first hand experience. In her early 30's she became increasingly depressed and withdrawn from her family and her friends. "And then one day I woke up and didn't know who I was. I know who people said I was, but I was sure that wasn't me."

That was the beginning of several years of intense, often forced, efforts on the part of her family to help her. She was taken from her home in New York to a private home in Florida run by a doctor. Zinman says patients who did not cooperate were often treated brutally. "I was beaten by him, there were patients who were sexually abused by him. I had a mattress on the floor to sleep on and a bucket to go to the bathroom in." She says more than 30 years later just talking about it still upsets her.

After two years Zinman says she managed to persuade the doctor that she had recovered and she was released. She says she was no better than when she was first admitted, she had just become more skillful at telling people what they wanted to hear. Her experiences left her determined to help others avoid her fate. 'Even under drugs there is always a part of you that is there, saying I will be back and I will do something about this so that what is happening to me won't happen to other people."

Having experienced what can happen to people judged incapable of taking care of themselves Zinman and other members of the California Network of Mental Health Clients are determined to fight any effort to change LPS.

They say that while forcibly detaining and medicating someone may stabilize them in the short-run, in the long-run it is counter productive. "I think forced treatment hurts one because it leads you away from all treatment," said Zinman. "It destroys people's trust in the system."

Does Forced Treatment Work
Part of the problem in trying to resolve the differences between supporters and opponents of reforming the law is that there are few studies to show whether forced treatment works, and those that have been done show conflicting results.

One study, by Jean Campbell and Ron Schreiber, showed that coercion destroys the trust between people with mental illness and their health care providers, making the patient less likely to seek treatment in the future.

Two more recent studies, looking at involuntary outpatient rather than inpatient treatment programs, reached different conclusions. In assisted outpatient programs (AOT) the individual is under a court order to get treatment. They are given counseling and medication under supervision but are not in a hospital or jail, instead they are allowed to remain in their own home during treatment.

Researchers in New York City compared rates of hospitalization, arrest, homelessness, quality of life, and psychiatric symptoms for mentally ill individuals placed in AOT and a similar group who were offered intensive services but without a court order. They found no significant differences between the two groups.

However, investigators at Duke University in North Carolina carried out a larger, and what many experts say was a much better designed study, and found that those on AOT had fewer relapses, fewer incidents of violent behavior, fewer arrests, and were less likely to be a victim of a crime themselves.

In an overview of these studies a team from the Rand Corporation concluded that "outpatient commitment is neither as effective a solution to the problems of compliance as its advocates claim, nor in its practical application, as repressive a law as consumers/survivors fear."

Questions about the effectiveness of inpatient and outpatient involuntary treatment programs only add to the confusion. In medicine the gold standard for clinical trials in determining if a treatment is effective is the double blind, placebo controlled method. In that neither the researchers nor the patients know who is getting what treatment until the trial is over, that way they cannot influence the findings. Clearly in the case of forced treatment that can never happen because it is all too obvious who is getting treated.

This lack of certainty carries over into the field of diagnosis as well. While scientists and physicians have developed tests to determine if someone has schizophrenia or bipolar disorder, no one has yet come up with a way to determine when the disease has progressed to a point where intervention may be necessary.

Under LPS someone can only be forcibly treated if they cannot take care of themselves, or if they pose a danger to themselves or others. Opponents of the law say we could easily apply these criteria to other groups, smokers for example, who are clearly engaging in behavior that is dangerous to their health, yet we would never forcibly intervene to stop them smoking. Opponents also contrast the way people with mental health problems get treated compared to people with other illnesses. They point out that if a person with type 1 diabetes stops taking their medication we don't lock them up and forcibly inject insulin.

But for people like Patti Mars, whose son Matthew was living on the streets, battling the effects of bipolar disorder, those arguments are disingenuous. "We don't tell people with a heart condition to come back when they have a heart attack and we'll help them then, but if you have a severe mental illness the LPS act basically says come back when you are homicidal or suicidal and we'll see what we can do."

Mars says there is a huge flaw in comparing physical and mental diseases, because a person with diabetes may stop taking their medication based on rational reasons, while someone with a mental health problem lacks the same insight. "They (opponents of forced treatment) say the patient needs to make the decision for themselves even though it's a brain disorder and that person's thinking is distorted, that they really don't have the insight to make those decisions. But for whatever reason opponents hold to the idea that it is best for the patient to make the decision. It's very frustrating."

The History and the Law
This frustration has its roots in the 1960's when California, like many other states, began to change the way it treated people with mental illness. Up till then people with severe mental illness were locked up, often for months, years, or even decades, in state hospitals. The conditions were often inadequate, sometimes inhuman. In the 1960's the Federal Government and the states began a process of de-institutionalization, moving people out of long-term hospitals and back into the community. The idea was to provide them with the treatment, support and services they needed in the community where they would be able to lead more normal lives.

Reality, however, lagged far behind the rhetoric. While people left the hospitals the money did not follow. Helen Thompson, a former California State Assemblywoman, says in a sense the state simply abandoned people. "We had taken the mentally ill, taken them out and put them in the community. We had not done the supportive services in the community, in fact many people left the state hospitals and went into board and rooming facilities and locked facilities in communities and were lost."

Some of those left to fend for themselves ended up homeless. Some ended up in jail or prison. According to Bureau of Justice statistics, an estimated 16 percent of the people in California jails and prisons are suffering from mental illness. The cost to the state, in both financial and human terms, is enormous.

Carla Jacobs says the current system hurts everyone, including her sister-in-law Betty who is locked up for life. "The cost to society has been astronomical. At the time (before Betty killed her mother) it would have taken several thousand dollars to help Betty involuntarily, but after her trial and now her treatment, long term, in a state hospital, she will have cost the system more than $2 million. It's a waste of money and it's a waste of life."

Over the years Jacobs teamed up with Helen Thompson to promote several pieces of legislation to reform the law and make it easier to detain and treat people with severe mental illness. Their first efforts were vetoed by then State Senate leader John Burton who considered them violations of people's civil rights. But in September 2002, with Burton termed-out of office, they succeeded in getting AB1421 passed and signed into law. The bill became known as "Laura's Law". It is named after 19 year old Laura Wilcox who was shot to death at the Nevada County Mental Health office where she worked. Her killer was a Scott Harlan Thorpe who was suffering from serious delusional paranoia.

"Laura's Law" would allow courts to order up to six months of outpatient treatment for a person suffering from a serious mental illness. The law lays down very specific criteria; the individual has to have a history of non-compliance with treatment that has resulted in them being in a hospital or prison at least twice within the past 36 months, or resulted in one or more acts or threats of violence in the past 48 hours. Those ordered to treatment would not be locked up, instead they would be allowed to live in the community but have to take medication under supervision.

Opponents call it regressive and reprehensible, forcing people to take drugs against their will. Thompson has little time for those arguments. "I always had a problem listening to people from the client network saying they didn't want it while they were willing to allow 16 percent of their fellow mentally ill to be in jail or on the streets. I have watched women ravage the trash cans behind restaurants for something to eat. I don't happen to think that is very good."

But while AB1421 was signed into law the legislature provided no money to implement it. If counties wanted to put it into action they had to pay for it themselves. With an estimated statewide cost of $300 million per year it's not surprising that most counties chose not to do anything. So far only Los Angeles County has tried to make it work, but even there it has done so on such a limited basis that it is impossible to determine if it has been effective or not.

"Laura's Law" was modeled on a similar law passed in 1999 by New York State called "Kendra's Law". The law was named after Kendra Webdale, who died after being pushed in front of a train by a man suffering from untreated mental illness.

In March 2005, the New York State Office of Mental Health released an analysis of how effective Kendra's Law had been over the previous 5 years. They found that individuals ordered to take part in assisted outpatient treatment (AOT) were among the most severely ill, and most likely to end up in the hospital, in jail, or on the streets. The report says that after undergoing court ordered treatment 74 percent fewer ended up homeless, 77 percent fewer had to be hospitalized, 83 percent fewer experienced arrest, and 87 percent fewer ended up in jail. Those in the AOT program were also less likely to abuse drugs or alcohol, less likely to harm themselves or others, and less likely to damage property.

Opponents of the law dismissed the report as a selective look at the evidence by a group with a vested interest in showing AOT worked. But their opposition received a second blow when a New York Supreme Court judge ruled that Kendra's Law did not violate patients' constitutional rights to determine their own medical treatment. In what some legal experts say may be a landmark decision, Justice Anthony Cutrona ruled that Kendra's Law provides a reasonable mechanism to protect society.

For Carla Jacobs and supporters of legal reform these laws are pre-emptive ways to prevent further killings. "I think we have an obligation as a society to do everything we can to provide opportunities for people to be treated".

For Sally Zinman and opponents of reform, it's just one more way of treating people with mental illness as second class citizens and driving them away from the help they need. "It destroys people's trust in the system. I also think that choice and exercising control over your life are necessary for recovery and if you don't have it you are not going to recover."

The Medical Perspective
The divide between the two sides seems to grow wider all the time. Even in the area of medications there is a huge gap. Dr. Ira Glick, Professor of Psychiatry at Stanford Medical Center, says the new generation of medications is making life much better for patients. "These anti-psychotics have significant advantages over the first generation, both in terms of efficacy and side effects. It won't cure the illness but it will significantly ameliorate the symptoms so you can live a normal life."

But the drugs, while effective in some patients, are not without problems. "Even the newest ones have horrendous side effects" says Sally Zinman. "They cause weight gain, there is an epidemic of diabetes among people with mental health problems because of the newer, what they call atypical, drugs."

A study by the National Institute of Mental Health in 2005 found that the new antipsychotic drugs were no more effective, and no safer, than an older, cheaper drug. The new medications had been approved by the Food and Drug Administration after studies showed they were safe and more effective than a placebo or sugar pill. The NIMH study was the first to see how these drugs worked in the real world.

The researchers found that all the drugs they looked at caused serious side effects, so much so that three quarters of the patients stopped taking them because of the problems they caused or because they felt no improvement in their condition. The researchers point out this does not mean the drugs do not help people, only that it can be difficult finding the right medication, or combination of medications, for each patient.

Zinman says forcing people to take medications is bad enough. But forcing them to take medications that have such serious side effects is even worse. She says it's ironic that doctors are willing to jeopardize people's physical health in the guise of helping improve their mental health.

But the one thing everyone can agree on is the need for more services to help people with mental illness before their problems become severe. Both sides of the divide say we need more outreach services to offer people counseling and care before they are in crisis, we need improved access to medical care because people with mental health problems may not have the skills or patience to navigate their way through the existing health care bureaucracies, we need more housing to keep them off the streets, and more rehabilitation programs to keep them out of jail.

The passage of Proposition 63, the Mental Health Services Act, in 2004 gave rise to hope that money to fund new services was on the way. Prop 63 added a 1 percent tax on personal income of more than $1 million. A healthy economy has produced a new crop of millionaires and a huge pot of cash, estimated to reach $3 billion over the next three years.

But if there is one consistent theme in California's handling of mental health treatment, it is that nothing ever works out quite the way people think it should. Half of the money raised by Prop 63 is staying in State coffers to create a rainy-day fund. The remainder will go to counties, but only if they can show they will use it effectively. What could have been a flood of fresh funding is now a trickle.

Some counties are getting money and using it to set-up mental health programs to reduce homelessness and use of emergency medical care services, as well as ease the strain on the child welfare and justice systems. In LA County, some $70 million in Prop 63 funds has helped create drug treatment and counseling programs for adults and children, and increased services to help children leaving foster care. But county officials say freeing up more money would allow them to help a lot more people.

No one believes that more money by itself is the answer. The increased funds may pay for more services to help people with severe mental illness, but they will not always be enough to stop someone people sliding into crisis and slipping away from their families into homelessness, drug and substance abuse, and even occasionally violence. That's why people like Carla Jacobs say we still need to reform the law. "I saw my sister-in-law not too long ago and she said she knew about the work I was doing in reforming the LPS act and she said she wished it had been in place before her tragedy, because she says she has no quality of life, she has no civil rights, and she has no freedom"

Even in the medical community there is a big divide on when, or even whether forced treatment is ever appropriate. For Stanford's Dr. Ira Glick the most important element in the decision is not letting people relapse or slip away. "We err on the side of trying to get treatment early, we know that the longer you wait for treatment the worse your lifetime prognosis is going to be, the worse you do, so we lean early, on helping families to try get their loved ones into treatment, so that may mean involuntary hospitalizations."

The problem is who makes that decision and what do they base it on? If a physician or psychiatrist examines a patient and fails to see any immediate danger do they wait until they do see some signs, or is that waiting until it's too late.

For Dr. Sergio Aguillar Gaxiola, a Professor at Cal State Fresno, and the Chairman of the National Mental Health Association, the least restrictive option is always the best one. "I have a bias in this regard that it is better to treat them in the community rather than in institutions, because in institutions people add behaviors they did not have before."

The Institutions
One of the main reasons there is such vehement opposition to forced treatment is the nature of the facilities where treatment is delivered. In the past they were often grim, gloomy buildings where the main method of controlling patients was to medicate, and in some cases overmedicate them. Think of the way mental health facilities were portrayed in movies like "One Flew Over the Cuckoo's Nest" or "Snake Pit". Even if the picture is only partly true it is a very bleak one.

Today the reality is usually very different. On a crisp, spring morning I took a tour of the locked Behavioral Health Services unit at El Camino Hospital in Mountain View. It's a clean, comfortable, almost cozy facility with a patio for patients to sit out on, a garden to stroll around, and small individual rooms where patients can spend as much or as little time as they want. On the walls are brightly colored posters and paintings. There are also signs about the rights of mental health patients, reminding the staff, and the patients themselves, that they have the same legal protections under the Constitution as everyone else.

Michael Fitzgerald is the director of the unit. He says the first thing the staff do is try to ease the patients' fears they are going to be subjected to brutal treatment. "Probably the number one thing we can offer a patient is a safe place to be." Fitzgerald said. "That's why they are here, wherever they have come from it's not a safe situation or they wouldn't be in the hospital.

Fitzgerald, a smiling, affable man exudes a sense of calm as he walks around the unit. He says the average length of stay is about one week, just long enough for someone to get stabilized. But he says about 10 to 15 percent of patients are readmitted within 30 days either because there were no outside support services to help them continue their recovery, or because they didn't want to use them.

Fitzgerald says they try to educate patients about their disease, to help them understand what is going on. Staff at the unit also work with the patient's family, to get them involved in their recovery. The key he says is treating the patients with respect. "If we portray or treat them like they are criminals then it's going to be a very different outcome. So it's very important that we maintain their dignity and that goes a long way toward breaking down the stigma."

So what is the answer? Sally Zinman says she is in favor of helping people, but not if it means you have to lock them up to do it. She says we also need to start treating people with mental health problems the same way we treat people with physical disabilities, not as someone who is helpless but as someone who just needs a little assistance from time to time.

"The physically disabled community is way advanced compared to us." Zinman said. "People who are severely disabled live lives of choice and self-determination and independence but with us if you show signs of not being able to make decisions they make decisions for you. That should not be the first reaction."

Breaking the Stigma, Starting the Conversation
One thing everyone agrees on is the need to reduce stigma. The fear, ignorance, and myths surrounding mental illness often make it hard for people to get the help they need. Families are afraid to come forward in case they draw attention to a son or daughter they're embarrassed about. Individuals are afraid to ask for help because too many people still think of these conditions as a sign of personal weakness or lack of character. They say if you have a broken leg no one tells you to just get over it, but often that's the unspoken attitude towards people with mental health problems. Too many people still think they could "snap out of it" if they just tried hard enough.

Until there is greater awareness that these are diseases, every bit as real and debilitating as asthma or diabetes, then we are unlikely to provide the necessary treatments and support services needed to help those in need. While this mantle of shame continues to hang over mental illness people will be afraid to come out and get the treatment they need, families will be reluctant to ask for help for a loved one for fear of revealing their secret.

Patti Mars says one of the most important factors in helping her reach out for help was the support of the National Alliance for the Mentally Ill, or NAMI. NAMI is a nationwide support group for people with mental illness and their families, helping them understand what they are going through, and guiding them this new and frightening world.

Patti says NAMI helped her get Matthew into treatment, and as his condition improved, it was able to help him as well. "Having NAMI as an advocate really helped, saying you can get better, you can contribute, you can lead a good life."

Today Matthew's life is much better. After spending time in a locked-facility his health slowly improved. He graduated to a Board and Care home in the community where he was free to come and go, but always had a place to return to, a routine he could fall back on.

For Patti it's a remarkable turnaround from just a few years ago, but she knows they are not out of the woods yet, and may never be. "He still has the illness and he still fights the mood changes and has to take his medication, but he's working hard to manage the symptoms, to understand when things are going in a direction that could lead to a relapse. That's the lifelong management of the illness and it's going to be part of his life for the rest of his life.

"For Matthew, life has taken an ironic but hopeful twist. He is now working at the hospital where he was first locked-up, helping run the Wellness Recovery Program, working with people who are going through what he did when he first became ill.

"It's been 12 years since his first attack" says Patti Mars. "It's a long time, a long journey"

When it comes to forcible treatment of people with severe mental illness there are no easy answers. Most people recognize that there is a point beyond which people need help, whether they want it or not, whether they know it or not. But what that point is few people are able to agree on. It raises tough questions for which there are no obvious or easy answers, such as when does a society's need to protect itself take precedence over an individual's civil rights. When does medical judgement take priority over individual freedoms. When does a family's desire to help a loved one become more important than that individual's right to live their own life, no matter how flawed their reasoning or decision making.

The answers to these questions will only be found if we bring mental health out of the shadows and into the open. Only when we can talk about it frankly and knowledgably can we hope to have a conversation that does not consist of two groups shouting at each other across a void, but is a meeting of hearts, and minds, all working towards the same end.

In Their Own Words

Note: Video clips no longer available.
Patti Mars: Talks about her son Matthew's illness
Patti Mars: On the difficulty of getting treatment for her son Matthew
Carla Jacobs: Talks about how the existing mental health laws failed her sister-in-law
Sally Zinman: On myths about forced treatment
Sally Zinman: on why she think forced treatment fails to work
Helen Thompson: on using prisons as dumping grounds for people with severe mental illness
Prof. Ira Glick: on consequences of stopping taking medication for people with severe mental illness
Prof: Ira Glick: on decisions about forcibly treating people with severe mental illness
Prof. Terence Ketter: on rebounds and relapse after treatment
Prof. Sergio Aguillar Gaxiola: On stigma and shame
Michael Fitzgerald: on problems of treating people forcibly locked up in hospital

For more information about mental illness and mental health go to:

Used with permission from Kevin McCormack. Copyright 2007.