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Freedom to be sick leaves families feeling chained

Caregivers who can't get mentally ill loved ones to seek help grapple with laws designed to protect civil rights

From Friday's Globe and Mail

Mary Liz Greene was in the midst of an animated conversation with her son when he suddenly lunged, grabbed her by the neck with two hands, then pushed his thumbs into the soft flesh of her throat, using the full force of his 6-foot, 200-pound frame.

Gasping for air, she felt the pressure let up for an instant, shoved him with all her might and fled to a neighbouring apartment to call 911.

“I'm lucky to be alive,” Ms. Greene said later, “although sometimes I doubt that.”

Her son, 24-year-old John Candow, suffers from severe bipolar disorder and, when untreated, is consumed by the delusion that he is Tony Soprano, the TV mobster. He has been living with his mother and, since he was diagnosed three years ago, has thrown knives at her, burned her with cigarettes, punched and kicked her repeatedly.

Last week's incident was the most violent yet. When police arrived, they were confronted with a psychotic young man holding a knife to his throat threatening suicide. They tasered, subdued and arrested him – and found 10 more knives in his knapsack.

When Ms. Greene, a Halifax social worker, visited her son at the East Coast Forensic Hospital a few days later, he reminded her, matter-of-factly, that he plans to kill her and chop her body to pieces.

“When John's not sick, when he's being treated, he's very loving. He's a sweet, beautiful boy,” Ms. Greene says tearfully.

But the central fact of the sordid tale is this: Mr. Candow refuses to get treatment, as is his right under Canadian law.

That right presents a dilemma for countless caregivers across the country whose loved ones have such severe mental illnesses as schizophrenia, bipolar disorder and addictions, especially when they also suffer from anosognosia – an inability to recognize they are sick.

Mental-health services are in short supply, even for those who want care. But for those who refuse treatment, the situation can be dire and deadly. Many end up caught in the revolving door of the criminal justice system, their health – mental and physical – spiralling downward.

Vani Jain, manager of policy and community relations at the Schizophrenia Society of Ontario, which runs the innovative Justice and Mental Health Program to support parents, says: “The No. 1 question we get here is, ‘How do I get help for my loved one who doesn't want it?' ”

There is no easy answer to that question, which pits people's civil rights against their health and the safety of others.

John Gray, a psychologist and co-author of the legal text Canadian Mental Health Law and Policy, says that, decades ago, people with mental-health problems were hospitalized indiscriminately and often treated in a horrific fashion.

As the Dickensian institutions were shut down, the pendulum swung to a point where civil rights ruled and involuntary hospitalization and treatment were next to impossible. Only those who posed an imminent danger to others could be held and treated, and an army of untreated people took to the streets and soon found themselves sleeping on cold slabs in prison. “The fundamental problem is that we've deinstitutionalized the mental-health system, but we haven't deinstitutionalized mental-health law,” Mr. Gray says.

In his view, British Columbia has the country's best mental-health legislation because it balances the rights and needs of people with severe psychiatric problems, and heeds the interests of families. People can be hospitalized involuntarily if they pose a danger to themselves or others – the traditional criteria – but also if their mental health risks deteriorating markedly without care.

“The purpose of the B.C. law is to treat people who are sick, not punish them,” Mr. Gray says. “That's what you want.”

At the other end of the spectrum, he says, is Ontario, where it can be difficult to commit and treat people, even if they are very sick. (On the upside, Ontario has innovated with mental-health courts, which fast-track people to care instead of jail.)

There are about 60,000 admissions a year for involuntarily psychiatric care in Canada, and that doesn't include those in the criminal justice system, Mr. Gray's research shows. But over all, he says, “This is a civil-rights country. There are a lot of legal protections.”

For example, in most jurisdictions a review board must convene within seven to 14 days of a person being committed, and the onus is on the hospital to prove the person meets the criteria set out in the law. Health professionals must show that a person suffers from a mental disorder, is at risk of harming himself or others, has a condition that is deteriorating and is in need of psychiatric treatment. Even then, a person can refuse treatment, while remaining in care.

In fact, Mr. Gray says, the law is reasonable in much of the country. A larger problem is that health professionals “cling to old notions. They think someone can only be committed if they are a physical danger to others. In short, health professionals don't know the law.” Even when they do, Mr. Gray adds, there are issues such as severe bed shortages and an unwillingness to engage in legal battles with activists that make them reluctant to commit a patient.

Constance McKnight, executive director of the National Network for Mental Health, says lack of resources is the underlying reason so many people with mental illness are caught up in the criminal justice system. There are about 6,000 psychiatric beds in Canada, down from a high of 60,000 half a century ago. This massive deinstitutionalization was supposed to include a shift of resources to the community – which didn't happen.

“We can't talk about the criminalization of the mentally ill without talking about the failure of governments to reinvest in community mental health,” she says.

Ms. McKnight says adequate investment in community supports and a commitment to a “recovery model” would eliminate the need to dump people in jails and make it unnecessary to resort to involuntary commitment and forced treatment. “Why would society even consider something as barbaric as forcing people to take medication?” she says. “Why would we force someone to take a medication that has side effects that are worse than the symptoms? Why do we continue to believe that medication is the only option?”

Ms. Jain of the Schizophrenia Society of Ontario says she understands the theoretical arguments against forced treatment, but sees the practical effects of leaving people untreated. “It's a difficult situation legally. If you take a few rights away, it can snowball, and that wouldn't be good. But families say: ‘Okay, my loved one has a right to refuse treatment, but why isn't the right to be healthy in the mix?' ”

She says families can't understand how people with obvious mental illnesses are deemed fit to stand trial and considered rational enough to consent to treatment or not. “One of my clients thinks he's Elvis Presley and he has the final say on treatment decisions,” she says. “That's hard for his family to accept.”

Mr. Candow's downward slide has been a heartbreak for his family, too. Once a gifted musician and brilliant student, he is now refused treatment at the local psychiatric hospital because he assaulted a doctor. He was evicted from mental-health housing, again because of violence. He is on probation and has a community treatment order, both of which oblige him to take medication or return to jail, but the conditions are not enforced.

The severity of the most recent attack on his mother means Mr. Candow is likely headed for jail. The best he can hope for is to be deemed “not criminally responsible” and sent to forensic hospital.

“I pray that he'll be NCR,” Ms. Greene says. She fears that in jail he would be abused and his condition would deteriorate. “But what has life come to,” she says, “when you pray that your child will be sent to an institution for the criminally insane?”

Maria Flores, an Ottawa artist, despairs at her inability to get care for her son. At age 30, Diego has already been convicted at least 50 times on criminal charges, most related to shoplifting and petty theft, and is now in prison.

“He's the world's worst robber: Gets caught every time,” Ms. Flores says sardonically. He steals compulsively because of mental illness – a severe personality disorder – and to pay for his drug addiction.

Diego's mental-health problems first arose in childhood. By age eight, he was unmanageable at home. By 15, he drank heavily and soon progressed to street drugs. Then came adulthood and the revolving door of incarceration and freedom.

But freedom, Ms. Flores says, is a relative term. When he is out of jail – rarely for more than a few weeks at a time – her son lives on the Ottawa streets, consuming drugs and stealing to feed the addiction. On occasion, she has walked near the downtown Rideau Centre and spotted him passed out on the sidewalk, drugged and filthy. “I stand there and I hear the awful comments people make,” she says. “Nobody ever thinks: that's somebody's son, somebody's sick child.”

Diego has been hospitalized a number of times for treatment of drug overdoses, but he has never been treated for addiction or his underlying mental illness. Occasionally, when he has reached out for help, programs have been full and the window of opportunity slammed shut.

“When my son is thinking straight, he knows that he needs treatment, he wants treatment,” Ms. Flores says.

While the idea makes her a bit uncomfortable, she has become increasingly convinced that Diego needs to be forced into treatment. “I think it's horrible to infringe on someone's rights, but sometimes it's more horrible to not infringe on their rights,” she says.

Given his history, Diego's “likelihood of re-offending and returning to prison is 100 per cent guaranteed,” and she knows that the constant cycle of prison and the streets is taking a toll on his health.

“I know it's a horrible thing for a mother to say but I'm not looking forward to the day of his release – unfortunately,” Ms. Flores says. “I'm afraid to think of the future. All I do is pray, pray, pray.”

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