Patients' rights frustrate families

The Globe and Mail

March 12, 2009

The trial of Vince Li, the so-called "Greyhound bus killer," garnered a lot of media attention. There is no need to rehash the gruesome details. But let's linger on one aspect of the case, because much was made of the fact that Mr. Li suffers from a severe mental illness, schizophrenia.

This is the story of someone else who suffers from schizophrenia. His name is Matt. Like most schizophrenics, he has never harmed anyone physically - except himself.

But he and his illness have caused his family and friends untold pain - a pain made more searing by the coverage of Mr. Li's trial. The descriptions of him as "psycho," a "sicko," a "nutcase" and so on hurt profoundly; so, too, did the focus on Mr. Li's "crazy" symptoms and the lack of attention paid to the fact that he was untreated for a treatable condition.

"Nobody deserves to die like that young man on the bus. But seeing the way schizophrenia was reported made me sick," said Steve, Matt's father.

They have a last name, but have asked that it not be used. There is a lot of stigma surrounding mental illness, and vilification of the mentally ill. "I'm self-employed and I can't afford having people think of me as the father of a 'freak.' That's the sad reality," Steve says. But, at the same time, Steve wants the public to see another side of schizophrenia, one that will never be front-page news.

It is a story of frustration with Canada's patchwork mental-health system, one in which care is not available until there is a crisis. It is the story of the devastated family of the person with schizophrenia. It is a story of anger with a legal system that gives people with severe mental illness the right to refuse treatment, and affords families no right to help their loved ones get well.

The family has lost count of how many times Matt, who is only 20, has attempted suicide, how many times he has overdosed. Matt will ingest any drug he can get his hands on, from NyQuil to ecstasy. When he does, the demons that haunt him recede into the shadows for a while. Like many people with severe, untreated mental illness, Matt has an ever-lengthening criminal record, most of it related to shoplifting over-the-counter drugs at pharmacies and public intoxication.

He spends nearly as much time in prison as he does in hospital - essentially jailed for being ill.

Who could have imagined it would come to this?

At one time, Matt lived a comfortable middle-class existence in suburban Toronto. He was a star athlete, a gifted musician, an army cadet, a popular classmate. But things began to unravel in high school. He became withdrawn. Smoked and drank and did drugs with a little more gusto than his peers. Began acting weird. Dropped out of school. At first, it was dismissed as the growing pains of adolescence, but his behaviour soon spiralled out of control.

Matt bounced around various group homes and court diversion programs. The stress and frustration were such that his parents' marriage almost collapsed.

Then the diagnosis came - schizophrenia.

"Finding an explanation for his behaviour was a relief," Steve says. After all, parents tend to blame themselves. "But then you find out what it really means - a mind-altering disease destroying a person you love - and it's heartbreaking," Steve says.

Trying to get his son the care he needed was more heartbreaking still. The wait to get Matt into a psychiatric bed in the region of Ontario where he lives was 12 weeks or more. He bounced from crisis to crisis. When there was a glimmer of hope and the young man was willing to be treated, care was not available.

After a suicide attempt, Matt was treated in the emergency room then sent home. Not because he didn't need help, but because all the hospital's psychiatric beds were full. Matt has now deteriorated to the point where he is hospitalized against his will; he has been committed, or "formed" as they say in the jargon of the milieu.

But he can still refuse treatment and he can still wander away from hospital to shoplift and get high. "He has lost the capacity to make rational decisions, but he still has the legal right to make those decisions," Steve says. He is exasperated by this paradox, as are many parents of adult children with severe mental illness.

"In the end, all I want is my son back," Steve says mournfully.

He has nothing but praise for the health professionals who have cared for his son. The nurses and doctors, he says, have been phenomenal. So are the volunteers and staff from the Canadian Mental Health Association.

"But their hands are tied by consent forms and legal nonsense," Steve says. "The Charter of Rights and the Mental Health Act give my son the right to be sick.

"Vince Li, too, had the right to be sick, the right to be guided by psychotic visions, the right to refuse treatment. In that case, the tragic consequence was the senseless death of Tim McLean on a Greyhound bus.

Two more victims of untreated schizophrenia, of a mental-health system with screwed-up priorities. But there are many more victims of untreated mental illness, of a profoundly flawed system.

Far from the headlines, they are dying deaths by a thousand cuts, deaths by a thousand pills, deaths by a thousand missed opportunities to treat.