Fighting for the right to refuse treatment: Part 1

(Part 1):

Scott Starson has battled schizo-affective disorder for years. Two years ago, the Supreme Court ruled that he had the right to refuse drugs that doctors wanted to give him for his mental illness, turning him into a 'poster child' for the cause. Today, he is being treated, against his will, at the ROH's Brockville facility, still battling his disease -- and the people who want to help him.

It was good fun that Scott Schutzman had given his pet macaw, Mumbles, a room to itself in his Toronto penthouse. But when he claimed to communicate with the bird and stopped cleaning the floor under its perch, his friend, Frank Cianciotta, knew something was wrong.

What he didn't know was that it was severe mental illness. In the mid-1980s, bipolar disorder and schizophrenia were not household words.

Mr. Schutzman was successful and charming, a daredevil on the ski slopes, so handsome that he turned women's heads. He dressed so impeccably, Mr. Cianciotta recalls, that even his blue jeans were pressed. "You could put him in a wind tunnel and not a hair would move."

It was when Mr. Schutzman would show up at work unshowered, too dishevelled to see clients, that Mark Borkowski sensed trouble. Mr. Schutzman was the top salesman in North America for General Radio electronics and Mr. Borkowski was close behind.

"For the longest time we thought he was on some sort of drugs, he was such a live wire, constantly up, constantly sharp, a maniacally driven fireball," he said. When his hyperactivity veered to outbursts of shouting and inexplicable laughter, colleagues started to avoid him. Managers prized Mr. Schutzman's technical and sales talents so much, they looked the other way. It would be three years, Mr. Borkowski says, before "management started to realize what they had on their hands was somebody who was quite ill."

Twenty years later, Mr. Schutzman is more familiar as Scott Starson, his legal name since 1993, the dashing self-taught scientist who emerged as the poster child for the right to refuse anti-psychotic drugs. His refusal was upheld by the Supreme Court of Canada almost two years ago.

Today, he is a 49-year-old detainee at the Brockville Psychiatric Hospital, diagnosed with schizo-affective disorder, barred from release into the community for the seventh consecutive year on grounds he poses a risk to public safety.

One month ago, doctors injected him against his will -- but with his mother's permission -- with an anti-psychotic drug: they believed he was killing himself by refusing to eat and drink, a result of paranoid delusions and hallucinations.

The agonies of Mr. Starson, his family, friends, doctors and judges reflect the difficulties of balancing the conflicting values and rights set out in the Ontario Health Care Consent Act: personal autonomy, treatment of mental illness and protection of the public.

Over the years, he has claimed that he placed the last antenna on top of the CN Tower; that he will build a starship; that he married celebrities Joan Rivers and Joan Collins; and that he works -- from his hospital room where he has no computer and no phone -- in a worldwide network of scientists solving global problems. He has claimed to be the next head of NASA, the space agency.

For much of the last two decades, Mr. Starson has lived in a maze of jail cells and psychiatric institutions for an array of nuisance charges and for making death threats. It's been 20 years since he lost his job, his luxury apartment and the woman he loved, 20 years since his first admission to a psychiatric institution.

Mr. Cianciotta received an upsetting phone call. Mr. Starson, who was in a conference room with General Radio executives, came on the speaker phone. He addressed his friend as Capt. Kirk and asked him to issue mission orders.

It had been nine years since the two men graduated from the electronics program at Ryerson College where they used to play Star Trek on computers, with Mr. Starson as Mr. Spock and Mr. Cianciotta as Capt. Kirk.

"I think that was the first time he went really strange in public," Mr. Cianciotta says. "I told him, 'This is not a game, this is real life. Those people in the room with you are co-workers. This is your job.' I refused to play along."

Mr. Cianciotta returned to Toronto and went to Mr. Starson's apartment with Mr. Starson's worried brother Brad. "Things were just off." Mr. Starson was in his underwear. If Mumbles squawked, he would interpret and expect Mr. Cianciotta to reply. "I don't know why we called the police instead of a hospital," he said. "That's just what we did."

As they drove to the Clarke Institute of Psychiatry in a police cruiser, Mr. Cianciotta told his baffled buddy that it was a game. "All the way down there we're in the back seat and he's looking at me seriously and saying, 'Frank, I don't like this game. I want to stop. Let's stop it and get out.' I told him we had to finish the game."

For years, the memory of walking away while Mr. Starson cried out to him as he fought off a drug injection haunted Mr. Cianciotta, a high-tech sales consultant. "It was one of the hardest things I've done in my life," he says. "I felt so bad I can't tell you."

"He was saying 'Why are they doing this to me? Why are they putting me in this room? Frank, why are you leaving me here? I don't like this game.' He started thrashing and flailing and trying to run. And they were holding him down. They had him in a headlock and shoulder holds. That was the last I saw of him that time. It was heartbreaking.

Mr. Starson used to ask Mr. Cianciotta how he could have done it. In recent years, he'd just say, "'I never should have played that game with you Frank.'"

Jeanne Stevens didn't know it then, but a phone call she received at her Florida home in 1985 would foreshadow a 20-year nightmare in which she has seen her son drugged like a zombie, caged like an animal and, later, living medication-free in a delusional world in which he calls her "a parasite."

"Scott wanted to reassure me that, no matter what happens, he wanted me to know that he loved me," she says. The phone call was a marker of illness. "I think he knew what was going to happen to him, that he was no longer able to keep control of it."

It wasn't long afterward that Mr. Starson lost his job. "They fired him when he was at the hospital or the jail,

I don't remember which," says Mrs. Stevens. "Scott was absolutely devastated." He later bluffed his way into two other jobs, but they didn't last. His career was over. He was 29 years old.

Mrs. Stevens believes her son had been ill since his teens, possibly since birth. "I did not know what it was, but from the time he was about 16, 17, he started to change," she recalls. The once exceptionally loving boy would reduce her to tears by berating her with hypercritical comments.

"I couldn't do anything right," she recalls. "It was breaking my heart. I couldn't understand it." At college he complained of headaches and difficulty concentrating. "I never thought of mental illness," she says. "I mean, I don't think any parent does."

Divorced from her first husband and widowed by her second, Mrs. Stevens has waged a solo battle to stay on top of her son's illness and treatment. She has pushed for transfers from institutions where he was overmedicated or badly treated; intervened when she thought he was misdiagnosed; and for the last seven years, worked to secure the status of substitute decision-maker, which gives her the power to authorize drug treatment.

"He may not want to have anything to do with me now, but that's the illness speaking," says Mrs. Stevens. He has a very strong mind, a very strong will. And he's trying in his own way to conquer this. But that may never happen."

Since 1985, Mr. Starson has been in and out of 15 psychiatric institutions in Ontario, New York and Florida, all but one time by court order.

He was arrested between 1985 and 1998 at least 10 times for mischief, trespassing, harassing phone calls and disturbing the peace, and was charged a dozen times for making death threats.

His dazzling model looks are gone. A front tooth recently fell out and seven others, he says, are "in dire straits." His complexion is sallow. His clothes hang loosely on his bony frame.

He insists on the name Professor Starson, part of what his psychiatrist, Neil McFeeley, says is a "lonely, grandiose, delusional" world in which he believes he is a globally influential scientist.

He is in his seventh consecutive year of psychiatric detention since he was found not criminally responsible for threatening to kill fellow residents of a townhouse in Toronto in 1998.

On the way to jail, he threatened a police officer: "You don't know who you're dealing with. I'm with the Starsons. I'm going to kill you. You're f--king dead, dead, dead. I'm going to kill you. I've killed before. I've killed three people."

He legally changed his name to Starson because, his mother says, "he believes he is the son of the stars."

John Moffat, the eminent physicist often erroneously credited with giving Mr. Starson the "professor" title as an affectionate joke, says he was a nuisance who made him and other University of Toronto faculty nervous.

Mr. Starson has hounded celebrities, TV personalities and scientists. He has stayed at hotels without paying the bills. He has been subject to inquiries by FBI agents. His "extreme verbal aggression," as the doctors call it, has frightened many people.

His old friends and his mother cannot imagine him hurting a fly, but can see his threats provoking violence by others and can picture him being beaten or killed if he winds up on the street.

"Fundamentally, he has a kind heart," says longtime loyal friend Dennis Daoust, a Toronto commercial property lawyer who remains in phone contact with him.

Friend Ted Janiga, of Toronto, has said he is astonished that Mr. Starson has been in detention so long for making threats on which he never acted. "His sentence is way, way out of proportion," he says. "Society has dealt with murderers and rehabilitated all kinds of people. Why don't they do it for Scott?"

That's exactly what they would like to do. But they say that requires drug treatment. Until a month ago, when he was forced on medication, Mr. Starson has refused. He calls them killer drugs.

Schizo-affective disorder is treatable with medication, says Dr. John Bradford, chief forensic psychiatrist for the Royal Ottawa Health Care Group. The illness can go 80 to 90 per cent into remission. However, "the longer they're ill, the longer it takes." It may take a year, even two, if he stays on medication.

Schizo-affective disorder includes symptoms of bipolar disorder and schizophrenia. Mr. Starson's symptoms are grandiose delusions, paranoia, extreme ambivalence and command hallucinations. His behaviour is described as intimidating, threatening and abusive. Doctors say he gets depressed and talks of suicide.

His younger brother, Brad, long ago severed ties so that he could get on with his own life. While Dennis Daoust has stayed in touch, and says Mr. Starson is "much more cogent" now that he is on medication, Mark Borkowski stopped taking his calls in 1988.

Mr. Cianciotta, who used to tell Mr. Starson that medication is "the price you have to pay," changed his phone number about two years ago to stop his calls. "My life just moved on."

Mr. Starson's detention began in August 1998 at the Toronto Centre for Addiction and Mental Health. After threats to staff, he was transferred in 2000 to maximum security at Penetanguishene, where he was temporarily subdued with "chemical restraints" and given nothing but a crayon with which to write.

In March 2003, he was transferred to the medium-security wards of the Royal Ottawa Hospital facilities, first in Ottawa, and since September 2003, in Brockville. This was a less restrictive setting. His mother's hopes soared. Maybe the medical team could establish a rapport and get him on medication.

Instead, the ROH found it had the poster child for the right to refuse psychiatric drugs on their hands.

Although Mr. Starson was ordered detained for one year, he is still locked up; that year has been extended annually by the Ontario Review Board on grounds his release would pose a significant risk to public safety.

Dr. Bradford says risk of physical violence by people with untreated schizo-affective disorder are six to seven times higher than in the general population, and even greater if the ill person consumes alcohol or street drugs. Mr. Starson threatened Dr. Bradford when he was refused cannabis.

Dr. Bradford believes that when Mr. Starson is well, he is a kind, gentle, caring person with social rapport. But he cautions: "If you threaten to kill somebody, that's actually taken very seriously in our society, and if you have an illness that makes it more likely that it will happen."

The last Ontario Review Board hearing, two weeks ago, was adjourned until Aug. 17 to give a lawyer, called on short notice, time to prepare. Mr. Starson attended the hearing in a brown pinstriped suit, carrying a briefcase of documents, including letters to the board from two friends who will testify in August that Mr. Starson is kind, not dangerous, and needs some liberty.

One friend is Mr. Daoust, who says it's clear drugs are benefiting his friend. "He sounds like his old self." The other is Geoffrey Hunter, a retired York University chemistry professor who encouraged Mr. Starson's interest in science in the mid-1980s, and says he is prepared to serve as a contact for him if he's released.

That infuriates Mrs. Stevens, who wants her son to recover before he is released. "Those guys haven't seen him since 1998," she said. "What the hell do they know?"

Psychiatrists began treating him with a drug in mid-May, for the first time since he was locked up.

Mr. Starson had successfully asserted his right to refuse drugs in the Supreme Court two years ago. A 1999 decision by the Consent and Capacity Board that he was incapable of deciding treatment was struck down by the court.

But last February, Brockville doctors said they could no longer stand by and watch him waste away. He had refused most hospital food and fluids for months. They went back to the Consent and Capacity Board and got a new ruling that he was incapable. When a court dismissed Mr. Starson's appeal of that in May, the doctors injected him.

Dr. McFeeley had brought meals from Swiss Chalet to get him to eat. He says Mr. Starson, obeying auditory hallucinations warning him not to co-operate, was convinced the hospital was trying to poison him. He became a 118-pound ghost of his former, bulky six-foot-one self, so frail that he could not walk far before he had to stop. His entire body reeked.

Two years ago, Mr. Starson was hailed by patients-rights activists as a champion against involuntary treatment. He was portrayed as a brilliant scientist whose genius had been saved by the Supreme Court from the dulling effects of psychotropic drugs.

Some of his old friends barely recognized this heroic picture of the guy who pestered them by phone from prisons and hospitals with requests to order fast food sent in. He turned up sometimes, discharged from an institution, overdrugged and complaining of side-effects.

Mr. Janiga was among those who say Mr. Starson is smart, but no genius, and who were astonished to see him likened in the media to John Nash, the Nobel-winning mathematician whose struggle with schizophrenia was portrayed in the movie A Beautiful Mind.

So was Mr. Moffat. Those who make that analogy "are doing Nash a disservice," he said. Mr. Nash was well-established as a brilliant mathematician before symptoms of illness showed. He had a PhD from Princeton, a position at the Massachusetts Institute of Technology and was credited with significant work.

Mr. Starson, by contrast, was untrained in physics, but had read enough literature to know the buzzwords. He had published a paper with Stanford University physicist Pierre Noyes, who Mr. Moffat says did solid work in the 1960s, but had long since drifted to the fringes of science.

Mr. Moffat regarded Mr. Starson as one of the disturbing people with whom he had an unwanted association in the 1980s and 1990s.

"We get a fair amount of people coming in and wanting to talk to us about their latest theory," he said. "You have to deal with it. You can't just tell them to go away; it is not the policy of the university, which is a gathering place of ideas."

Mr. Noyes says he was impressed with some of Mr. Starson's observations and incorporated one -- not a new idea but an interesting argument -- into one of his own papers on anti-gravity. "I thought it was only fair to put his name on the paper," he said.

"He had some far-out ideas but he was always very rational in talking about them," Mr. Noyes added. "He has talked about being in contact with aliens. I'm enough of a believer in the proposition that aliens should be here already that they might be in contact with him, for all I know. It's a long shot, sure, but I'm not going to rule it out."

The opinion of Mr. Noyes and others that Mr. Starson is a brilliant scientist was passed along from one judicial body to another in Canada. So were doctors' warnings that he needed medication and whatever genius he had was lost in a psychotic world.

The Supreme Court's job was to decide only one issue: whether the Ontario Consent and Capacity Board had properly deemed Mr. Starson incapable of making a treatment decision in 1999, four years earlier. The board decision had authorized psychiatrists to go ahead with drugs that Mr. Starson had refused on grounds they slowed down his brain and prevented his scientific work -- a fate he described as "worse than death." Their proposal to treat his then-diagnosis of bipolar affective disorder included anti-psychotic medication, mood stabilizers, anti-anxiety medication and anti-Parkinson's drugs.

Aided by lawyer Anita Szigeti, a strong advocate of patients' rights, Mr. Starson had duked it out with the Ontario government, winning in the Ontario Superior Court in 1999 and in the Ontario Court of Appeal in 2001.

Dreading a Supreme Court decision that would make it difficult to treat his new patient, Dr. Bradford weighed in at the 11th hour, on the eve of the June 6, 2003, ruling by the top court: "I hope the Supreme Court in its wisdom will look not only at the issue of the right to refuse treatment, but the right to treatment. There is tremendous suffering. To pretend that a person is a 'happy psychotic' simply doesn't make sense."

(Continued on next page)

Special Report - Treating the Mentally Ill. Ran with factbox "Scott Starson's story", which has been appended to the story.


Juliet O'Neill and Doug Fischer
The Ottawa Citizen