Shattered bodies, left alone

>> Despite a massive overhaul, the Public Curator's office, charged with caring for the severely disabled, is still facing charges of indifference, sloppiness and negligence

by KRISTIAN GRAVENOR

Life was a lot less difficult and less lonely for 36-year-old Michael--to use his pseudonym--before he lost control of his car six years ago. Nobody knows exactly what happened that night and the one-time party animal can't tell anybody about it but the results are clear. On that ill-fated night of smashed steel Michael suffered serious head injury and fell into a coma. When he came to, he found himself robbed of control over most of his body. Today he can no longer walk, use his hands or communicate; his days, from incontinental breakfast to fall of night, are spent perched atop his wheels of steel at the Notre Dame de la Merci Hospital across from the Bordeaux prison on Gouin.

Michael--like many of Quebec's 45,000 extremely handicapped citizens--remains totally dependent on hospital staff charged with such tasks as changing his diapers, bathing and feeding him. Although his mum visits him occasionally, his true parents are the Public Curator of Quebec, the oft-tarred provincial government bureaucracy that directly controls the financial, legal and medical affairs of 13,000 Quebecers--along with their $300-millions in financial assets--who are deemed unfit to manage their own lives.

Kindness of strangers

Four years ago Michael's daily routine took a twist when he met Michel Gervais, a 57-year-old high school morals teacher who had been visiting the hospital frequently to visit his ailing mother. "I'd make him food, I'd walk him around, I did certain efforts to try to bring him to speak," says Gervais. Eventually, according to Gervais, the efforts were rewarded when Michael was able to mouth a few basic words. "It was just a few things that he knew before his accident, not enough to have a conversation. But it was encouraging."

But with time, Gervais became aware that his paraplegic protégé was suffering unnecessarily. "I noticed that he had bad acne-type spots on his back and the staff wasn't doing anything about it. I complained and then they gave him antibiotics and it went away. I noticed he seemed to have an itchy scalp that he wanted scratched. I got them to wash his hair more often and they did for a while but then stopped and his problem returned."

Gervais says that Michael, who was physically unable to communicate any complaint, had developed infections between his fingers that he was unable to keep apart. Gervais cajoled the hospital staff and provincial bureaucrats to address this, as well as another unpleasant aspect of severely disabled life. "I sometimes noticed his diaper was so full of urine that his pants were wet," says Gervais. "I had to make sure that they kept on top of changing him regularly."

He says there were other signs of neglect. "When the hospital staff fed him, he'd stop eating. It wasn't his fault, it was probably a brain problem. He'd just stop chewing and start again 20 minutes later. The employees said, 'We don't have time to waste with you,' and took off with his food. Myself, I'd take an hour or more to make sure he ate his whole plate."

Troublesome friends

Initially Gervais' complaints jarred the Curator to improve Michael's plight, but the strategy suffered the law of diminishing returns. With time, Gervais' battle against indifferent care for his helpless friend became like that of Hercules against the Hydra: for every problem he beheaded, it seemed two would immediately pop up in its place. After his relations between hospital staff became increasingly fractious, one day the hospital handed Gervais a letter from the Quebec Public Curator. Michael, it said, no longer wanted Gervais to visit him. Gervais remains dubious, as he asserts that when Michael was asked in front of him and staff whether Michael wanted the visits to continue, he nodded yes.

Not only was Gervais barred from visiting, but the hospital chief Michel Bouffard labelled him an "obsessive compulsive" in a TV interview. This summer Gervais won $12,000 for the defamation, a decision that Bouffard has brought to Appeals Court. Gervais still sees his old handicapped pal on Sundays when they cross paths at the hospital chapel, where he says Michael smiles at him from afar. "It's sad," says Gervais. "There are fundamental rights for a human being, even one who can't speak or defend himself. He's a victim. For those who don't have frequent visits of parents or friends, these people are at the mercy of the hospital staff."

Expensive negligence

Michael's plight is the sort of story Hélène Rumak and Johanne Ravenda hear regularly as heads of advocacy group Disability-Life-Dignity, which fights for the rights of individuals under the tutelage of the Public Curator. "The people in institutions under the protection of the Curator are completely abandoned," Rumak says. "They have no rights that they can use to defend themselves. They're the worst off in our society because they're very vulnerable. Many are mentally halted, many are elderly, they're stuck in institutions and their only signification relationship is with the Curator but he has no time to check on these people," she says.

Although stuck in his solitude, Michael is far from alone as an example of the continuing failures of the Public Curatorship, says Rumak. In spite of a high-profile and costly rehaul, Rumak still gives the Curator failing marks. "It's a continuation of the same crisis," says Rumak, a retired schoolteacher. "The system has never been repaired. Deep down, as far as the vulnerable people are concerned, nothing has been done."

The Curator's bad reputation sprang from a bombshell report dropped four years ago by then-ombudsman Daniel Jacoby, who exposed every conceivable type of mismanagement at the Curatorship. One of the problems was that the Curator's office was so undermanned that each agent had an average of three hours to spend per year on each of the people under their control.

In response to the Ombudsman's 43 recommendations, the Curator's office spent millions buying peace with complainants. Its budget was doubled to $35-million and its staff grew to 500, with 150 more employees hired.

In spite of the fanfare, Ura Greenbaum, of the Association for the Defense of People and Property Under Public Curatorship, also believes that the Curator still hasn't shaped up. He points out that the leadership has become a revolving door as four chiefs have come and gone since 1997. Greenbaum has also circulated a recent letter from the Ombudsman that suggests that the Curator is being scrutinized anew for possible and unspecified misconduct. He notes that the level of complaints against the Curator that have been deemed justified is back above the earlier levels from the bad days of mismanagement.

Questions, no answers

At the root of the problems, according to the Curator watchdogs, is the bureaucrats' practice of routinely ignoring requests for information on the grounds of confidentiality. Media efforts to obtain answers have also hit the same fortress of silence as the Curator refuses to discuss personal dossiers of individuals under its control. Spokesman Pierre Venue would only concede to the Mirror that the Public Curator is in "the process of reform."

But Rumak says that nosiness is required to help the helpless. "They might think that it's okay for us to butt out but it's not okay for the person who's been abandoned. These people have nobody to turn to but their institution. But what happens when you can't tell anybody that you're being left all day in bed, if you can't say that you're not being bathed at least once a day or eating properly because you're weak or mentally challenged?"

Among the many horror stories from the earlier days of the Curator is that its agents would rubberstamp 10 medical procedures a day, even though every affected individual theoretically had the right to veto any operation. The bureaucrats are still playing God, according to Rumak, who claims that passive euthanasia remains standard for many under Curatorship. Patients without relatives around to pester doctors will often receive what's called "comfort care," what Rumak describes as "effective euthanasia." In one recent example, Rumak intervened on behalf of someone whose longtime girlfriend, under Curatorship, was being left for dead rather than be treated for pneumonia.

In other cases, says Rumak, the Curator's children suffer neglect because the bureaucrats can't motivate hospital staffers to do the little things. "With some patients they won't even put them in a wheelchair for a part of the day. They say, 'We don't have the staff to put her in a wheelchair and it's not worth it anyway, she's like a vegetable and it doesn't make any difference whether they're even sitting in a wheelchair or lying in a bed.' At least that's what they try to convince themselves," says Rumak. As a result, the suffering increases. "The hospital workers understand each other well but the patient is neglected and forgotten. That's the person who is most vulnerable and can't speak out and when we come to intervene, they say, 'Why don't you mind your own business?'"