Our 34-year-old daughter is a bright, perceptive human being with a particular affinity for the downtrodden of the world. She is also destroying her life and is at very real risk of losing her job, apartment and ending up in a shelter or on the streets. She is one of the many people in Canada who suffer from a severe mental illness.
I still remember the first time in 2020 that I experienced one of her psychotic episodes. It was on a Saturday morning in the parking lot of a supermarket where I had taken her to pick up groceries. She silently motioned me to get out of the car and then quickly became hysterical. She claimed a work colleague was tracking her every move and that her life was in immediate danger. She was truly terrified and nothing I said could allay her fears. Little did I know at that moment that my wife and I were about to embark on a heart breaking journey that continues to this day.
Since that awful moment, my wife and I have become our daughter’s chief caregivers and advocates and are doing everything we can to save her from herself. Tragically, it is a battle we are fighting with one hand tied behind our back.
For the last four years, we have been on a steep learning curve about mental illness care here in Ontario and our most shocking discovery is that we have virtually no rights when it comes to helping our daughter. Her right to patient-doctor confidentiality and employer-employee privacy are Everest-high obstacles that trump all other rights.
The challenge is made more complex by the fact that she suffers from anosognosia, a medical term meaning the patient has no insight into their psychiatric condition. In short, many people in psychosis think they are well when, in fact, they are severely ill. According to the Treatment Advocacy Center, at least one in five people with severe mental illness suffer from this condition and it is the leading cause of non-adherence to treatment for those suffering from schizophrenia spectrum disorders.
The only tool available to us, and it’s a nuclear option, is a Form 2 under the Ontario Mental Health Act. This is where a concerned family member goes before a Justice of the Peace with evidence that the ill individual is having a psychotic episode and is a danger to her/himself or to others. If approved, the Form 2 gives the police the authority to take the individual into custody and transport them to a hospital for treatment, psychiatric assessment and usually a short-term stay. We have done three Form 2s for our daughter since November 2023, the latest being in March 2024.
And it is at the entrance to hospital that our frustration and heartbreak begins. As privacy legislation now stands, hospital psychiatrists, nurses and social workers cannot discuss any aspect of our daughter’s case with us without her permission. And given her illness, that permission is not forthcoming. This means we have no insight into any diagnosis or antipsychotic medication or treatment she may be receiving thereby hamstringing any help and support we might provide on her release from hospital.
Likewise with her workplace. When we learned our daughter had simply stopped going to work in late January, we contacted her employer to try and put her on long-term disability—a right she is entitled to—but they refused to discuss her case citing employer-employee confidentiality.
We understand the argument for protecting an individual’s rights. In the bad old days unscrupulous professionals or family members could have an individual suffering ‘mental distress’ certified and locked away with relative ease. But that is no longer the case. Many of the psychologists, psychiatrists and mental health organizations we’ve met over the last three years believe the pendulum has swung too far. There is also a solid body of evidence proving that family involvement in treatment results in better outcomes for mentally ill individuals. But as it now stands, we are protecting the rights of the mentally ill even when it is causing them harm. And this is not just an Ontario issue. It is a national issue.
Our mental health system is under stress as never before with lack of funding, the opioid crisis, housing shortage and lack of family doctors having a disproportionate negative impact on the mentally ill. A change to current provincial privacy legislation to allow the sharing with caregivers of both personal health and employment information of loved ones suffering from psychiatric disorders would be one small but important step to help redress the balance. This, coupled with better education of both families and mental health professionals, could reduce costs, foster improved ‘care in the community’ and, most important of all, give people suffering from mental illness a fighting chance to find a degree of stability and happiness in their lives.
Until this change happens, we, and many other Canadian parents like us, are trapped in an endless revolving door where our children’s mental health grows progressively worse and our only right is the right to pick up the pieces as best we can each time their world falls apart.
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