Guest Post – Ontario’s Flawed Mental Health Legislation Reversed Psychiatric Progress

By a member of  Mothers for Mental Health Care Reform

I am keeping my identity and the identity of my family member (FM) secret to protect my family member’s privacy.

My FM has schizophrenia but was doing quite well on a Community Treatment Order (CTO), although they had no insight into the illness. This lack of insight or anosognosia is a symptom present in 50% to 80% of all persons with schizophrenia. It is also common in dementia, structural brain damage and stroke. According to McNally K, it may be one of the most important symptoms. He said “When Eugen Bleuler categorized the core symptoms of schizophrenia as the four “A’s”—alogia, autism, ambivalence, and affect blunting, he may have missed one of the most important “A’s” of all— anosognosia” It is complex and antagonistic to the notion of recovery. In spite of its importance, it goes largely ignored. There is no cure and no medications to specifically treat it. Most of our homeless have reached their unfortunate state because they suffer from it. They have no insight, they do not believe they have an illness and because of their brain deficiencies cannot connect the dots in order to rationalize taking medication. My family member sadly falls into this category.

My FM was doing well with the CTO and was being supervised by an assertive community team (or ACT). So well, in fact, that they were starting a new job. Believing that the medication would interfere with performance on the job, my FM requested to have the medication discontinued. As substitute decision maker (SDM), I refused to give permission to discontinue the much needed medication so they called upon a legal aid lawyer, paid for by the taxpayers of Ontario, who helped appoint a Power of Attorney (POA) to override my SDM status.

The psychiatrist challenged that and even received supporting advice from his hospital’s external lawyers but the Consent and Capacity Board which hears challenges to CTO’s when the patient objects allowed the POA appointment to go ahead. This was accomplished without our family knowing who was made responsible for the care of our family member and months later we still do not know. Privacy laws prevented the psychiatrist from sharing the information. The psychiatrist subsequently discharged our family member when they refused further treatment.

It is unfathomable that a trained psychiatrist can determine that his patient, who is well known to him, needs medication long term yet, when contested, a lawyer who barely knows the client can argue that the patient is well enough to make a decision to stop the very thing that will save their life.

Part two of the definition of capacity is to probe into whether the person truly understands the consequences of refusing medication but their history does not seem to play a role. When contesting a CTO, for example, the patient may appear to have improved in some respects but is still ravaged by anosognosia. The legal process often “fails” the patient at this point, finding them “capable” and hence removing them from a CTO and subsequently from treatment. Can a patient suffering from anosognosia and contesting a CTO even know that a few months down the road their voices may instruct them to run away to escape their symptoms, jump out of a car at a major intersection, stop eating or become angry at life and pull out a knife to name a few of the bizarre and dangerous behaviours and beliefs?

I cannot emphasize enough that it is so essential to have family involved to describe the realities, the patterns of behaviour and need for continued medication.

For my family member, their latest job which was such an achievement is now a thing of the past, friends have disappeared again and family members already distanced will continue to exclude. Money has become a problem once more. “I am not disabled, I will not apply for disability funding”. It all requires their signature.

I was speechless when the defence lawyer suggested I consider “that this is how my family member may want to live their life.” What lack of understanding! Am I supposed to believe that that my family member with a masters degree and expectations of a career and family will choose to lose the job they loved that they acquired after 4 interviews, will relish losing friends, family and relationships, will look forward to living on the streets and will chose to avoid parents because they are considered “part of the conspiracy”? This is what happens to our family member as medication leaves their system time and time again. As any psychiatrist will attest, they cannot guarantee improvement next time. It gets harder and harder to pick up where they left off due to prolonged psychosis and further brain damage.

Several months later, our family member’s psychiatric state had deteriorated exactly as has happened in the past. The good job was lost 3-4 months after winning the challenge to the CTO renewal and ceasing medication. This is the pattern we have seen in the past and is very predictable. Lawyers and psychiatrists are not beyond understanding this. And our laws or the interpretation of them allow it to happen. There is no requirement or even an opportunity for the doctor to re-assess our family member’s condition and there is no doctor now responsible for their care. All the worthwhile efforts of doctors and hospital have been wasted to say nothing of the valuable years of career and social life “lost” for our family member. Each time, I am tempted to call the ex-employer to explain the dramatic behaviour change and cognitive decline but I do not. I need to protect our adult child. Will there be a next time? Not as long as the unknown POA shakes his or her head at medication while our child sinks deeper into psychosis and remains unaware of their illness.

People with schizophrenia and anosognosia are seriously ill people, who need ongoing treatment like anyone suffering from other potentially fatal, chronic conditions such as heart disease, diabetes or high blood pressure. But these patients are not usually suffering from anosognosia and are able to weigh the true pros and cons of prescribed treatments.

Families believe the legislation goes too far in considering patients’ rights to the detriment of many it was supposed to protect. Our elected officials should be ashamed they have allowed these injustices to continue for years. It is about time revisions to the mental health legislation takes place with priority given to anosognosia for what it is, a neurological condition. And with input taken seriously from family members.

However, if the people with power to revise the legislation are waiting for better medication and treatment so they can avoid the difficulty of the work involved, it may be a very long wait. Research is costly and while I would like to be wrong here, there appears to be little in the way of revolutionary treatments on the horizon.

By doing nothing, our family members are suffering an incomprehensible injustice. Legislation and the mental health system must change. At the same time, government funding, research grants, foundations and private donations should be encouraged to aggressively support research for better treatment and eventually a cure for the mostly young, very sick people the world has by-passed for years.

My experience may sound extreme but I gather it is not. I’ve heard of a number of families who have had similar experiences with lawyers who deny them the ability to help their ill relatives. These lawyers may think they are protecting the rights of their clients but they are not. Without continued treatment, they will get sicker and sicker and, in many cases, end up back in hospital or homeless. If this has happened to your family, please post your comments to this blog.