We’ve all gotten medical advice we didn’t follow.
Get more exercise? With what free time?
Eat less meat? No, thank you.
Eight hours of sleep a night? Lol, I’ll get right on that.
But sometimes you’re deemed too sick – too crazy – to ignore medical advice.
Tens of thousands of times a year, Ontarians are deemed too crazy to decide to leave hospital, too crazy to consent – or withhold consent – to treatment.
And thousands of times a year, they challenge those medical designations at the arms-length body that adjudicates such challenges – the Consent and Capacity Board.
The vast majority of the time, they lose.
Through a freedom-of-information request, the Investigative Journalism Bureau obtained a decade of data from that board – more than 100,000 applications for review. This provided a window into the only formal recourse people have when their doctor formally curtails their agency.
Crunching the data with my colleague Dori Seeman, I learned the board sides with doctors nearly nine times out of 10, depending on the nature of the application. Through analyzing 50 published decisions I learned the way the board makes judgment calls. And by observing these hearings I saw just how agonizing this process can be for both doctors and patients: It is hard to heal a brain when you are doing things to that brain’s owner against its will.
This may seem a niche issue, but it matters. It matters to the tens of thousands of Ontarians medically coerced every year. It matters to the families, friends, employers, pets affected by such coercion.
It matters, in the interest of full disclosure, to me: I’ve been hospitalized against my will. I’ve written about it. And while I got exceptional care, I know what that loss of agency feels like. It ain’t fun.
Just about every jurisdiction in Canada has a framework in place for when people are too sick to make their own decisions – and it varies by decision. It is important to have these frameworks: There are times when people pose a danger (overwhelmingly to themselves) through no fault of their own.
But it is also important for us to recognize the costs of coercion – in quality of life, perhaps, but, crucially, in trust. Does it really help someone in the long run if they get forced care for a few months and system mistrust for a lifetime?
Chasing this story also reminded me how important early intervention is in mental health: The Consent and Capacity Board’s caseload has skyrocketed, and one psychiatrist I spoke with said this is because people are sicker and are not getting timely care. We can change that.
This will not be our last deep dive into medical coercion. There is far more digging to do into a side of medical care we discuss all too rarely.
And if you have questions, comments or (especially) story ideas, I would love to hear them: amehlerpaperny@ijbureau.org.
