A few months after the death of Joyce Echaquan, Mireille Ndjomouo, a 44-year-old Black woman, posted a shocking video on Facebook from the Charles-Le Moyne Hospital in Longueuil on Montreal’s South Shore. In the video, she said that the medical staff have given her penicillin even though they knew she was allergic to it. She passed away two days later after complaining about swelling in her stomach, difficulty breathing and skin rashes.
Both Mireille and Joyce advocated for themselves when they were seeking medical help even if it put their physical integrity at stake. And both ended up dying.
There is an ongoing investigation into Mireille Ndjomouo’s case, but it got me wondering, how do you advocate for yourself in the healthcare system when you are from a marginalized community? Who advocates for me when I am unable to do it?
You have rights in the healthcare system, but not everyone is aware of that because there are few-to-no medical literacy resources available to people when they need it the most. It’s worth looking at codes of ethics and users’ rights when seeking medical care, and you have the right to that information.
Fortunately, there is a Complaints Commissioner at the Cree Board of Health and Social Services of James Bay. I hope people do use that path if the care they receive is inadequate – or, as in Joyce and Mireille’s cases, abusive. Even if it’s not perfect, it’s still a good way to hold your healthcare professionals accountable.
From experience, standing up for yourself and disagreeing with the care provided to you can be tricky. The power dynamics between a doctor who represents a figure of authority and a vulnerable patient are already complex. Add to that layers of unconscious biases on race or mental illness and it can get messy.
I’ve had bad experiences, but over the years I learned that I have the right to refuse a treatment, the right to have options when possible and the right to ask questions. Even with the knowledge I have, the system managed to fail me in different ways than it failed Joyce and Mireille. And relying only on oneself in a situation in which you are supposed to receive help is draining.
The other day, I was attending a workshop on anxiety management. A physician told someone: “You can call the clinic and ask to be put in contact with me. If I’m telling you this, it’s because it should work and that’s my way of being accountable to you.”
It kind of blew my mind because I rarely see doctors talking about accountability and taking concrete actions to empower me – who’s also a youth – as a patient. Identifying how to hold my healthcare provider accountable if something happens prior to receiving care makes me feel safer now. But what do we do when that fails too?