Ellen Cohen is the national co-ordinator of the National Network for Mental Health.
In August, 2021, I was appointed to sit on the federal government’s Expert Panel on Medical Assistance in Dying and Mental Illness. The panel was struck to support Ottawa “in developing its approach for safely providing access to MAID for persons with a mental illness.” I had been asked to speak to the intersection of mental illness and disability, and the many challenges that people affected by such conditions face.
This work is important because in March, Canada will legalize MAID for people whose sole underlying medical condition is a mental-health disorder. I believe this expansion of the MAID law would be a serious mistake. Setting out policies around it requires significant care.
In my work on that panel, I shared my own lived experience with mental illness, my experience as a family member of people with mental illnesses and my expertise from my work. I spoke about how many people with disability and mental illness don’t get the help they need because the health care system doesn’t understand how to support their needs. I spoke about the lack of social and economic supports for people living with mental illness, and how this can lead people to consider MAID.
I went into the panel with an open mind. In Canada, the psychiatric system is the only part of the medical system that legally permits physicians to hold and treat patients against their will. This is allowed under provincial and territorial mental-health legislation.
Taking aim against this practice is the psychiatric consumer-survivor movement, which began in the 1960s, when people started to challenge some of the harmful and coercive effects of psychiatry, including forced treatment, stigma and discrimination. But disability communities are diverse, and I know that consumer-survivors are divided on the issue of MAID and mental health.
I also knew that the panel was not permitted or designed to reject MAID for mental illness. We were supposed to consider how to do so safely before March. But to do our job effectively, we needed to engage seriously with complicated issues concerning decision-making, consent and capacity, privilege and vulnerability, and accountability and monitoring. In my experience, the panel failed to do so.
MAID requires a person to voluntarily consent to it, but how do we understand consent for people with mental illnesses who may be forcibly confined and treated against their will? Do we need a special set of safeguards in those situations?
People with disabilities have already been applying for and getting MAID because they are living in poverty, don’t have appropriate housing or can’t get the health care they need – reasons that are supposed to be outside the scope of MAID laws. How do we make sure this doesn’t happen when MAID is expanded to people whose only underlying condition is a mental illness? How do we ensure their stories are told? The report recommended that people be told about “the broadest possible range of social supports” that could ease their suffering, but there’s no guarantee that those supports will be made available.
I do not believe the panel gave these issues serious consideration. For example, they recommended that if a person is continually “in a situation of involuntariness” for longer than six months, they should still be allowed to apply for MAID and be assessed from inside a psychiatric facility. Situations of involuntariness would include being in and out of a psychiatric facility, or being locked in the criminal-justice system.
As part of the panel, I had proposed changes to provincial and territorial mental-health legislation, as well as equitable funding for best practices such as peer support, psychiatric screening, better monitoring and team-based assessments.
But it appeared to me that panel members simply did not want to put forward any serious safeguards that would require the law to change. I also often felt that I was treated like I didn’t know what I was talking about and was shamed for suggesting safeguards. As such, it was as though the panel’s recommendations had already been set before the work had even started. The disability accommodations for tape recordings or notes that I had requested for the panel were also rejected.
I felt so much shame, but also so much responsibility. I started having panic attacks in the middle of the night, thinking of my family and my communities.
And so after serving on the panel for five months, I made the difficult decision to resign in December, 2021. I could not legitimize the process, and I also could not condone the conclusions of the panel, which were released in May. (Conditions of my appointment included that there would be no compensation for my participation and that I sign a confidentiality agreement, which has now expired.)
In my view, the Expert Panel on MAID and Mental Illness did not meaningfully deliver on its responsibilities. On such high-stakes matters of life and death, we all deserve better.